Patients demand: ‘Give us our damned data’ – CNN.com. Regina Holliday, Jen McCabe’s work highlighted on CNN, at DCA airport (people meet where they can in this web2.0 world…)
Posts Tagged ‘patients want their data’
Patients demand: ‘Give us our damned data’ – CNN.com
January 18th, 2010 | Popularity: 4% 0 comments | Leave a replySharing Data per Patient Preference: Ideas on implementing the CMS Rule from John Halamka, MD
January 18th, 2010 | Popularity: 3% 0 comments | Leave a replySharing Data per Patient Preference – An analytical look at how patient preference -based data sharing might be operationalized. Thanks again, John. It is good to see posts about this part of the CMS rule that discuss how this can be done instead of how this cannot be done.
Now Reading: Proposed CMS Rule for EHR Incentives (from a patient access perspective)
January 10th, 2010 | Popularity: 9% 18 comments
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
• Highlight, page 16
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.”
• Highlight, page 17
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)
• Highlight, page 20
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.
• Highlight, page 23
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.
• Highlight, page 26
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.
• Highlight, page 27
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
• Highlight, page 30
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.
• Highlight, page 32
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.
• Highlight, page 35
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
• Highlight, page 37
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.
• Highlight, page 40
meaningful use of certified EHR technology should result in health care that is patient-centered, evidence-based, prevention-oriented, efficient, and equitable.
• Highlight, page 40
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.
• Highlight, page 40
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
• Highlight, page 40
Stage 2: Our goals for the Stage 2 meaningful use criteria
• Highlight, page 41
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
• Highlight, page 41
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.
• Highlight, page 46
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
• Highlight, page 50
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
• Highlight, page 50
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)
• Highlight, page 54
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 )
• Highlight, page 58
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.
• Highlight, page 58
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?)
• Highlight, page 62
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)
• Highlight, page 63
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)
• Highlight, page 68
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)
• Highlight, page 86
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)
» Read more: Now Reading: Proposed CMS Rule for EHR Incentives (from a patient access perspective)
OpenNotes Project
December 24th, 2009 | Popularity: 6% 2 commentsOpenNotes Project – Robert Wood Johnson Foundation funded study on allowing patients to read physician notes.
There’s a nice 4-minute video on the home page discussing issues related to sharing medical records with their patients. Tom Delbanco, MD also was on a n IHI podcast regarding this project recently, it’s worth a listen. The podcast was great; Tom made a comment, though, about Group Health Cooperative’s electronic After Visit Summary that was incorrect. It’s a good lesson to all of us that if you mention another organization that you are not affiliated with in an interview and what they are doing or not doing, we should double check our facts 
.
Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”
December 18th, 2009 | Popularity: 6% 9 comments
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.
Why “Doctor Sees Results First” is harmful
December 14th, 2009 | Popularity: 5% 10 commentsHope Leman, who just did a wonderful job interviewing me on her blog, also asked me about this quote in a previous post:
“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.”
She asked me to clarify, which I am happy to do. Below is a graphical image of what two very important studies just showed:
Hope’s question:
I don’t see how that would be harmful. Do you mean because he would then be overly persuasive and the patient would be a weaker position info possession wise?
To clarify, I did not mean that it’s harmful for doctors to see test results before their patients. Not at all. I think if a physician seeing a result and then informing the patient in a timely manner is ideal. I also think the patient seeing the result and then having a dialogue with the patient is ideal, too, relative to what is not ideal.
What is not ideal is a significantly abnormal result coming back and the patient not finding out about it, for obvious reasons.
So what I meant was, “a workflow that doesn’t allow a patient to see their test results in a timely manner is harmful.” When a system requires the doctor to see the result before the patient can, there’s a risk that the patient will never get it. When there is failure to notify, there could be failure to treat, which can be devastating.
Beyond this risk, patients and families are not demanding that their doctors see their test results first anyway, so this is just another reason to change the rule “patient doesn’t get to see their test results until the doctor does.”
The key is patient (and family) access to their own results, so they can assist in the accuracy and safety of their care. And they will do it, as I quoted previously, from the Disruptive Women in Health Care blog:
Although we may not think it’s our responsibility to read our operative report or a pathology report… it could mean the difference between a good or bad result in the best case scenario, or life and death in the worst case scenario. In the end, your health information is just that…..yours. No one will care more about it, or own it, in quite the same way as you.
I hope this explanation was better; if not, comment away!
Now Reading: Patients actually want their entire medical record
November 13th, 2009 | Popularity: 6% 9 comments
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?
Now Reading: Patients want their radiology test results
November 5th, 2009 | Popularity: 4% 6 comments
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?
