Health Care Law Blog: AHLA Connections: Legal Implications of Health Care Social Media – A (dare I say) beautiful article / reference written by Bob Coffield about health care and social media.

A few things relevant to my situation that are worth repeating/thinking about in other organizations:

• The presence of an internal social network (at Kaiser Permanente, it’s called Ideabook – referenced in this presentation), helps to manage the stated concern about superiors and subordinates friending each other on public social networks. The internal social network creates a professional environment for colleagues to connect and share interests, and in the one that we use, there is no accepting or ignoring of requests – a colleague relationship is established on request automatically.
• The presence of a useful social media policy. Here’s a link to Kaiser Permanente’s social media policy. Several people have contacted me and asked if it may be copied / used by their organization. The answer is yes.

Thanks again to Bob and team for being interested in this topic and in keeping patients engaged and protected, two of the most important types of care we provide for patients.

Feder JL. Cell-Phone Medicine Brings Care To Patients In Developing Nations [Internet]. Health Aff 2010 Feb;29(2):259-263

Kahn JG, Yang JS, Kahn JS. ‘Mobile’ Health Needs And Opportunities In Developing Countries [Internet]. Health Aff 2010 Feb;29(2):252-258

As I alluded to in my post yesterday, this month’s issue of Health Affairs is devoted to E-Health in the developing world, a great validation of the importance of learning from this trend, given this journal’s ability to attract the best authors.

With that in mind, I eagerly approached these two.

The first, Kahn JG, Yang JS, Kahn JS. ‘Mobile’ Health Needs And Opportunities In Developing Countries [Internet]. Health Aff 2010 Feb;29(2):252-258. , attracted me because its lead author, James Kahn, MD, is an innovator in the developing world, through his work to support patients with AIDS in San Francisco. I was fortunate to meet Jim in previous work (and blogged about it here) and think his perspective is very valuable to people thinking about mHealth.

This article is particularly useful for the mHealth inexperienced (that’s me) as well as the mHealth and eHealth inexperienced. For those of us that live in the stew of innovation, we forget that most people don’t know what we mean when we say, “mHealth,” so starting off with a helpful definition is great (“the use of wireless communication devices to support public health and clinical practice”).

Beyond basic definitional elements, the article has a nice table of mHealth applications listed, along with their potential benefits and risks. The article also links to a report that was mentioned in the HealthAffairs briefing that also seems worthwhile. You can find that report here. The most important thing that the authors state is this:

“We found minimal formal evaluation of m-health.”

So, as much as it excites me/us for its potential, we have to remember that it doesn’t yet excite us for its outcomes. I/we have been here/there before with eHealth and the web, so we understand the dance, and in retrospect it seems that in the absence of hard evidence, these technologies will be used; however, they may be more strongly used to provide better service and access rather than hard clinical outcomes. And, this is okay, service and access to health care (and let’s say, prevention and primary care specifically) do improve health. But why not be aspirational this time around, right?

The second article,  Feder JL. Cell-Phone Medicine Brings Care To Patients In Developing Nations [Internet]. Health Aff 2010 Feb;29(2):259-263., is a description piece about some of the innovation that’s happening in Mexico City. As I remarked yesterday, the article dropped a big bomb for me when it mentioned that giving patients access to their medical records is prohibited by law. It’s part of the description of the background that results in the innovation that is seen there, and, as usual, I see lots of parallels to our health system here.

I did notice one review article mentioned here that was not mentioned in the Kahn article above, that you can see the reference for here, which reviews some outcomes from SMS.

Specific services are discussed covering the areas of cardiovascular disease and HIV, co-created with Voxiva, who I also met last year (and who are behind the new Text4Baby service). When it comes to the next service, Diabetes, there’s an implication in the article that this is taking longer to launch, and maybe (or maybe not) this highlights some of the limitations of text-based mHealth services.

Whether there are limitations or not, however, the environment that this work is happening is going to push toward removing hurdles, not creating them. In this sense, discovery about how to use mHealth is more likely to be global, which can only foster the best kind of innovation, the kind crosses borders, not just physically, but nationally and experientially as well.

A PDF version of the rule with my highlights. Click the image above to download.

I love rules and regulations, and I don’t mean that sarcastically, because a rule or a regulation isn’t a rule or regulation. It’s the way the will of the people is executed. Once I began to see rules and regulations that way, i appreciated them as windows, small puzzles, into the minds of the people who are trying to solve a problem.

The corollary to all of this is that whenever someone says to me, “The rule says X, do Y,” my response is “let’s go read it together.” My “read the regulation yourself’ approach is very important, because it’s likely that the approach to satisfying the rule depends on knowing the care process and what the problem being solved was/is. The goal is not to satisfy the rule, after all, it’s to solve the problem that created the rule.

With that in mind, I read the CMS Proposed Rule: Medicare and Medicaid Programs; Electronic Health Record Incentive Program , and my annotations are below (comments are bolded in parens). The front part is about the problems to be solved, the back part is about paying for the problems to be solved. With that in mind, I focused more on the front part.

As it says in the title of the post, the perspective I am bringing is about patient access to their health care information:

I find the rule to be encouraging in most areas (really):

• It validates the inpatient setting as the next frontier of patient access to their health care information (avoiding the 73-cents-type disasters that happen during many hospitalizations today).
• It promotes use of the After Visit Summary.
• It sets a time limit on patient access to their health data of 96 hours. Better late than never.

It’s discouraging in some areas:

• It says patient’s can’t have automated access to all of their diagnostic test results after 96 hours of finalization, just lab tests. Imaging and pathology aren’t included in the definition of lab tests. Same goes for progress notes, too. It appears that they can “request” the other testing and that these need to be delivered in 48 hours. So, maybe this is functionally equivalent? If a reader could review the pages and comment that would be helpful to me – This is somewhat confusing to me.
• It perpetuates and codifies federal discrimination against lesbian, gay, bisexual, and transgender Americans in EHR implementations. I know this is bigger than a CMS rule, however, the written word in this rule promotes practices that ensure that these Americans will continue to experience disparities that will ultimately cost them and our nation good health and productivity. A leader in the last Administration once said to me, “We know this is a problem, we are just not allowed to address it.” Well, we should be allowed to now….(and if anyone reading this has some ideas for me, let me know, I’m happy to assist)

Also, on costs, the studies that it uses to base costs of EHR implementations do not include patient portals. These have usually been funded on top of these estimates. That’s what I think. I don’t know if that changes anything about the incentive payments. It just may affect how people perceive the cost of implementation of a full meaningful use EHR.

I’m not planning on submitting this information as comments to CMS, but you are welcome to copy-pasted as you see fit if you are going to, and finally, as it says on my About page, the views expressed here are my own and not of any organization I am affiliated with.

You’ll see a stream of consciousness in my notes, keep that mind. Feel free to comment, and to follow my example, read the rule yourself, it’s worth it if you care about this.

• Highlight, page 16

The American Recovery and Reinvestment Act of 2009 (ARRA) (Pub. L. 111-5) was enacted on February 17, 2009

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These provisions, together with Title XIII of Division A of ARRA, may be cited as the Health Information Technology for Economic and Clinical Health Act” or the “HITECH Act.”

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CMS and ONC have been working closely to ensure that the definition of meaningful use of certified EHR technology and the standards for certified EHR technology are coordinated. “Meaningful use” is a term defined by CMS and describes the use of HIT that furthers the goals of information exchange among health care professionals. In an upcoming interim final rule, ONC will identify the initial set of standards and implementation specifications that EHR technology must implement, as well as the certification criteria that will be used to certify EHR technology, and will further define the term “certified EHR technology.”

• Highlight, page 18

in the original Medicare program or hereinafter referred to as Medicare Fee-for-Service (FFS)

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The HITECH Act creates incentives in the Medicare Fee-for-Service (FFS), Medicare Advantage (MA), and Medicaid programs for demonstrating meaning EHR use and payment adjustments in the Medicare FFS and MA programs for not demonstrating meaningful EHR use.

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ONC will be defining certified EHR technology in its upcoming interim final rule and we propose to use the definition of certified EHR technology adopted by ONC.

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For these sections, the EHR reporting period may be any continuous 90-day period within the first payment year and the entire payment year for all subsequent payment years.

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For example, for payment year 2011, an EHR reporting period of March 13, 2011 to June 11, 2011 would be just as valid as an EHR reporting period of January 1, 2011 to April 1, 2011. An example of an unallowable EHR reporting period would be for an EP to begin on November 1, 2011 and finish on January 31, 2012.

• Highlight, page 28

Moreover, as discussed later in this proposed rule, we will require EPs and hospitals to demonstrate meaningful use by meeting certain performance thresholds (for example, EPs will need to use CPOE for 80 percent of all orders, and hospitals for 10 percent of all orders)

• Highlight, page 29

For the first payment year, therefore, we propose that the EHR reporting period will be any continuous 90-day period within the first payment year. However, beginning in the second payment year we see no compelling reason not to seek the most robust verification possible. Therefore for the second payment year and all subsequent payment years we propose the EHR reporting period be the entire payment year.

• Highlight, page 29

For example, allowing an EHR reporting period to begin as early as July 3, 2010 would allow an eligible hospital to successfully CMS-0033-P 30 demonstrate meaningful use on October 1, 2010, the first day of FY 201

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Due to the operational challenges presented and the statutory requirement to avoid duplication of payments to the extent possible, we are proposing that the earliest start date for EHR reporting period be the first day of the payment year.

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We propose to define at §495.4 the term “meaningful EHR user” as an EP or eligible hospital who, for an EHR reporting period for a payment year, demonstrates meaningful use of certified EHR technology in the form and manner consistent with our standards (discussed below).

• Highlight, page 34

In developing its recommendations, the HIT Policy Committee considered a report entitled “National Priorities and Goals” (http://www.nationalprioritiespartnership.org/uploadedFiles/NPP/08-253- NQF%20ReportLo%5b6%5d.pdf) generated by the National Priorities Partnership, convened by the National Quality Forum (NQF). Of the national health care priorities set forward by the NQF report, the HIT Policy Committee chose as priority areas patient engagement; reduction of racial disparities; improved safety; increased efficiency; CMS-0033-P 35 coordination of care; and improved population health to drive their recommendations. Those recommendations are available electronically at http://healthit.hhs.gov.

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coordination of care; and improved population health to drive their recommendations

• Highlight, page 35

Section V. of this proposed rule discusses the current adoption rates of HIT

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Therefore, we propose to create a common definition of meaningful use that would serve as the definition for providers participating in the Medicare FFS and MA EHR incentive program, and the minimum standard for EPs and eligible hospitals participating in the Medicaid EHR incentive program.

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meaningful use of certified EHR technology should result in health care that is patient-centered, evidence-based, prevention-oriented, efficient, and equitable.

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We are considering updating the meaningful use criteria on a biennial basis, with the Stage 2 criteria proposed by the end of 2011 and the Stage 3 definition proposed by the end of 2013.

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Stage 1: The Stage 1 meaningful use criteria focuses on electronically capturing health information in a coded format; using that information to track key clinical conditions and communicating that information for care coordination purposes

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Stage 2: Our goals for the Stage 2 meaningful use criteria

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encourage the use of health IT for continuous quality improvement at the point of care and the exchange of information in the most structured format possible, such as the electronic transmission of orders entered using computerized

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Stage 3: Our goals for the Stage 3 meaningful use criteria are, consistent with other provisions of Medicare and Medicaid law, to focus on promoting improvements in quality, safety and efficiency, focusing on decision support for national high priority conditions, patient access to self management tools, access to comprehensive patient data and improving population health.

• Highlight, page 42

We intend that Medicaid EPs and eligible hospitals who qualify for an incentive payment for adopting, implementing, or upgrading in their first payment year would follow the same meaningful use progression outlined below as if their second payment year was their first payment year.

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Table 1 outlines our proposal to apply the respective criteria of meaningful use for each payment year (1st, 2nd, 3rd, etc.) for EPs and eligible hospitals that become meaningful EHR users before 2015. Please note that nothing in this discussion limits us to proposed changes to meaningful use beyond Stage 3 through future rulemaking. TABLE 1: Stage of Meaningful Use Criteria by Payment Year * Avoids payment adjustments only for EPs in the Medicare EHR Incentive Program. ** Stage 3 criteria of meaningful use or a subsequent update to the criteria if one is established through rulemaking.

