This is second of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension. We’re now past the discovery that something may be wrong, and at follow up with a personal physician. Recall that 1/3 of patients do not make it this far.

Click on the image to see it larger size

Patient Story (Frydman)

I was convinced that the HBP was just a temporary event due to stress and that by the time I had it checked by my friend the problem was gone. The measurements showed that I was completely mistaken. For the first time I was faced with the possibility that I was not really in control with a health problem. Even after a couple of measurements and a strong admonition from my friend to take every day the medicines he prescribed, I was still inclined to deny the reality of the problem. I remember telling myself: ” even if the problem is there to stay I can still afford to wait another 6 months before I become a compliant patient.” And I kept being this stupid and stubborn patient for another 1 1/2 year.

He said: “this is very dangerous. We do not want you to experience a catastrophic event. Therefore you must be treated”

For some reason, that is NOT the message that makes me understand that I really must be treated. There is clearly a missing piece in the way the doc is interacting with me, his friend. By spending maybe 3 to 5 minutes explaining the rational behind the proposed treatment he would have transformed the interaction from - he is forcing me to change - to - I understand why I must change

I was supposed to go back but I didn’t do it. During a business trip I did try checking my BP with a home tool a few times and every time the BP was well within the norms, helping me be even more in denial. But then the next time I went to my friend’s office the data still showed clear HBP. Go figure!

Clinical and Public Health pearls (Houston-Miller)

• Hypertension is the #1 reason for physician office visits in the United States (9.7% of all visits)
• 20 % of patients diagnosed with high blood pressure do not actually have it; it is falsely elevated in the doctor’s office (called “white coat hypertension”). This results in unnecessary (and costly) treatment.
• 10 % of patients measured with normal blood pressure in the doctor’s office actually have high blood pressure (called “masked hypertension”)
• In recognition of the above, many health plans and Medicare reimburse for “Ambulatory Blood Pressure Monitoring” (CPT Code: 93784), which is a 24-hour, round-the-clock, blood pressure measurement. This type of measurement is typically a research tool and not used in clinical practice. There is no reimbursement for home monitoring currently.
• The average of 2 home blood pressure readings is more predictive of mortality than screening blood pressures taken by nurses and technicians
• 32 - 53 % of patients stop their medications by the end of the first year
• A patient like this is considered “high risk” because he is male and likely to have another condition (such as high cholesterol)

Comment

Where is the data? The diagram and patient’s experience illustrate the fact that the information related to the diagnosis and treatment is typically localized to the provider, and not the patient. When a diagnosis is made, lab studies and medicines are ordered, and the patient’s health plan will receive a claim for the office visit. The patient is typically instructed to come back to the doctor’s office for reassessment, rather than doing self-assessments, and the patient is usually not given a treatment plan, or access to blood pressure and other data generated in the visit.

What’s missing? As in the previous vignette, the patient is without information regarding the significance of the condition, or resources to learn more / compare with other patients’ experiences. In my own searching, I have found limited social networking resources online for blood pressure management, relative to other conditions such as diabetes. This is beginning to change, though, as more organizations, such as the American Heart Association, become active in promoting self-management and personal health records.

Tomorrow, ongoing management and maintenance of blood pressure control. Comments welcomed, of course.

This is first of a multi-part series on a patient’s experience managing a chronic condition, in this case hypertension.

Click on the image to see it larger size

We’ll start with the patient story, told by Gilles Frydman, followed by clinical and public health commentary by Nancy Houston-Miller, RN, BSN, FSHA. At the bottom of this post, I have added information about our patient and clinical expert.