• Highlight, page 48

CMS and ONC have carefully reviewed the objectives and measures proposed by the HIT Policy Committee. We found many objectives to be well suited to meaningful use, while others we found to require modification or clarification. In our discussion we will focus on those areas where our proposal is a modification of the recommendation of the HIT Policy Committee.

• Highlight, page 49

We also removed the phrase “etc.” We believe that the level of ambiguity created by “etc” is not appropriate for Federal regulations.

• Highlight, page 49

For Stage 1 criteria, we propose that it will not include the electronic transmittal of that order to the pharmacy, laboratory, or diagnostic imaging center.

• Anchored Note, page 49

CPOE

Wow, no electronic transmittal required of the order?

• Highlight, page 50

We describe a “problem list” as a list of current and active diagnoses as well as past diagnoses relevant to the current care of the patient. (The first official definition of an electronic problem list I have seen)

• Highlight, page 50

emographics: preferred language, insurance type, gender, race and ethnicity, and date of birth

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Record the following demographics: preferred language, insurance type, gender, race and ethnicity, and date of birth. We note that race and ethnicity codes should follow current federal standards published by the Office of Management and Budget

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Record the following demographics: preferred language, insurance type, gender, race and ethnicity, and date of birth. We note that race and ethnicity codes should follow current federal standards published by the Office of Management and Budget (http://www.whitehouse.gov/omb/inforeg_statpolicy/#dr).

• Highlight, page 50

We do not propose to include the objective “Record Advance directives.” (Looking at the rationale, I wonder if this decision is politically driven, based on events of the summer of 2009. I think it’s reasonable to ask that an EHR store a patient’s wishes for life sustaining care, and unforunately a lot of EHRs do this very poorly, resulting in lots of confusion and poor outcomes when they are least needed by stressed patients and families.)

• Highlight, page 51

plot and display growth charts for children 2 – 20 years, including BMI. This is a modification to the HIT Policy Committee recommendation to require eligible professionals to record vital signs: height, weight, blood pressure and calculate BMI. We added “plot and display growth charts for children 2 – 20 years, including BMI” to the objective recommended by the HIT Policy Committee, as BMI itself does not provide adequate information for children. (Interesting example of CMS going beyond what was recommended; I understand the rationale – meaningful use looks like a back door for guideline implementation)

• Highlight, page 52

Generate lists of patients by specific conditions to use for quality improvement, reduction of disparities, research, and outreach. (unfortunately, LGBT status is not respected as a vulnerable population in the rule due to well-described federal discrimination against this group, so this group will be completely passed over in benefitting, even though the data shows clearly that they suffer disparities in the health care system – this should be changed)

• Highlight, page 52

Send reminders to patients per patient preference for preventive/follow-up care. Patient preference refers to the patient’s choice of delivery method between internet based delivery or delivery not requiring internet access. (First mention of patient access! Noted, page 52)

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It does not include the electronic transmittal of that order to the pharmacy, laboratory, or diagnostic imaging center in 2011 or 2012. (So, basically, the EHR is a typewriter for these types of orders in 2010)

• Highlight, page 55

We note that race and ethnicity codes should follow current federal standards published by the Office of Management and Budget (http://www.whitehouse.gov/omb/inforeg_statpolicy/#dr).. (Note exclusion of lesbian, gay, bisexual, transgender Americans in the group of people experiencing disparities)

• Highlight, page 57

We believe greater clarification is required around the term clinical decision support. We propose to describe clinical decision support as health information technology functionality that builds upon the foundation of an EHR to provide persons involved in care processes with general and person-specific information, intelligently filtered and organized, at appropriate times, to enhance health and health care. (Okay, this definition as operationalized in health care typically means “not including the patient” when “persons involved in care processes” are discussed. Not sure if this is a huge deal, but in the future, perhaps a clinical decision support rule might be one aimed at patients rather than doctors/nurses)

• Highlight, page 58

The second health outcomes policy priority identified by the HIT Policy Committee is to engage patients and families in their healthcare. The following care goal for meaningful use addresses this priority: ( smile )

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For purposes of all objectives of the Stage 1 criteria of meaningful use involving the disclosure of information to a patient, a disclosure made to a family member or a patient’s guardian consistent with Federal and State law may substitute for a disclosure to the patient.

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Provide patients with an electronic copy of their health information (including diagnostics test results, problem list, medication lists, allergies) upon request. CMS-0033-P 59 Consistent with the HIT Policy Committee’s recommendations, we propose the following additional clarification of this objective. Electronic copies may be provided through a number of secure electronic methods (for example, personal health record (PHR), patient portal, CD, USB drive).

• Highlight, page 59

Consistent with the HIT Policy Committee’s recommendations, we propose the following additional clarification of this objective. Electronic copies may be provided through a number of secure electronic methods (for example, personal health record (PHR), patient portal, CD, USB drive). (The so-called “PDF is okay” clause)

• Highlight, page 59

Provide patients with timely electronic access to their health information (including lab results, problem list, medication lists, allergies) within 96 hours of the information being available to the EP. Also, consistent with the HIT Policy Committee recommendations, we propose the following additional clarification of this objective. Electronic access may be provided by a number of secure electronic methods (for example, PHR, patient portal, CD, USB drive). Timely is defined as within 96 hours of the information being available to the EP either through the receipt of final lab results or a patient interaction that updates the EP’s knowledge of the patient’s health. We judge 96 hours to be a reasonable amount of time to ensure that certified EHR technology is up to date. We welcome comment on if a shorter or longer time is advantageous. (Hmmm…4 days. It’s certainly better than never. Where does imaging and pathology fall into this time frame?)

• Highlight, page 59

We do not propose to include the objective “Provide access to patient-specific education resources upon request.” (This seemed confusing to me from the start, I understand the rationale – I think providing the raw information is going to drive this happening, that’s where the focus should be anyway, in my opinion)

• Highlight, page 60

Provide clinical summaries for patients for each office visit. Changed from encounter to office visit. The HIT Policy Committee recommended the objective “ Provide clinical summaries for patients for each encounter.” We believe this objective requires further clarification in order make the distinction that it is not meant to apply to alternative encounters such as telephone or web visits. As a result, we propose to revise this objective to “Provide clinical summaries for patients for each office visit.”

• Highlight, page 60

As a result, we propose

• Highlight, page 60

Provide patients with an electronic copy of their health information (including diagnostic test results, problem list, medication lists, allergies, discharge summary, procedures), upon request. Consistent with the HIT Policy Committee’s recommendations, we propose the following additional clarification of this objective. Electronic copies may be provided through a number of secure electronic methods (for example, Personal Health Record (PHR), patient portal, CD, USB drive). (PHR in the inpatient setting is made possible by this – excellent)

• Highlight, page 60

Provide patients with an electronic copy of their discharge instructions and procedures at time of discharge, upon request.

• Highlight, page 61

By “diagnostic test results” we mean all data needed to diagnose and treat disease, such as blood tests, microbiology, urinalysis, pathology tests, radiology, cardiac imaging, nuclear medicine tests, and pulmonary function tests. (Excellent, this means that imaging and pathology are included in the definition of diagnostic testing. They are currently not considered the same as “test results” in many organizations for the purpose of sharing. This ends that distinction – however further down, we go back to “lab tests” for patient sharing, excluding imaging and path. Let’s not do that.)

• Highlight, page 62

Examples would include an insurance company that covers the patient or a personal health record vendor identified by the patient. (This hints at interoperability in Stage 1 – “personal health record vendor” identified by the patient – does this override the 96 hour delay discussed above?)

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We propose to describe medication reconciliation as the process of identifying the most accurate list of all medications that the patient is taking, including name, dosage, frequency and route, by comparing the medical record to an externally list of medications obtained from a patient, hospital or other provider. (Wow, a single definition for medication reconciliation. This is significant)

• Highlight, page 63

Provide summary care record for each transition of care or referral. (A net add by CMS , was not in the initial HIT Pol objectives explicitly, just referred to)

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The patient’s health care team communicates with public health agencies. The goal as recommended by the HIT Policy Committee is “communicate with public health agencies.” We found this goal to be somewhat ambiguous, as it does not specify who must communicate with public health agencies. We propose to specify “the patient’s health care team” as who would communicate with public health agencies. (Below this there are some specifics – this looks like a lot to accomplish)

• Highlight, page 64

The fifth health outcomes policy priority is to ensure adequate privacy and security protections for personal health information. The following care goals for meaningful use address this priority: Ensure privacy and security protections for confidential information through operating policies, procedures, and technologies and compliance with applicable law. Provide transparency of data sharing to patient. (What will the objective be for the last bullet point? Reading with anticipation. I read further down and couldn’t find the measurable objective spelled out, unless “provide transparency” is referring to the items above in patient access)

• Highlight, page 66

For each of these measures utilizing a percentage and the reporting of clinical quality measures, we propose at §495.10 that EPs and eligible hospitals submit numerator and denominator information to CMS. We invite comment on our burden estimates associated with reporting these measures (see section III. of this proposed rule). (This is where we get into numbers)

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we are proposing all measures be limited to actions taken at practices/locations equipped with certified EHR technology. (So if part of the practice is not using an EHR, that doesn’t go into the count)

• Highlight, page 68

We are proposing that to be a meaningful EHR user an EP must have 50 percent or more of their patient encounters during the EHR reporting period at a practice/location or practices/locations equipped with certified EHR technology. (But practices can’t limit EHR use to a subset of their organization to collect the incentive based on percentages, let’s see how this plays out with patient access)

• Highlight, page 72

EP/Eligible Hospital Objective: Maintain an up-to-date problem list of current and active diagnoses based on ICD-9-CM or SNOMED CT® EP/Eligible Hospital Measure: At least 80 percent of all unique patients seen by the EP or admitted to the eligible hospital have at least one entry or an indication of none recorded as structured data. (This is good for patients – there are many products out there that create crosswalks between these codes and searchable terms on the Internet, and in the future, the actual codes themselves will be the best search terms – let’s get away from “patient friendly” conversions)

• Highlight, page 74

EP/Eligible Hospital Objective: Maintain active medication list. EP/Eligible Hospital Measure: At least 80 percent of all unique patients seen by the EP or admitted by the eligible hospital have at least one entry (or an indication (I don’t see how this supports maintaining the list accurately or having the patient confirm its accuracy, I’ll keep reading – and sure enough, reconciliation events are discussed later on)

• Highlight, page 78

The numerator for this objective is the number of unique patients seen by the EP or admitted to an inpatient facility/department (POS 21) that falls under the eligible hospital’s CCN during the EHR reporting period who have all required demographic elements (preferred language, insurance type, gender, race, and ethnicity, date of birth and, for hospitals, date and cause of death in the case of mortality) recorded as structured data in their electronic record.(I’m going to say this because I have a feeling no one else will, sadly, and that is that sexual minority status should also be recorded as a demographic – all of the concerns/fears that go with recording this have already been addressed in getting us to the place where we record ethnicity and race, if there’s disagreement on this point, I’d like to hear it)

• Highlight, page 83

EP/Eligible Hospital Objective: Generate lists of patients by specific conditions to use for quality improvement, reduction of disparities, research, and outreach. EP/Eligible Hospital Measure: Generate at least one report listing patients of the EP or eligible hospital with a specific condition. (Not very robust – “create a list of patients once” – I’ll keep reading, this is Stage 1)

• Highlight, page 84

EP Objective: Send reminders to patients per patient preference for preventive/ follow-up care EP Measure: Reminder sent to at least 50 percent of all unique patients seen by the EP or admitted to the eligible hospital that are 50 and over (Messy – the hospital would send preventive care reminders? What about the patient’s primary physician? This one seems a little un-supportive if not threatening to good primary care. I have a feeling that hospitals would rather not be accountable for this task, but I could be wrong…) (Corrected 1/12/10 – this is an EP measure, not a hospital measure, this is clarified in the IFR document – I am still confused about the insertion of ‘eligible hospital’ in the requirement)

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Research has shown that decision support must be targeted and actionable to be effective, and that “alert fatigue” must be avoided. (Actually, Research has not shown that “alert fatigue” must be avoided – the alert fatigue part of this sentence has been thrown in, but it has no basis in evidence that I know of, e.g. that alert fatigue exists when the alerts are accurate. Feel free to correct me on this point.)

• Highlight, page 89

EP Objective: Provide patients with an electronic copy of their health information (including diagnostic test results, problem list, medication lists, and allergies) upon request Eligible Hospital Objective: Provide patients with an electronic copy of their health information (including diagnostic test results, problem list, medication lists, allergies, discharge summary, and procedures), upon request. EP/Eligible Hospital Measure: At least 80 percent of all patients who request an electronic copy of their health information are provided it within 48 hours. (Great. This will prevent another 73 cents disaster. Diagnostic tests does include radiology and path as discussed above. Progress notes are not included, though, why not? They should be)

• Highlight, page 90

Stage 1 criteria, reliant on the electronic exchange of structured information between health care providers, we propose to set the percentage required for successful demonstration at 80 percent. (It’s only strange that this percentage is based on percentage of patients who request. As I think through this, what’s being measured is the timeliness, not the actual ability to do this, which has to be 100% from a capability perspective. The hospital then, needs to set a timer and ensure that from the moment of request that they meet the criteria. I suggest every patient and their family place the request right at admission, frankly. In other words, patients should not have to wait until discharge.)

• Highlight, page 91

Eligible Hospital Objective: Provide patients with an electronic copy of their discharge instructions and procedures at time of discharge, upon request. Eligible Hospital Measure: At least 80 percent of all patients who are discharged from an eligible hospital and who request an electronic copy of their discharge instructions and procedures are provided it. (Why not combine the two things, such that at any time, patient/family can request medical record during the admission. If they request at discharge or after, they get discharge information additionally, and if at discharge, they should get immediately since this is a fragile time)

• Highlight, page 92

EP Objective: Provide patients with timely electronic access to their health information (including lab results, problem list, medication lists, allergies) EP Measure: At least 10 percent of all unique patients seen by the EP are provided timely electronic access to their health information (frowny face. It says “lab results” here, where it says “diagnostic test results” above. This excludes imaging and path – why not just be consistent and make this section “diagnostic test results” so that whatever is shared by care providers is shared with patients [the most important care providers] )

• Highlight, page 93

We recognize that many patients may not have internet access, may not be able or interested to use a patient portal. Health systems that have actively promoted such technologies have been able to achieve active use by over 30 percent of their patients, but this may not be realistic for many practices in the short term. (This is a very low bar, I understand the rationale sort-of, however the numerator is a little squishy – it says “for example if”, doesn’t define what timely means, and what provision means. If it said “10 % of patients documented to review their diagnostic testing results online within 96 hours of transmission” that might be more supportive of this idea)

• Highlight, page 93

EP Objective: Provide clinical summaries to patients for each office visit. EP Measure: Clinical summaries provided to patients for at least 80 percent of all office visits. (Terrific. This allows organizations to compete on creating the best one. It’s important in this case that PAPER is an option, glad this is stated in the objective. Paper is very powerful in this context, this is an area where online doesn’t trump something you take away in your hand.)

• Highlight, page 94

EP Objective: Capability to exchange key clinical information (for example, problem list, medication list, allergies, and diagnostic test results), among providers of care and patient authorized entities electronically. (Again, there are two standards here, one for “care providers” who are not patients, and one for care providers who are the patients. The non-patients get more information than the patients do through the slight of a single word  - “diagnostic” vs “lab” for test results.)

• Highlight, page 95

EP/Eligible Hospital Objective: Perform medication reconciliation at relevant encounters and each transition of care. EP/Eligible Hospital Measure: Perform medication reconciliation for at least 80 percent of relevant encounters and transitions of care. (This answers my question farther up, good. And Medication reconciliation is defined above so good news there as well)

• Highlight, page 97

EP/Eligible Hospital Objective: Provide summary care record for each transition of care and referral. EP/Eligible Hospital Measure: Provide summary of care record for at least 80 percent of transitions of care and referrals. (Gosh, as I read this, it seems that there are two parallel universes – care providers who are patients themselves, and ones who are not. It almost seems redundant – why not just include patients in the care provider category and they get all the same information anyone else does during a transition. Isn’t that just easier and more accurate? This might keep the phr-ehr team competition within organizations from stopping innovation)

• Highlight, page 100

EP/Eligible Hospital Objective: Capability to provide electronic syndromic surveillance data to public health agencies and actual transmission according to applicable law and practice. (Kind of the same thing, whenever anything is reported that includes a specific patient’s data, it’s reported to the patient, too)

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“Incorporate clinical lab-test results into EHR as structured data” will be expanded to include the full array of diagnostic test data used for the treatment and diagnosis of disease, where feasible, including blood tests, microbiology, urinalysis, pathology tests, radiology, cardiac imaging, nuclear medicine tests, and pulmonary function tests; (….and let’s share all of these with patients)

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We anticipate that for the 2012 payment year we will have completed the necessary steps to have the capacity to receive electronically information on clinical quality measures from EHRs including the promulgation of technical specifications for EHR vendors to use for obtaining certification of their systems.

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Despite the statutory limitation prohibiting the Secretary from requiring the electronic submission of clinical quality measures if HHS does not have the capacity to accept this information electronically, as previously discussed, the Secretary has broad discretion to establish requirements for meaningful use of certified EHR technology and for the demonstration of such use by EPs and eligible hospitals. (So the spotlight will be on meaningful use, which includes patient access, it’s good that this is up front and not later on)

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• Clinical quality measures that promote CMS and HHS policy priorities related to improved quality and efficiency of care for the Medicare and Medicaid populations that would allow us to track improvement in care over time. These current and long term priority topics include: prevention; management of chronic conditions; high cost and high volume conditions; elimination of health disparities; healthcare-associated infections and other conditions; improved care coordination; improved efficiency; improved patient and family experience of care; improved end-of-life/palliative care; effective management of acute and chronic episodes of care; reduced unwarranted geographic variation in quality and efficiency; and adoption and use of interoperable HIT. (Good reminder that elimination of health disparities and patient and family experience of care are important considerations for CMS so this area is an available one to influence change as well)

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TABLE 3: Proposed Clinical Quality Measures for Electronic Submission by Medicare or Medicaid Eligible Professionals for the 2011 and 2012 Payment Year

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Title: Controlling High Blood Pressure Description: Percentage of patients with last BP < 140/80 mm Hg. (This should include home measurement with validated cuff. Office blood pressure measurement is often inaccurate)

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The second required measure set for each EP is to submit information on at least one of the sets listed in Tables 5 and 19 as specialty groups. The specialty groups are Cardiology, Pulmonology, Endocrinology, Oncology, Proceduralist/Surgery, Primary Care Physicians, Pediatrics, Obstetrics and Gynecology, Neurology, Psychiatry, Ophthalmology, Podiatry, Radiology, Gastroenterology, and Nephrology. (Lots of tables follow. These are the kind of things that are very amenable to clinical decision support rules/ alerts, and again, because acting on these reduces much more severe problems [or they wouldn't be included], they should not cause alert fatigue. The most leading edge providers will find a way to involve patients in understanding why these are important, so maybe an alert won’t be needed because the studies will be ordered by the patients themselves)

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Stroke-4 Title: Ischemic stroke – Thrombolytic therapy for patients http://www.hitsp.org/ arriving within 2 hours of symptom onset ConstructSet_Details.a NQF 0437 Description: Acute ischemic stroke patients who arrive at this spx?&PrefixAlpha=5 hospital within 2 hours of time last known well and for whom IV &PrefixNumeric=906 t-PA was initiated at this hospital within 3 hours of time last known well. Measure Developer: The Joint Commission

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We are proposing at §495.8 that for CY 2011 and FY 2011, EPs and eligible hospitals demonstrate that they satisfy each of the proposed meaningful use objectives specified in §495.6 through attestation

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As HIT advances we expect to move more of the objectives away from being demonstrated through attestation.

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As described below, the HITECH Act requires the Secretary to post online the names of Medicare EPs and eligible hospitals and CAHs who are meaningful EHR users for the relevant payment year.

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Section 1848(o)(3)(D) of the Act requires the Secretary to list in an easily understandable format the names, business addresses, and business phone numbers of the Medicare EPs and, as determined appropriate by the Secretary, of group practices receiving incentive payments for being meaningful EHR users under the Medicare FFS program on our internet web site. We do not propose to post information on group practices because we do not propose to base incentive payments at the group practice level.

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Section 1848(o)(1)(C , states that hospital-based EPs are not eligible for the Medicare incentive payments.

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(Based on preliminary claims data from the first 9 months of 2009, CMS currently estimates that, under this proposed definition, about 27 percent of Medicare EPs CMS-0033-P 187 (physicians) would be considered hospital-based and thus not eligible to receive any incentive payments. We do not have any data on Medicaid practitioners.)

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(physicians) would be considered hospital-based and thus not eligible to receive any incentive payments. We do not have any data on Medicaid practitioners.)

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Some primary care EPs who provide services to Medicare and Medicaid beneficiaries would be ineligible for the incentive payments. For example, we currently estimate that under this proposal, 12-13 percent of family practitioners under Medicare would be considered hospital-based under our proposed definition of hospital-based EP, and therefore would not be eligible for the EHR incentive payments.

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• As will be explained in the next section of this proposed rule, the hospital’s total incentive payment is based on total inpatient services. As result, a hospital with a large outpatient department will not receive a higher incentive payment as a result of their outpatient services. • Finally, as previously discussed, we are proposing that the Stage 1 meaningful use criteria for eligible hospitals apply only to a hospital’s inpatient setting. Because of these factors, we are concerned that hospital investment in their outpatient primary care sites is likely to lag behind their investment in their inpatient EHR systems. To address these concerns, as part of future rulemaking, we plan to consider ways to realign the meaningful use objectives and criteria to include a broader definition of hospital care to include outpatient services. (Right)

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In accordance with section 1848(o)(5)(C) of the Act, we propose to add a definition of the term “eligible professional” in our regulations at §495.100 to mean a physician as defined under section 1861(r) of the Act. Section 1861(r) of the Act defines the term “physician” to mean the following five types of professionals, each of which must be legally authorized to practice their profession under state law: a doctor of medicine or osteopathy, a doctor of dental surgery or dental medicine, a doctor of

• Highlight, page 192

podiatric medicine, a doctor of optometry, or a chiropractor. (Dentists and Podatrists and Chiropractors, too. I don’t know much about how these professionals bill Medicare or not, it would be interesting and useful to see patient access to their work as well – I hadn’t thought of a Chiropractic PHR before now….)

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TABLE 22: Maximum Total Amount of EHR Incentive Payments for a Medicare EP who does not Predominantly Furnish Services in a HPSA

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Increase in Incentive Payment for EPs who Predominantly Furnish Services in a Geographic Health Professional Shortage Area (HPSA) Section 1848(o)(1)(B)(iv) of the Act provides that the amount of the annual incentive payment limit for each payment year be increased by 10 percent

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Section 1848(a)(7) of the Act, as amended by section 4101(b) of the HITECH Act, provides for payment adjustments effective for CY 2015 and subsequent years for EPs who are not meaningful EHR users during the relevant EHR reporting period for the year

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The term ‘applicable percent’ means: “(I) for 2015, 99 percent (or, in the case of an EP who was subject to the application of the payment adjustment if the EP is not a successful electronic prescriber under section 1848(a)(5) for 2014, 98 percent);” “(II) for 2016, 98 percent; and (III) for 2017 and each subsequent year, 97 percent.

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but in no case shall the applicable percent be less than 95 percent.

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In addition to the base amount, the discharge related amount provides an additional $200 for each hospital discharge during a payment year, beginning with a hospital’s 1,150th discharge of the payment year, and ending with a hospital’s 23,000th discharge of the payment year. (More discharges = more $$$ , up to 23,000 per year)

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Medicare Share

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We propose to determine the numbers of Medicare Part A and Part C inpatient-bed-days using the same data sources and methods for counting those days that we employ in determining Medicare’s share for purposes of making payments for direct graduate medical education costs, as provided under section 1886(h) of the Act and §413.75 of our regulations.

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The exclusion of charges attributable to charity care has the effect of decreasing the denominator of the Medicare share fraction as the proportion of charity care (charity care charge ratio) provided by a hospital increases.

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Figure 1–Incentive Payment Calculation for Subsection D Hospitals

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In other words, the Secretary is required to subject eligible hospitals who are not meaningful users to one-quarter, one-half, and three-quarters reductions of their market basket updates in FY 2015, FY 2016, and FY 2017 and subsequent years respectively.

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A hospital that fails to report quality data and does not qualify as a meaningful EHR user would receive an update of 1.0 percent, which represents the full 2.0 percent update minus the reduction of one-quarter (0.5 percentage point) for failing to report

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quality data, and a further reduction of 0.5 percentage point (33 1/3 percent of three- quarters of the full update: 1/3 times 1.5 equals 0.5).

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qualifying EPs who do not have individual TINs (that is, a qualifying EP who works solely in a group practice) will be paid at the group practice level’s TIN.

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are proposing that qualifying EPs select one TIN for disbursement of their Medicare EHR incentive payment.

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We will conduct selected compliance reviews of EPs, eligible hospitals, and qualified CAHs who register for the incentive programs and of recipients of incentive payments for the meaningful use of certified EHR technology. The reviews will validate provider eligibility their meaningful use attestations including verification of meaningful use and would also review components of the payment formulas.

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C. Medicare Advantage (MA) Organization Incentive Payments

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Therefore, over the EHR reporting period, the qualifying EP must provide on average 20 hours per week of patient care services.

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Section 1853(m)(3)(B)(i) of the Act, as added by section 4101(c) of the HITECH Act, provides that if for a payment year at least one-third (33 percent) of a MA eligible hospital’s discharges (or bed-days) of Medicare patients are covered under Part A (rather than under Part C), the hospital may only receive an incentive payment under section 1886(n) of the Act – the Medicare FFS incentive program.

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So, the maximum cumulative incentive payment over 5 years to a qualifying MA organization for each of its qualifying MA EPs that meaningfully use certified EHRs beginning on or before 2012 would be $44,000 per qualifying MA EP.

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We estimated the national average FFS allowed amounts for the 5 levels of office visit codes (CPT codes 99211 – 99215) in 2009 to be: $20, $39, $63, $95, $129, respectively. We contemplated allowing, but not requiring, qualifying MA organizations to report consultation codes for specialist physicians (CPT codes 99241 – 99245) estimated to have national average FFS allowed amounts of $50, $94, $129, $190, and $234, respectively. (There it is, what a doctor can bill for each type of an office visit. A primary care physician seeing a patient for a cold is likely to bill at 99212 or 3, so $39 or $63 – no wonder primary care is in crisis)

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Meaningful User Attestation We propose meaningful user attestation requirements in §495.210. For each MA EP and MA-affiliated hospital for which a qualified MA organization seeks an incentive payment, the organization must attest, in a form and manner specified by us, that its MA EPs and MA-affiliated eligible hospitals are meaningful EHR users, as required by sections 1853(l)(6) and 1853(m)(1) of the Act.

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we note that qualifying MA organizations sponsoring coordinated care MA plans are already required to submit Healthcare Effectiveness Data and Information Set (HEDIS), Health Outcomes Survey (HOS), and Consumer Assessment of Healthcare Providers and Systems (CAHPS) measures per §422.152 and §422.516. Coordinated care MA plans include HMO, PPO and RPPO (Regional PPO) plans. Beginning with CY 2010, PFFS and MSA plans will also be required to begin collecting and submitting administrative HEDIS measures.

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Sections 1853(l)(7) and 1853(m)(5) of the Act, require us to post information on an Internet website related to the receipt of incentive payments under the MA EHR incentive program. Information would include the names, business addresses, and business phone numbers of each qualifying MA organization receiving an incentive payment under this section for qualifying MA EPs and hospitals. A list of the names of

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each qualifying MA EP and qualifying MA-affiliated eligible hospital for which an incentive payment has been made would also be posted. Since this requirement is applicable to other Medicare EPs and eligible hospitals, we have included this requirement in proposed §495.108. (Translation – you’ll be able to tell if your doctor uses a meaningful EHR before you go to see them, imagine how this will change the landscape of quality rating on the Web)

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In future rulemaking we will develop standards related to payment adjustments to qualifying MA organizations related to MA EPs and MA-affiliated eligible hospitals that are not meaningful users of certified EHR technology.

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Robert Miller and Christopher West report that initial EHR costs per full-time-equivalent (FTE) billing provider averaged almost $54,000, with much variation across CHCs and within each cost category, including hardware, software, installation, training, etc. and ongoing costs per FTE provider, per year, averaged $20,6105.

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The CBO paper goes further to say that few detailed studies available report that total costs for office-based EHRs are about $25,000 – $45,000 per physician6 and estimates for annual costs for operating and maintaining the system, which include software licensing fees, technical support, and updating and replacing used equipment range between $3,000 to $9,000 per physician per year7.

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An article written by the Agency for Healthcare Research and Quality (AHRQ), Research Activities, September 2005, Health Information Technology, adoption rates of electronic health records are low among physician groups — indicates that the average purchase and implementation cost of an EHR was $32,606 per FTE physician. The article indicates that maintenance costs were an additional $1,500 per physician, per month and smaller practices had the highest implementation costs per physician at $37,2048.

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However, based on the information reviewed, we determined that the average costs for initial EHR systems currently can range from $25,000 to $54,000 in the implementation year, per professional. Since the average costs of EHR technology in the first year can be as much as $54,000 and no less than $25,000, and since we believe the costs of such technology will be increasing we are proposing to set the average allowable cost at $54,000.

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TABLE 27: Maximum Incentive Payment Amount for Medicaid Professionals

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TABLE 28: Payment Scenarios For Medicaid EPs Who Begin Adoption in the First Y ear

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TABLE 33: Burden and Capital Costs associated with Meaningful Use Objectives and Associated Measures

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Send reminders to patients per patient preference for preventive/ follow up care Reminder sent to at least 50% of all unique patients seen by the EP that are age 50 or over Reporting requirement: numerator and denominator data The burden associated with this measures is included in the 0.5 hour attestation burden estimate TBD – cost of having functionality to send reminders to patients

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Estimated Total Burden and Total Capital Cost per Respondent for attestation to EHR technology, Set A Set B measures, and attestation and reporting of quality measures (I don’t think these numbers, based on the studies above, include costs for patient portals, so this may be low)

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To estimate capital costs, we assume a certified EHR will cost roughly $54,000 as explained in section V.G.4 of this proposed rule. (This does not includes costs for patient portals, remember, so this is artificially low)

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TABLE 34: Burden and Cost Estimates Associated with Information Collection Requirements ( I don’t think there are good estimates of the capital costs of patient portals )

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Overall, we expect spending under the EHR incentive program for transfer payments to Medicare and Medicaid providers to be between $14 and $27 billion over 10 years

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In total, we estimate that there are approximately 624,000 healthcare organizations (EPs or eligible hospitals) that will be affected by the incentive program.

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About 553,200 original Medicare FFS EPs in 2011 (some of which will also be Medicaid EPs).  About 27 percent of the total EPs are hospital-based Medicare EPs, and are not eligible for the program. This leaves approximately 404,400 nonhospital-based Medicare EPs in 2011.  Twenty percent of the nonhospital-based Medicare EPs (approximately 80,900 Medicare EPs in 2011) are also eligible for Medicaid (meet the 30 percent Medicaid patient volume criteria) but can only be paid under one program. Any EP in this situation will choose to receive the Medicaid incentive payment, because it is larger.

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About 38,200 non-Medicare eligible EPs (such as dentists, pediatricians, and eligible non-physicians such as certified nurse-midwives, nurse practitioners and physicians assistants) will be eligible to receive the Medicaid incentive payments.  5,011 eligible hospitals, comprised of the following: ++ 3,620 acute care hospitals. ++ 1,302 CAHs (Medicare only). ++ 78 children’s hospitals (Medicaid only). ++ 11 cancer hospitals (Medicaid only).

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12 MA Organizations (about 28,000 EPs, and 29 hospitals) would be eligible for incentive payments.  Payments can begin as early as FY 2011.

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Based on these studies, we estimate for EPs, the average adopt/implement/upgrade cost is $54,000 per physician FTE, while annual maintenance costs average $10,000 per physician FTE. (Again, these studies typically do not include costs to provide patient electronic access, open to correction on this point)

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The CBO estimated a cost range of $25,000 to $45,000 per physician. (I don’t think this includes patient access services)

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TABLE 35: Medicare EPs Demonstrating Meaningful Use of Certified EHR Technology, High and Low Scenario

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We estimate that there are 12 MA plans that might be eligible to participate in the EHR incentive program. Those plans have about 28,000 EPs.

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TABLE 36: Estimated Costs (+) and Savings (–) for Medicare EPs Demonstrating Meaningful Use of Certified EHR Technology, Low Scenario (in billions)

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TABLE 38: Hospital IT Capabilities By Hospital Size

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TABLE 47: Assumed Number of Nonhospital Based Medicaid EPs Who Will Be Meaningful Users of Certified EHR Technology, High Scenario

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ario

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Qualified EHR means an electronic record of health related information on an individual that includes patient demographic and clinical health information, such as medical history and problem lists; and has the capacity to meet all of the following: (1) Provide clinical decision support. (2) Support physician order entry. (3) Capture and query information relevant to health care quality. (4) To exchange electronic health information with, and integrate such information from other sources.

McLaren P. The right to know. [Internet]. BMJ 1991;303(6808):937-938.

Shenkin BN, Warner DC. Sounding board. Giving the patient his medical record: a proposal to improve the system [Internet]. N. Engl. J. Med 1973 Sep;289(13):688-692

I’m not that smart and my ideas are not that unique.

This is why I enjoy writing the posts that are tagged “where we came from” on this blog.

The title of this one comes from a 1991 article published in the British Medical Journal about the idea of providing patients access to their complete medical record. To really dig deep, though, I wanted to grab the seminal 1973 article from The New England Journal of Medicine on this topic, and thanks to the Internet, I found it.

In Sounding board. Giving the patient his medical record: a proposal to improve the system (There appears to be a PDF of this article on the Internet here), authors Shenkin and Warner lay out some facts about the health system that don’t seem to different than those of today, sadly:

Dissatisfaction with the functioning of the medical care-system has become widespread. Four serious problems are maintaining high quality of care, establishing mutually satisfactory physician-patient relations, ensuring continuity and avoiding excessive bureaucracy.

Some differences were apparent in 1973, such as the fact that in 41 states, patients could only obtain their medical records through litigation (!). Also, it appears with the emergence of “centralized organization” though things like health maintenance organizations, that physician autonomy was under siege. The health system was considered at the time to be “decentralized to the penultimate step – the physician” and the fear was that their autonomy was “unchecked.”

All of that aside, the authors, quite visionary in my opinion, laid out an almost Web 2.0 version of the medical world.

They talked about the idea of “decentralized medical review.” A few quotes:

The freely available record would provide a more “longitudinal” view of a patient, and physicians would appreciate better (and treat better) the course of a disease. Since innovation proceeds mainly by the contagion effect, new knowledge would probably be put into practice more swiftly.

And this one

Decentralized peer review would provide recognition of excellence in the practice of medicine, and hence enhance the prestige of being a practicing physician. Patient records and the care that they reflected would become a source of pride open to the perusal of fellow professionals. The expected improvement in continuity would decrease frustrations, and improved physician-patient relations would add importantly to physician satisfaction.

Whoa. They are talking wisdom of crowds, viral innovation, and building trust through transparency. In 1973.

Flash forward to 1991. In The Right to Know, author McLaren discusses data from Denmark, which provided patients “statutory rights” to their entire hospital record, with no ill effects. He concludes:

The argument against giving patients greater access to their records has been lost; the challenge now is to get doctors skilled in writing records that their patients will find useful.

Whoa. He’s talking Meaningful Use.

1973 was before my medical time, but 1991 wasn’t. In 1991 I was in medical school, and I’m pretty sure if you asked me, “Ted, should your patients see what you wrote about them in that manila folder thing with paper?” I would have said, “Why shouldn’t they?”

Ironically, it’s probably the very group that opposed these viewpoints that are responsible for creating mine. Summer of 1991 was my first (and I think just one of 2) trips to the national meeting of the American Medical Association, in Chicago. That meeting was marked by protests from the HIV/AIDS community on the outside. And on the inside, after a week, I remember leaving with the thoughts, “I met a lot of great peers here, but who are these leaders who are resistant to technology and only allow heterosexual men to participate?* They aren’t me. And I’m not them.” This is the heritage of Generation X – we were groomed to be on the side of the patients.

So that’s my story, and the story of where we came from with regard to sharing medical records with patients. Has nothing happened in 18 years? Absolutely not.

• The largest medical groups in the United States regularly share medical records with patients, online
• Most patients have a “statutory right” to their hospital record, albeit, not in the most friendly or useful way (see this example from Tufts University)
• Crowdsourcing, trustbuilding, and transparency are sweeping the business world. Health care is on the verge.
• Generation X are the attending physicians and medical directors, Generation Y are graduating from their residencies.

In the Shenkin article, it was proposed that a law be passed to require that a “complete and unexpurgated copy of all medical records, both inpatient and outpatient, be issued routinely and automatically to patients as soon as the services provided are received.” They do a great job of covering every known objection, “firstly” through “ninthly.”

My favorite is of the fear of “poor quality review” by peers and patients. They said that in 1973, it is “safer for them (physicians) to measure adequacy by academic degrees achieved than by competence demonstrated.”

The great thing I have learned pretty solidly from so many people by 2009 is that the medical community has so much support from patients and families – they want them to be great, they will only help. One patient said this at a recent continuing education course to room of us: “Can I just say thank you for paying attention in medical school, you are in my thoughts, you have my full gratitude.”

Let’s please remember these words to keep the conversation about ending secrecy an easy one, not a hard one. And, carry these two articles in our back pockets at all times.

*The American Medical Association has since reversed its stance on discriminating against gay, lesbian, bisexual, and transgender physicians and patients.

IFTF announces the release of From Caregiving to Caring: A New Approach to Civic Engagement | Institute For The Future

From our friends at the Institute for the Future, a kind of storybook report of an “emergent-reality” game they ran with United Cerebral Palsy on the subject of caregiving and caring in the future. If you’ve been following my delicious feed, you’ll see that I’ve been doing some reading about the concept of “aging in place” (or “aging independently” as tagged).

Why? What does caregiving and aging in place have to do with health informatics and patient empowerment (and Washington, DC, and diversity, my other two favorite things, for that matter).

Of course it has a lot to do with all of those things. The senior population is set to double by 2030, the overwhelming majority of them are going to live in conventional housing, they will have less kids, greater education, and potentially greater wealth than their predecessors (but with increasing disparities in this area). As it says in the introduction:

the challenges of caregiving become inextricable from the challenges facing health care systems, civic engagement, and declining cities.

I have been asking myself if the phenomenon of aging-in-place is an invention of various industries; I don’t think it is, right now (but please challenge me on that point). Various interactions in the last 6 months, from meeting Marty Cooper and Arlene Harris in the summer, to interacting with the Innovation Learning Network keeps bringing these themes up.

The report itself summarizes several technologically-powered (or empowered) approaches to supporting caregiving in the 21st Century, including basics on remote sensing, non-cash incentives (time-banks, for example), and transparent reporting and reputation systems.

I also like the way this data was put together, it seems very California Healthcare Foundation -esque with the signature of IFTF, both great things when it comes thinking of the future. See what you think.

Health Information Technology in the United States, 2009 – RWJF [Internet]. Robert Wood Johnson Foundation; 2009.

Himmelstein DU, Woolhandler S. Hospital Computing and the Costs and Quality of Care: A National Study

Health Information Technology is becoming a bit of a family affair, since my brother, who is an (excellent) ophthalmologist practicing in a fee for service environment, has been pondering electronic health records. His practice is far from the halls of the US Capitol, so I think his viewpoint is an important view of the reality of the overwhelming majority of medical practices in this country. It’s worth a read, so I’m reposting it here. Our conversation was stimulated by two pieces of research recently published (linked on the right).

Sure, you’re welcome to publish anything you want.

I agreed with your assessment. Just as a computer at home or having a smartphone doesn’t really save any time or money, it does make us more productive.

I have no doubt a well written emr will be beneficial to medicine, but I doubt it would be any huge time or money saver.

I dont know any doc with emr, that is more than marginally happy, and no one that saves money or time. And, the records I get are useless, as they are all macro’d out and two pages for a 30 second exam.

In fact they may cost insurers more, because some are marketed as ‘printing money’ for being able to tell you what you need to add in order to upcode the visit.

Right now, I think it is the quality of emr’s that is the problem, at least for ophthalm as we do alot of drawing and do alot of tests that need to be digitally incorporated.

But, I can’t imagine not having an employee file and pull charts wouldn’t save money. And, I would just love for a referring doc to just transmit a patient’s history to be incorporated into my records when they are referred. Likewise, instead of sending an email regarding a patient I am sending a retinal doctor, (which they probably forget), I would love to just send my records over so they know what I had the question about.

The big issue now is the privacy/audit issue. There are now companies that specialize in auditing charts for medicare and private insurers, and getting commission. Much easier to do with emr, as we can just transmit the chart. But, with paper charts, they can’t read them well, and they don’t plan on doctors copying dozens of charts, so they kind of give up.

What do you think? If we believe (as I do) that all doctors are driven to perform well for their patients, what’s the gap here, and what needs to be fixed?

Click below to see what my original response to him was….

Funny you should send that (studies regarding the penetration and impact of hospital electronic health records, click here and here) to me, I happened to be reviewing them at the same time.

I think it’s no different than the computer in your house – you spend money & time on it and you get a better quality of life. You probably wouldn’t throw it out the window. You probably optimize it to your life so that you squeeze maximum value out of it.

Davis K, Doty MM, Shea K, Stremikis K. Health information technology and physician perceptions of quality of care and satisfaction [Internet]. Health Policy 2009 May;90(2-3):239-246.

On that theme, this paper shows that physicians with EHR feel better prepared, more responsive to patients, more satisfied with their practices, with greater ability to provide quality care for patients

A lot of the problems in hospitals are that the doctors / nurses are not involved in setting the system up and optimizing it because hospitals usually have very skeleton medical leadership to maximize billing, so when they put in a computer system to make ordering easier, they could very well be wiring the same kind of care (good/bad) they were practicing before computerization.

When hospitals involve their doctors and nurses (and patients) as much as possible in setting things up, they usually find out that those people are more than happy to help, even from their own time, if it makes their lives easier. No one wants to wake up and find a computer on their desk that makes their job painful.

When they talk about Kaiser Permanente below, they’re right, we are seeing benefit in quality ( see this presentation, Kaiser Permanente is #1 in the US in mammography screening, and probably in the world now ).

I think overall doctors and nurses should get involved in putting these systems in. In eye care especially, because a lot of the stuff out there is designed for primary care and some specialization, but not very good at manipulating images, and just getting there in measuring for quality. It’s possible that we will end up paying more, somehow (reduced payments, increased taxes), but like the computer in your house, there will probably be increased quality too, it will be one of those things you can’t go without, like a CT or MRI.

Hope that helps…

Ted

Elbel B, Kersh R, Brescoll VL, Dixon LB. Calorie Labeling And Food Choices: A First Look At The Effects On Low-Income People In New York City [Internet]. Health Aff 2009 Nov;28(6):w1110-1121.

Farley TA, Caffarelli A, Bassett MT, Silver L, Frieden TR. New York City’s Fight Over Calorie Labeling [Internet]. Health Aff 2009 Nov;28(6):w1098-1109.

Does this change your mind? New York City

I’m a obsessed with fascinated by transparency because of my heritage working in an industry with built-in information asymmetry.

I feel, as colleague Jane Sarasohn-Kahn does, that “transparency is the new black.” I also have liked Senator Patrick Leahy’s comment: transparency promotes competition. In this case, transparency could promote competition with less optimal food choices.

Beyond the science of changing consumer behavior, I learned that transparency is also promoting competition with old ideas of trust within the consumer….read on.

Several papers/studies have recently come out about the impact of menu-labeling. I posted a news article about a preliminary report, then learned that there was conflicting data, so I decided to take a more thorough look, and there is more to look at.

In Calorie Labeling and Food Choices: A First Look at the Effects On Low-Income People in New York City, a case-control design (comparing New York to nearby Newark) showed that people in New York City definitely noticed calorie labeling after regulations went into effect in 2008, from less than 20 % to 54 %. People also were more likely to report having their choices influenced by menu-labeling. Their actual purchases did not show a change in the calorie counts purchased, so a little dampening of the enthusiasm with which I posted last is in order.

In New York City’s Fight Over Calorie Labeling, a different dimension of this discussion is presented: Trust. The importance of trust is growing, accelerated because of social media.

I almost felt the pages in my hand heat up as I read the account of New York City’s Health Department’s work to implement requirements for menu-labeling, and its contest with the New York State Restaurant Association. NYSRA filed multiple lawsuits to block required provision of the information based on constitutional (First-Amendment and federal preemption) principles. At the time this was happening, I recalled that the NYSRA’s arguments seemed eerily similar to those used to keep patients in the dark about their health information – the customer would be “confused”. A perception of lack of trust seems to strengthen the argument for regulation to provide truthful information.

In Report Suggests New York City Menu Labeling Law is Effective at Promoting Health Changes (data presented at Obesity 2009 Conference), the data is more supportive of actual food choice-changes, with a larger sample size, albeit with study authors being the New York City Department of Health team. It will be interesting to see that study in print.

And the answer is….

There isn’t a definitive answer about consumer food choices yet. That’s one impact. What about this one:

Requiring restaurants to provide calorie information to customers could also have a larger benefit. Restaurants, recognizing that some customers might be alarmed at the high calorie amounts of some items or seeing actual reductions in sales of those items, might reformulate their products to contain fewer calories or include more low-calorie items on their menus, in which case all customers would benefit. (Farley, et. al)

This is in fact what Le Pain Quotidien did, and what Hillstone Restaurant Group (owners of Houston’s) probably won’t do, because it’s refusing to comply.

Which restaurant are consumers going to trust? And therefore, which one will be more competitive?

As usual, I see a lot of analogies to health care.

Three more things

1. A concise and provocative way of saying what I say above can be found here, on the comments section of The Economist.

2. Why this is important, from The Biggest Loser. With information and support, people really can take control of their lives.

3. Let’s not forget about all the data our groceries have and have yet to fully unleash. It’s time for a food PHR.

Walker J, Ahern D. Insights for Internists: “I Want the Computer to Know Who I Am” [Internet]. Journal of General Internal Medicine 2009 Jun;24(6):0884-8734.[cited 2009 Nov 2 ]

Ok, this article isn’t titled that either, it’s titled Insights for Internists: “I Want the Computer to Know Who I Am” and it continues to complement the stream of information from peer reviewed literature that is more or less confirming what people who use robust personal health records already know. I discussed the issue of imaging test results earlier, as you may have read. That article was published in the radiology literature, which is significant, this one is published in the internal medicine literature, which is also significant. When the producers of the content themselves (internists, radiologists) convey what their patients want from them, it’s a powerful adjunct to the patients doing this themselves (and frankly, they’ve been doing it for a really long time…).

This paper was written by a team at Beth Israel Deaconness Hospital, and encompasses data from patient and physician focus groups conducted in multiple cities in 2006-2007. They asked them about how they manage their health information and how they would ideally manage health information. Some of the more important points:

• They mostly do it – keep their own records – except for the college student group
• They want full access to all the information. They know about their legal right to see their record, and understand that as currently constructed, this legal right doesn’t grant them functional access (think “73 cents”).
• Privacy: “worries that appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers.”
• “Strikingly, the health professionals professed far more concern about maintaining privacy than patients.”
• They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less

I both enjoy and get discouraged by reading this information because it should be more universalized than it is. But it will be. I’ll continue to invite the patient voice wherever I can, and continue to work with leading edge care systems (there are many) who take this information and innovate for patients.

With great thanks to the team at BIDMC and lots of nurses and physicians who are now asking the “why?” question about keeping things from patients. It reminds me of a letter I once composed to send to USA Today, that I never did, and through the magic of Mac OS X spotlight, I found it (and very quickly – amazing). Here’s what I wrote in 2005. Hmm..the passion didn’t fade.

In the USA Today article (“Prescription for Patients: E-mail”), the author felt from her experience that “patients could not be trusted not to abuse doctors time.” What we have known from the beginning is that patients can be trusted – they could always be trusted. And that’s the difference. We are supporting our patients’ trust in us, that we do not waste their time. Isn’t that what matters most?

Johnson AJ, Easterling D, Williams LS, Glover S, Frankel RM. Insight From Patients for Radiologists: Improving Our Reporting Systems [Internet]. Journal of the American College of Radiology 2009;6(11):786-794.[cited 2009 Nov 5 ] Available from: http://www.jacr.org/article/S1546-1440(09)00360-3/abstract

Actually, the title of this paper is “Insight From Patients for Radiologists: Improving Our Reporting Systems”

I’ve been heard to say that I don’t know where the rule that “the physician must see the test result before the patient” came from. (Once, someone in an audience responded, “From doctors!”) At the same time, there hasn’t been a lot of data that this de-facto rule isn’t what patients want.

That’s changing.

Not only do we now have information that this rule (“doctor sees results first”) is probably harmful, we are learning that it’s probably not wanted, from physicians, who are talking to patients.

This study is useful both because it addresses the latter issue, and because it is published in the radiology literature.

This study is a review of patient focus groups, with patients invited to discuss their experiences after having either normal MRI scans, or abnormal MRI scans. The results showed that patients had different opinions about who on their care team should discuss their imaging test results with them. However, when it came to getting a copy of those results, the patients were much less divided:

Participants were decidedly in favor of having the option to access test results immediately via an online system. Responding to open-ended questions about this option, they offered the following potential benefits: 1) such a system would allow them to better prepare for their next physician visits, especially to make the most efficient use of limited time with their physicians; 2) such a system would facilitate their ed- ucating themselves about their diseases or conditions; 3) it would empower them and give them more of a “partner”-type relationship with their regular doctors for decision making; 4) it would likely decrease the delay in taking the next steps in their care; and 5) it would facilitate their success in seeking social support.

I think people who have been working and practicing in health systems that offer patients access to their health information have known this for a long time – patients given the choice to access their information in real time achieve much greater benefit than those who are subject to delays, arbitrary or not. This published experience helps to confirm it.

As I have written about previously, the issue of sharing written imaging results has been controversial in the medical community. Imaging reports can be difficult to decipher by patients (sometimes, by doctors, too). They can also have a broad array of information and recommendations that need to be applied to the medical experience of a specific patient.

As a result, only a few organizations routinely share written imaging results with their patients. Does your health care provider/organization share your imaging test results with you? How, and in enough detail? If you’re a health care provider, what do you think of this information?

Singh H, Thomas EJ, Mani S, Sittig D, Arora H, Espadas D, Khan MM, Petersen LA. Timely Follow-up of Abnormal Diagnostic Imaging Test Results in an Outpatient Setting: Are Electronic Medical Records Achieving Their Potential? [Internet]. Arch Intern Med 2009 Sep;169(17):1578-1586.[cited 2009 Sep 29 ]

On the heels of a recent study demonstrating problems with patients receiving notification of abnormal lab test results, this study offers more insight in the area of diagnostic imaging results. And…the problems are just as concerning. Tip of the blog post, by the way, to Anita Samarth, who tweeted these findings initially to me.

When talking about “imaging results,” we’re referring to things like chest x-rays, CT scans, and MRI scans. These are often ordered to check for the possibility of cancer.

In fact, 11 times, results that were not relayed to patients after 4 weeks were of an abnormality that turned out to be cancer.

The interesting difference between this study and the study referenced previously is that it was done in a setting with a robust electronic health record (EHR) – The Department of Veterans Affairs.

What was studied was whether the (well) functioning EHR resulted in patients learning of abnormal imaging studies, not whether there was a working process to have these results brought to the attention of doctor in the first place.

The results are similar to those seen previously – Of 123,638 outpatient studies, 1,196 results were flagged “critical. 92 of these 1,196 critical notifications, or 7.7 %, did not result in timely notification, defined as 4 weeks. I’d say many patients and their families would not even classify “timely” as 4 weeks.

So the news is not very good with our ability to involve patients and families in their imaging results, either.

One other tidbit that caught my eye related to all of this is that if two doctors were involved in the notification instead of one, there was a greater likelihood of an alert not being acknowledged. That difference disappeared, though, when it came to looking for follow-up in the chart.

The issue of accountability leads me to what impressed me about this paper, and sort of not in a good way. There is no discussion of the potential for patients to assist in timely notification by having access to their imaging results online. This is especially surprising considering that the Department of Veterans Affairs manages a very good patient online access portal, MyHealthEVet.

Was this an oversight (not considering patient access as a solution), was this approach considered but not discussed in the article, or was this approach not considered a good solution at all?

As mentioned in a post on the Disruptive Women in Healthcare blog, it is the patient who will “care more about it or own it” the most when it comes to medical information. This is especially true, I think, when multiple clinicians are involved.

I have discussed the value of providing imaging test results to patients here previously – Several organizations already do this, including Beth Israel Deaconness Medical Center, and Palo Alto Medical Foundation.

Why not have this a standard (patient access), if we now know that in even the most technologically advanced systems, failure of notification can happen, and can potentially be devastating?

National Consumers League/AHRQ Focus group report: Prescription Medication Adherence (PDF)

Medication adherence, defined as “as any deviation from the prescribed course of medical treatment,” is a tough issue, and its costs to people and society are well characterized.

I am by no means an expert on medication adherence; the way adherence enters my professional sphere is in the form of technology solutions designed to improve it, typically through the use of electronic reminder systems and other tools, and new ones are cropping up every day.

While I have a lot of enthusiasm for others’ enthusiasm for tools like this, I have felt that the problem of adherence is fairly deep and complicated, and that technological solutions on the patient side may not be the most cost-effective way to start to address it.

Fortunately, this awareness is increasing – A few months ago I was contacted by the National Consumers League, who are working with the Agency for Healthcare Research and Quality to plan a national aherence campaign to improve prescription medication adherence.

What interested me about the work was the fact that the project would include (among other information gathering approaches) focus groups of patient and providers around the issue of medication adherence. I know focus groups aren’t perfect, but I am always drawn to any topic that includes patient perspectives, I can’t help it.

I just received a copy of the focus group report and reviewed it, with permission to blog about it here. Since I don’t see it available for download anywhere else, I’ll just make it available via this link (PDF). National Consumers League performed a literature search as a foundation for this work, and I have combined it with some data from the Deloitte 2009 Survey of Health Care Consumers, which also addressed prescription usage.

If they don’t fill the medication, there’s nothing to adhere to

First, it’s estimated that between 1/4 and 1/3 of people never fill their medications. The 2009 Deloitte Survey of Health Care Consumers provides a nice characterization and some of the causes, a big one of which is cost.

The relationship is key

As I read the focus group findings and some of the quotes below, I couldn’t help getting a visual image of two (or more – think provider and patient + family and community) people working hard to establish a relationship that just ends up with missed connections:

“Do I trust my doctor? You are entering a new relationship that is important as anything and you are wondering if he is the right person for you.”

“Sometimes the doctor explains it but usually at that point I forget and I don’t catch it.” (Short-Term Patient) “

“I agree with him, sometimes when the provider is giving you all of this information you have so many other things going through your mind, like I have to take medication or you know at the end when you get to the pharmacy that you are going to get that pamphlet and you are going to look at the bottom to see what you take once per day.” (Short-Term Patient)

“The doctors do not explain it, I usually ask the pharmacist or I will read the pamphlet.” (Short-Term Patient)

“Some of the medicines I would agree with it {patients are{unaware of why they are taking med}, they might have known when they started it but by the time they are on 10 different meds, maybe 40%, some meds they don’t understand what they are.” (Multi-Specialty)

Providers want to perform for their patients

There are definitely some provider quotes that made me cringe, however, reading carefully, it’s clear that health care providers are aware of the impact of the relationship and do their best to help their patients:

“I agree with her because not a lot of people ask questions, I spend 2 hours with my primary, she had a waiting room full of people and my daughter was a new patient and she spent one hour with her after I saw her.” .” (Chronic Condition Patient)

“If you are asking me personally {specialist}, I do try to explain the medicine because if I take the time doing that I can make the patient much more comfortable accepting my recommendation and the phone calls after the visits are less. The patient remembers 30% of what we tell them once the door is closed and sometimes I think it is less than that so if I spend the time up front explaining to the patient why this medicine is needed, I just find that the patient is much more comfortable accepting my recommendation and the patient has much less phone calls later on.” (Multi- Specialist)

Patients don’t want to be sick

This seems like stating the obvious, however, I think work like this helps to emphasize it. People will take medication when they feel they need it, and when they don’t they won’t.

“Well, maybe (stop taking medication} if I just didn’t think I needed it at that point. I was feeling better.” (Short-Term Patient)

“I agree, I mean the blood pressure medication you just can’t stop, but if it is something for the flu or a bad back or something after a while you feel better you will stop taking it.” (Short-Term Patient)

“I am always trying to minimize the number of medications that I have to take despite the fact that right now that I take 5 or 6, I just don’t like to take chemicals. I try to minimize the number that I take so I am constantly asking my doctor do I have to continue taking this, can I get off it and some don’t have to be forever but there are others that I am trying to get off from. So minimizing the numbers, I don’t like to take meds.” (Chronic Condition Patient)

In addition to the work of National Consumers League, the New England Healthcare Institute also just put out a report that supports broad thinking about the issue of adherence.

This information plus my experience makes me feel that there are actually a broad array of technology approaches to supporting adherence, including reminder systems (whose innovation should be incorporated into a comprehensive strategy to be sure). Those technology approaches may be most cost-effectively applied as close to the provider patient relationship as possible, to include things like:

• An after-visit summary after every encounter (whether on the phone, e-mail, or in person), with an accurate medication list that the patient + family + support can verify and ask questions about
• Education aids in every encounter to promote understanding of medication use to include the “why?” as well as the “what?”
• Accessible two-way communication (phone, e-mail) before, during, and after every encounter. Imagine that adherence could be impacted if a patient, provider, or their family/community could inquire about medication use outside of a formal visit. If that communication is non-existent or cut-off, how will patients and their families fare once they leave the pharmacy?

I want to say again that I do not study adherence for a living, so I welcome others’ thoughts about this in the comments. In the meantime, I am glad to see organizations like Naitional Consumers League and AHRQ engaging on this topic in the first place, and engaging by learning about patients and providers’ experiences. Let us remember that this is what a typical medication regimen can look like for a patient with diabetes and use it to guide our understanding (courtesy of Paulanne Balch, MD, Colorado Permanente Medical Group):

The story of Dr. Sidney Garfield: The Visionary Who Turned Sick Care into Health Care, The Permanente Press, 2009

One of my favorite things to do is ask “why?” in everything I do, and I have found that some of the best answers to that question come from learning about who and where we came from.

There’s actually a whole series of posts on this blog tagged with “where we came from.” In them, there’s a theme that today’s problems are often not unique (helping me to patient in their resolution). There’s also a theme that those who came before us set a direction for success that is worth knowing about (helping me to maintain fidelity of purpose).

With that in mind, I eagerly read The story of Sidney R. Garfield, MD, cited as the physician father of the Kaiser Permanente health system and innovator in four key areas of health care: Prepayment, Multispecialty Group Practice, Prevention, and Information Technology.

Part of my eagerness is the fact that I didn’t enter medicine with the intention of being a Permanente physician; I didn’t even know what that meant, until the end of my residency, when the Group Health medical group in Seattle became the Group Health Permanente Medical Group.

All I knew at that time was that I enjoyed an approach to medicine that provided patients exactly what was needed – no more, no less, to maximize benefit and minimize side effects. This was and is a simple enough formula in my head – where did it come from? Is it better? If it is how should it be spread?

Sidney Garfield’s “a ha” is described in the book as a simple change to his payment scheme as a physician – when he could not afford to keep a 12-bed hospital in the Mojave Desert open on worker injuries alone, he accepted an arrangement with the insurer of the Colorado River Aqueduct project. The arrangement was a nickel a day per worker prepayment for injury treatment (to abate high costs from transporting injured workers to Los Angeles for care), followed by the addition of a nickel a day per worker for comprehensive care. The rest is history. An innovative physician discovered that he could increase his revenue stream by discovering the causes of injury in the workplace and preventing them before the patient was injured.

In short, Garfield reversed the traditional economics of medicine, in which physicians are paid only when a patient is ill. Instead, Garfield would benefit by keeping his patients healthy and accident-free. It was a lesson he would remind himself of in later years with a newspaper clipping he kept in his desk drawer describing the tradition in ancient China, where a physician was paid only while his patient was healthy, not while his patient was ill.

Garfield also recognized an acute change in the transition from training in academic medical center – from collaboration across specialties to the solo practice model, and sought to replicate this in private practice:

“It has always seemed a paradox,” said Dr. Garfield in later life, “that in universities, which teach us medicine, we learn medicine under the highest type of group practice, but when we go out into practice, we revert to the old type of individual private practice.” Dr. Garfield’s great contribution to the evolution of group practice was to layer onto it the additional power of two other elements: prepayment and integration of the medical group with what he termed “adequate facilities” — “bringing the doctors’ offices, laboratory, X-ray, and hospital … all together under one roof.”

And in this model of care, the promise of computers seemed a perfect fit, as Dr. Garfield wrote about in Scientific American in 1970. Even before dreaming of the electronic medical record, though, hospitals were designed by Garfield with the intention of “The patient’s record reaches the doctor before he [the patient] does.”

The story details fairly significant challenges in the development of Permanente Medicine, from the lack of acceptance by mainstream medicine, to later conflicts between physician and business interests that grew along with the success of Kaiser Permanente.

Beyond the origins and creation of Permanente Medicine, I had a few other questions that were answered….What is the origin of the “Permanente” name?:

It was so named, at Bess Kaiser’s suggestion, after a beautiful wild creek on the San Francisco Peninsula, on the bank of which the Kaisers had a private retreat. The Spanish name — Permanente Creek — came from the fact it had a year-round flow of water, unlike many in California that dry up in the arid summers.

I also had questions about the spread of the model – what should be proprietary and what should be shared? This quote caught my eye:

You know institutions tend to become static; they build walls around themselves to protect themselves from change, and eventually die. You should fight that by opening up your thinking and your ideas, and work for a change.

And so, here we are in 2009, Tweeting and blogging about our ideas publicly. As to whether people have followed in his footsteps, I was impressed to read this quote:

Garfield summed things up from a patient point of view in a simple phrase, “The people of this country … don’t want to get sick.”

And then realize that I had sent this tweet last week, before reading the book, after taking a tour of one of Kaiser Permanente’s regional call centers. I sent it because every aspect of the design of this virtual care system was based on providing maximum value for the patient’s time. This doesn’t show that I’m as bright as Sidney Garfield; I think it shows that the entire system reflects his vision in 2009, and obviously so to this observer.

Given my Kaiser Permanente affiliation, I don’t want to imply that Garfield is the only visionary in health care. Far from it. Feel free to post about the visionaries in your care system (whether you are a provider or a receiver of care in that system) in your comments.

Reading the book is a good reminder that for as many problems as there are in health care today, there are as many Sidney Garfield’s in every health care institution and community, and they have a lot to teach us.

Casalino LP, Dunham D, Chin MH, Bielang R, Kistner EO, Karrison TG, Ong MK, Sarkar U, McLaughlin MA, Meltzer DO. Frequency of Failure to Inform Patients of Clinically Significant Outpatient Test Results [Internet]. Arch Intern Med. 2009 Jun 22;169(12):1123-1129.[cited 2009 Jun 26 ]

This is a wonderful and well-timed study that has significant implications in the era of the Electronic Health Record and the Personal Health Record. As well done as it was, I would have loved a section of inquiry to be added about “the impact of patient and family access on test result notification.” Read on…

It’s impressive that in 2009, believe it or not, there really aren’t firmly established processes for handling information about test results. A lot of what is done today is bred from custom, such as the infamous “no news is good news,” which the authors found was the protocol in 8 out of 19 medical practices studied. Everyone who likes this approach to test result notification, please raise your hand….

With that background the study team started at a very low baseline, thinking about what kinds of test results patients should be informed about, in what period of time they should be informed about them, and then analyzed medical records (5305 in all) to see if theoretical best practices were carried out., and about 7.1% of the time, on average (up to 26.2% in one Academic Medical Center practice), information to patients was not furnished about their abnormal test results. We can imagine what that might mean in a practice whose policy is “no news is good news.”

The authors looked at the impact of having an electronic medical record and found that practices with a “full” electronic medical record were no more likely to have gaps than one without IF they had a good process for managing test results. So, process and workflow trumps technology in this case.


What’s missing in good process?

So, the number of abnormal test results in this study not communicated to patients is alarmingly high. At the same time, I immediately drifted to what’s missing in the process. The authors listed these steps as a good way to manage test results:

1. All results are routed to the responsible physician
2. The physician signs off on all results
3. The practice informs patients of all results, normal and abnormal, at least in general terms
4. The practice documents that the patient has been informed
5. Patients are told to call after a certain time interval if they have not been notified of their results.

Maybe this is good practice today, but what do our patients and families want in the era of the personal health record and full transparency (73 cents style)? How about this:

Good process for managing test results, patients and families at the center

1. All results are routed to the responsible physician and the patient and their proxies, if specified, at the same time
2. The physician and the patient and their proxies, if specified, sign off on all results (in a current PHR installation, this might mean verification that the patient has viewed the result…read on)
3. The practice informs patients and their proxies, if specified, of the meaning of all results, with specific recommendations to be made based on the information
4. The practice documents the shared decision made by the responsible physician and the patient based on the information obtained from results
5. Without 1-4 above, the practice reaches out to the patient via the most appropriate means (letter, telephone, secure e-mail) to achieve notification and shared decision-making.

If we think about it – in the era of the personal health record, do we really want to tell patients if they haven’t heard something within a certain time interval, they should call us?

Do we really want to continue a “no news is good news” policy, at the risk of “no news” meaning 7.1% of the time someone may be hurt in the process of care?

I think it’s important to remember that the ultimate reason a test of any kind is ordered in health care is for one reason – “to reduce uncertainty.”

It would be great in a future study to analyze the impact of patients having access to their test results in real-time or near-real time, to see what the rate of failure is, and also dig deeper, at the rate of understanding of what test results mean. This is the sweet spot for physicians and nurses, who excel at using test results to reduce uncertainty in the context of a patient’s overall health.

In terms of whether or not the new/improved “Good process” is more time intensive or not than the regular “Good Process,” I don’t think it is more time intensive. I think this is a great item for discussion in the comments. Let’s talk about the cost-benefit of doing things differently.

It’s worth noting that in the first quarter of 2009 alone, 5,078,442 test results were viewed by Kaiser Permanente patients and/o their proxy individuals on KP’s My Health Manager personal health record. In many of those instances, the test results were delivered to the patient at the same time as the physician. That’s a lot of experience both to tap into, and to understand that the old process is already changed forever for lots of Americans and the teams who care for them.

With thanks to the authors for a timely and useful investigation into an area of health care where we all want to improve.

What Only the CEO Can Do, A.G. Lafley, Harvard Business Review, May, 2009

I used to spend a lot of time struggling with this question, and I see many people still struggling with it, especially in Health Information Technology. I see a focus in a lot of places on making sure physicians are happy in order to be successful. The struggle is normal, this is a controversial idea. This article from HBR says that it’s the E=MC2 of customer loyalty.  

I’m not sure I agree, though.

I last did some deep-dive business study research on this a few years ago and came to the conclusion that patient happiness and doctor happiness are probably co-mingled. My work experience in several places has always worried me that excessive focus on the happiness of one population (doctors, nurses, allied health, anyone) puts patient happiness at risk, so why not just focus on their satisfaction as the key to everyone else’s?

In the article Employee Happiness Isn’t Enough to Satisfy Customers , the authors state:

The idea that employee satisfaction simply rubs off and benefits the company is wishful thinking.

And then go on to state that there’s no evidence that satisfied employees equal satisfied customers.

In the feature article, What Only the CEO Can Do, A.G. Lafley, chairman and chief executive officer of Proctor & Gamble notes throughout his interest in customer satisfaction first, in crafting the role of the CEO (much of it based on Peter Drucker’s philosophy)

Drucker also wrote that the purpose of a business is to create a customer. P&G’s purpose is to touch and improve more consumers’ lives with more P&G brands and products every day. Of all our stakeholders, both outside and inside, the primary one is the consumer.

And

As for employee stakeholders, we believe that P&G people are the company’s most valuable assets. Without them we would have no P&G brands, no P&G innovation, and no P&G partnerships. However, putting employees ahead of external stakeholders, especially consumers, would result in a more internal—and, arguably, more short-term—focus. P&G people are inspired by the company’s purpose and motivated by how they can personally touch and improve consumers’ lives.

In the article, Lafley talks about how the CEO shapes values and standards, and how in his role, he shifted the values more toward placing the customer’s needs first, as he felt that values prior to his tenure had evolved to place employees’ needs ahead of consumers. It’s an interesting read throughout to discover how the metrics of P&G are based on customer loyalty and penetration of P&G satisfaction into consumers’ homes.

I like articles like this because they connect the philosophies of some of our best health care organizations, like Mayo Clinic, where it is said,”The best interest of the patient is the only interest to be considered.”

I connect all of this to working with physicians through the understanding that physicians are passionate about helping patients succeed and often put this success ahead of their own emotional success, because they will do whatever it takes, however inefficiently or indirectly they must do it in the systems they work in.

If I/we can allow them to fulfill their passion, to support patients where they live, work, and play, in being successful, as efficiently and directly as possible, their emotional success will ensue, or as it said the Employee Happiness article,

…engage employees by giving them both reasons and ways to please customers; then acknowledge and reward appropriate behavior.

So I know this is a controversial idea, and my research may not be as deep as anyone reading this post – I welcome your comments.

Full Text, ARRA

My approach to regulations and legislation in health care is to enjoy and savor them by reading the actual text. For me, summaries tend to obscure the problems that people who create these are trying to solve. This is what makes this part of the job fun.

I’ve read Title XIII-Health Information Technology with an eye toward the things I am most interested in and will quote those passages below, for informational purposes. Remember that this is a blog which means that corrections and improvements are welcome in the comments. And I’m not an attorney, this is for informational purposes only, and there’s good information in here.

Subtitle A – Promotion of Health Information Technology

Section 3000 Definitions

Health Information Technology includes uses by patients:

‘‘(5) HEALTHINFORMATIONTECHNOLOGY.—The term ‘health information technology’ means hardware, software, integrated technologies or related licenses, intellectual property, upgrades, or packaged solutions sold as services that are designed for or support the use by health care entities or patients for the electronic creation, maintenance, access, or exchange of health information

Section 3001 Office of the National Coordinator For Health Information Technology

Support for patient/consumer groups

‘‘(7) ASSISTANCE.—The National Coordinator may provide financial assistance to consumer advocacy groups and not-for- profit entities that work in the public interest for purposes of defraying the cost to such groups and entities to participate under, whether in whole or in part, the National Technology Transfer Act of 1995 (15 U.S.C. 272 note).

Section 3002 HIT Policy Committee

The sections of this Committee’s charge that cover things like patient access and empowerment are listed in “Other Areas For Consideration.” At least they are there at all.

‘(iii) Telemedicine technologies, in order to reduce travel requirements for patients in remote areas. ‘‘(iv) Technologies that facilitate home health care and the monitoring of patients recuperating at home. ‘‘(v) Technologies that help reduce medical errors. ‘‘(vi) Technologies that facilitate the continuity of care among health settings. ‘‘(vii) Technologies that meet the needs of diverse populations. ‘‘(viii) Methods to facilitate secure access by an individual to such individual’s protected health information. ‘‘(ix) Methods, guidelines, and safeguards to facili- tate secure access to patient information by a family member, caregiver, or guardian acting on behalf of a patient due to age-related and other disability, cog- nitive impairment, or dementia. ‘‘(x) Any other technology that the HIT Policy Com- mittee finds to be among the technologies with the greatest potentiof health care.

There is support for patient involvement on the HIT Policy Committee (nominees were sought recently for this Committee):

‘‘(G) 13 members shall be appointed by the Comptroller General of the United States of whom— ‘‘(i) 3 members shall advocates for patients or con- sumers; ‘‘(ii) 2 members shall represent health care pro- viders, one of which shall be a physician; ‘‘(iii) 1 member shall be from a labor organization representing health care workers; ‘‘(iv) 1 member shall have expertise in health information privacy and security;

Section 3003 HIT Standards Committee

Membership to include consumers:

‘‘(2) M.—The membership of the HIT Standards Committee shall at least reflect providers, ancillary healthcare workers, consumers, purchasers, health plans, technology vendors, researchers, relevant Federal agencies, and individuals with technical expertise on health care quality, privacy and security, and information.

Tomorrow, Part II of Title XIII

Hawn C. Take Two Aspirin And Tweet Me In The Morning: How Twitter, Facebook, And Other Social Media Are Reshaping Health Care [Internet]. Health Aff. 2009 Mar 1;28(2):361-368.

Note: the article no longer requires a subscription for access (3/14/09)

The much anticipated health information technology issue of Health Affairs, and in it is an article written by Carleen Hawn about Social Media in Health Care. The links above to to the Health Affairs site, but it appears a subscription will be required to view it, so hopefully readers have access to an institutional or other subscription to read it.

The genesis of this article was a discussion that was started in July, 2008, at the American Board of Internal Medicine’s forum on Patient Centered Care, where i presented about some of these concepts. This was followed up with discussions with myself and other leaders in the field, such as Jay Parkinson, MD, from HelloHealth, Bob Coffield, a well known legal expert in the area of social media, as well as real patients.

I actually attended the briefing announcing the release of this issue in Washington, DC, and was pleasantly surprised to see that the article is billed on the front cover of a very full catalog of scholarly works. Who would have thought 4 years ago that an article about social networking/media would be front cover material for the Health Affairs issue on Health Information Technology. This says a lot about the impact that social media, or perceived impact, in this area of health care! At the same time, I think Matthew Holt correctly points out that there’s a part two (and three and four) to be written covering what’s below the tip of the iceberg.

In addition to the information mentioned in the article, Carleen Hawn also consulted with some of my favorite innovators in health care, including Scott Shreeve, MD, and the team at the Kaiser Permanente Sidney Garfield Center for Health Care Innovation.

In addition to these contributions, I would also mention the contribution of the California Healthcare Foundation, whose leaders, including Veenu Aulakh, MPH, Sophia Chang, MD, MPH and Sam Karp, stimulated the development of the crowdsourced definition of Health2.0 mentioned the article with a simple question to me: “Ted, what is Health2.0?” (my answer was, “I don’t know, let’s ask the crowd.”)

And, I would also like to mention that innovation like this comes from health care organizations and systems that are able to say,”Not everything has been tried before,” and in my case this is/was Group Health Cooperative, who have learned from our early blogging experience and now bring their physicians and staff online for the world to learn about what they are doing to reinvent primary care. I’ve been engaged in maybe a few conversations over the past few years about why health care organizations should be transparent and it’s helpful for everyone to have an example of why this works well for everyone.

Thanks again to Carleen Hawn, The Health Affairs Team, and The American Board of Internal Medicine Foundation for taking the time to explore this topic for America’s patients (that’s all of us).

Adolescent Access to Online Health Services: Perils and Promise. Journal of Adolescent Health. [cited 2009 Feb 3]

One of the authors of the article and former colleague from Group Health Cooperative, David Grossman, MD, tipped me off to its publication, and I’m glad he did.

This piece adds to a growing volume of work that doesn’t ask “why?” patients should have online access, but work that asks “why not?” for patient online access. Unfortunately, the peer reviewed literature lags significantly behind what is known in the world about patient online services – it points to some of the deficiencies of peer review in a Web 2.0 world that I an others have written about previously.

One disclosure is that I am an acknolwedgee and was one of the individuals interviewed by the author, although I was not involved in any significant way in the content or conclusions reached by the author.

The article covers online patient access for a vulnerable population, teens, and the author makes an astute observation about their vulnerability in today’s health system, which parallels their vulnerability in online health systems:

Adolescents, as a group, do not typically advocate on behalf of their own health care needs, and generally are not the primary subscribers on health insurance plans. As a result, teen needs may not be among a health care organization’s highest priorities.

From my experience, many of the online programs that exist for adolescents are there because of the support of a handful of dedicated pediatricians and family physicians as well as their nursing and allied health colleagues who care for this group. That’s changing, though, as parents who enjoy this access for themselves are asking how their entire family can participate.

There’s a very nice table in the article about what, specifically, leading edge organizations are doing to provide teen access. This table alone should serve as a guide to understand what conventional limitations are. However, I would stress the word “conventional,” because as the authors point out, much more should be possible in the care of adolescents, so organizations out there looking to implement teen access hopefully would use this information to provide even more service – this is the foundation of innovation after all!

In addition to the useful summaries of potential beneficial uses of teen access, the article includes a fairly good review of the benefits of personal health records in general.

The other thing I liked (and like in any article like this) falls into the category of what I call “myth explosion,” which is where a critical eye is applied to assumptions made about how things might work if some thing new is tried. (In my LEAN work, I used to say, “not everything has been tried before.”) This includes concerns about parents coercing teens to provide passwords to their online health information, which is successfully challenged as a concern, in my opinion. Beyond thoughtful analyses like this, I think patients and their families are the best at myth explosion and do it quite readily. With that in mind, a great follow-on to this article might be one written about the experiences of teens and parents involved in the adolescent access programs now underway.

The one other idea that comes to mind is the fact that the recent HIPAA guidance put out by the Department of Health and Human Services has no information in it regarding adolescent access. I think it might be useful for the next chapter of that guidance to include this group, to make something that seems difficult to so many not seem so.

Thanks to Megan Moreno, MD, for her work to change the question from “should we?” to “how and when?” Hopefully, soon. If there are any teens or parents out there using this access or want to use it, please feel free to comment on your experience as it is or as you would like it to be.

Johnson KM, Chark DM, Chen QP, Broussard A, Rosenbloom STM. Performing Without a Net: Transitioning Away From a Health Information Technology-Rich Training Environment [Internet]. Academic Medicine. 2008 ;83(12):1179-1186

This article caught my eye because it’s the first look (that I’ve seen anyway, let me know if there are others) of what I have been calling the “California effect.” No, not the California effect of passing laws that limit patients access to their own medical data online (which has been ineffective). This is the California effect that was effective, around banning smoking indoors. What happened after that was that a whole generation of children grew up and moved to other places in the U.S. and asked their communities, “why is this place that allows smoking indoors so abnormal?” I saw a hint of it at Group Health Cooperative as well, where patients leaving the health system would ask their next doctor, “Where’s your EHR/PHR?”

This study doesn’t study patients, though; it studies doctors. Ones that have been trained in a technology-rich environment at Vanderbilt University, and who then begin working in a diversity of environments that use and don’t use Health Information Technology tools. The authors chose to study the electronic health record component, and not the personal health record component. More on that later.

328 physicians out of a total of 679 graduates were surveyed. The authors excluded people who had undeliverable addresses in the denominator, but I would prefer to look at “intention to survey,” so depending on your approach, at least more than a 50% response rate was obtained. It’s important to note that 54 percent of the respondents reported working at an academic medical center, so there’s a heavy sampling of AMC work environments here.

Absence of HIT was associated with lower perceived quality of care in many domains surveyed, including safety, efficiency, and system learning. Of considerable note, this group reported having less confidence in their knowledge about drug interactions and drug management than they did during their training, even months after changing institutions. Additionally, many respondents felt weakened in their ability to prescribe medications safely.

That’s the headline. However, looking deeper. There are a few curiosities:

1. Only 23 percent reported HIT as a “positive” factor in the decision to practice in the new institution. 11 percent reported it as “negative.” The luke-warmness and negativity could be dependent on the specific implementation of HIT at the “new” place, of course.
2. “I was better able to interact with patients/families” was not statistically significant, meaning that people with “Less HIT” didn’t feel that they were better able to communicate with patients and families at Vanderbilt.

And this interesting summary statement:

One implication of this study is that if HIT reduces error rates but is not yet ubiquitous, administrators at technologically sophisticated environments might need to expose their junior physicians to unsupported and less safe care environments as learning experiences.

The implication of the above is that resources should be spent on introducing physicians-in-training to paper based practice to support safety in a potentially unsafe environment.

The authors asked about the impact of HIT on communicating with patients and families, and the study shows that there wasn’t a significant one attributed to HIT in the Vanderbilt institution, a place that is advanced in the area of personal health records (from my limited knowledge, someone please add information about that if you have it).

Even if we assume that a HIT-enabled environment is always “more safe” than one that isn’t (and you could read the Health Care Renewal Blog to challenge that assumption – safety is not inherent in HIT, it’s in the system that it’s a part of), I think the resource should go to training skills that work in any environment, HIT or not. I am speaking of process improvement, collaborative/enterprise thinking, and patient centered care. This includes things like analysis of clinical workflows to look for and eliminate waste, learning how to write to patients and involve them and families in their care and understanding of their medical information, and leadership/support of entire care teams. On the process improvement work, there is much that can be done in a paper environment even before HIT is implemented. It’s likely that doing work that reduces waste and increases standardization makes HIT easier to implement. At the very least, creating a culture of looking for problems and focusing on the impact to the patient is as important within a HIT-enabled environment as one not-so-enabled.

Speaking from a LEAN (Toyota Management System), problems are gold, and this study is very helpful. I think it points to an early “California effect” with regard to HIT. It’s possible that clinicians trained in these environments will be more observant of not just HIT, but well-implemented HIT. The study also points out that we may still be thinking of Health Information Technology as a physician endeavor. I think it would be interesting for a large health system that has a fully deployed personal health record to survey patients who have left and ask about their confidence in managing their health and staying healthy.

“Know Your Numbers, Outlive Your Diabetes: 5 Essential Health Factors You Can Master to Enjoy a Long and Healthy Life (Marlowe Diabetes Library)” (Richard Jackson, Amy Tenderich)

For the last several months, at least since Amy Tenderich, Jane Sarasohn-Kahn, and I served on a panel for the California Commonwealth Club, when people have suggested I read this book or that book, I have said, “Amy Tenderich’s book is at the top of my list, that’s what I’m reading next.”

And I stuck to that promise.

Why? The medical literature I read usually talks about patients (people) in the abstract/third person, which is great for focusing on the science (sort of, I’m not sure anymore), but maybe not the art. That and the fact that before Amy, Jane, and I went on stage, I noticed that Amy checked her blood glucose and had a protein bar ready to go in preparation for our hour-long discussion. There are things I am not going to understand about patients’ health experiences if I don’t listen to their experiences to start with.

I decided to combine the reading of this book with 2 experiments for myself. One, to use Twitter to write notes to myself about the book, two, to complete a board certification module for my specialty (Family Medicine) after reading the book. For the first experiment, there’s a good record of the first several chapters here. Part way through I thought that this was probably not as relevant to people following my Twitter feed as me, so I stopped. I would do it again, though, because the notes are helpful, maybe from a different account.

As you can tell from the linked notes on Twitter, I enjoyed the book and think it added a lot to my knowledge. Believe it or not, there are some details about some of the things we do as doctors that are not really explained to us except in the experiential part of doing what we do, such as how to organize the care of a condition, from the big picture. The authors laid that out extremely well using the diabetes health account concept. Diabetes was never taught to me that way – it was kind of a jumble of all the different diseases a patient can get and how to prevent them, not about how to organize and focus efforts. Leave it to a patient to do that because they don’t just have to tolerate having these conditions – they live with them.

I also noticed that a book written for and by patients doesn’t start with pharmaceutical therapy, it starts with knowledge, which may be the opposite way health care thinks about approaching condition management. I have to further celebrate Amy’s approach to thinking about diabetes in non-militaristic terms. The war analogy is pervasive in health care management (“front line staff,” “triage”) and I think it sets up the wrong type of relationship behavior with patients behind the scenes. It is great to see a patient confirm from their experience that it sets up the wrong type of relationship behavior with their condition:

People often refer to experience with a disease as a battle, such as “her battle with cancer..”…We think think this reference is wholly inappropriate for diabetes – one of the few chronic diseases with which patients have the power to both feel physically well day to day, and to live a long and healthy life….If you think of your diabetes as a battle, you’ll always be stuck in a miserable war. Make peace with your diabetes, and you’ll be at peace with yourself.

(let’s also stop using battlefield terms behind the scenes, we are not at war with patients, we are at peace with them)

As helpful as this book is, I think there’s great potential for a sequel (with Amy’s perspective). There’s new information about the value of home blood pressure monitoring, and new ways to check for retinopathy that don’t require a trip to the eye doctor. In addition, there’s now information about some of the newer drugs mentioned that may cause their harms to be underemphasized in the book. And I think Amy would be well suited to expand on some of the Web tools that are out there, including her very own, Diabetes Mine, and how they are helpful, from the patient perspective.

These are minor critiques, and actually not critiques of Amy, because it’s the job of doctors to have the most up-to-date information (and provide it to patients) in actual health care experiences. This brings me to a closing thought, which is that reading about the work of Amy and other leaders like her makes it clear that Health2.0 is not about shifting the power away from anyone, it is more about valuing the contribution of each role. As Amy and I discovered after our talk at the Commonwealth club (“you mean, you didn’t know the answer to that question either?”), neither of us is the true expert on everything, but we are both necessary, and I think it’s very valuable for a health professional to know how necessary the patient is by listening to their experiences.

Now that Amy has done a great job (truly!) in making it clear what someone with diabetes needs to focus on most, my follow-up is to look at some of the online tools available to help with that. Amy’s approach seems to lend itself well to a tool for health that’s as straightforward as mint.com is for finances. I will write on that in a future blog post.