Patient story (Frydman)

I have always had at least a yearly checkup. 3 years ago, while spending a few weeks in the Texas portion of the Chihuaha desert, I noticed that I experienced growing moments of dizziness whenever I would stand up, tie my shoes or leave my bed. During my stay in Texas, a family member had a bicycle accident and ended up in the hospital, located 30 miles away because everybody feared a serious concussion or even worse. While waiting for results from the ER I asked to have my blood pressure checked. A nurse did check it and told me the equipment was probably deffective or something else went wrong and wanted to check it again. The second check showed an extremely HBP (200/130). I was instantly seen by a cardiologist and prescribed a drug to lower the HBP, with a warning that I was at high risk to suffer a catastrophic event if I didn’t bring the HBP under control. And then I was sent home, without any additional Information RX. (A medication was prescribed and Frydman was asked to begin taking it)

Clinical and Public Health pearls (Houston-Miller)

• Blood pressure of 200/130 typically requires immediate assessment and treatment, with expedient (within 1 week) follow-up
• 29 % of the U.S. population has hypertension, 76 % are aware of it
• 1/3 of those found to have high blood blood pressure do not follow up
• 10.6 % of Californians are diagnosed with high blood pressure
• 12.4 % of an employee (working) population are typically diagnosed with high blood pressure

Comment

Although our patient was uncertain about whether a medical record was created in the Emergency Room, it is possible and likely that one was created, which contained the blood pressure readings and medication administration or prescription records. Because the patient was not given this information on discharge, the data involved in this episode remained with the provider who originally assessed the blood pressure. Patients may learn that they have high blood pressure in a variety of environments - a health fair, a doctor’s office, an employer-based screening program. In these cases, patients are typically asked to visit with their health care provider for diagnosis and treatment. Recommendations for interval monitoring are typically not made in these cases (today).

Read the rest of this entry »

We recently facilitated an exercise involving a patient, a clinical expert, and interested stakeholders at the California Healthcare Foundation, to look at the way a chronic condition (in this case, high blood pressure) is managed.

Over the next several days on this blog, I will step through our patient’s real story, along with clinical and public health commentary.

I created this cartoon from the exercise, suitable for downloading and discussion (
PDF version can be downloaded using this link or click on the image directly to see a larger version):

The cartoon is based on this output of our exercise which began with our patient’s story, clinical commentary, and the creative use of paper:

Feel free to answer the question in the title of the post at any point.

I will explain the meaning of the symbols and the meaning as we go along.

By the way, the exercise resulted in this future state, which I’ll go over on the last day:

Tomorrow: Step 1 - Initial Discovery

Jonah Froelich, MPH, California Healthcare Foundation’s resident expert on health information technology sent this along to me and I wanted to post it. It shows the spirit of health professionals who are changing the way they practice because they want to perform better for their patients. Scenes like this are happening all over the United States. Thanks and congratulations to West County Health Centers and (again) to the Redwood Community Health Coalition for sharing their enthusiasm with patients everywhere.

I am posting this presentation that I created, commissioned by the California Healthcare Foundation, and supported by the Center for Information Therapy and indirectly, Group Health Cooperative.

It is the presentation that created the need for me to define Health 2.0. It is also the last presentation I will give as as a Group Health employee, and the only time I will be able to give it, due to my my career change.

It’s in slide show format, so feel free to click on any of the images and page through. I had a lot of fun putting it together because it allowed me to reflect on what I learned and how much I have changed in my thinking in just the past year. May the same trend continue.

I would like to extend special thanks to Crosskeys Media, producers of the excellent show “Remaking of American Medicine,” for allowing me to use portions of the content in the interest of supporting patient centered care. I encourage anyone interested in this topic to view or purchase the show. There is an educational license available that allows for use in teaching (as a whole piece, not intended for editing by users). It’s worth it.

Feedback and comments welcomed.

More information about connecting California’s Consumers, tip from Larry Leisure, President of iMetrikus:

This is from the 2008 Deloitte Survey of Health Care Consumers, page 14 of the report:

• 13 indicate prior use of one or more medical devices for monitoring a condition for themselves or a family member.
• 7% of consumers report expressing a preference to their physician about a specific branded device.
• 88% of consumers say they would be interested in using a self-monitoring device at home if they were to develop a health condition that required regular monitoring. 33 % said they were extremely interested.
• Reasons for consumers’ interest include the elimination of trips to the doctor’s office (75%), the convenience of reporting results to the doctor electronically (69%) and the ability of the device to help in adjusting their medications (67%)

Interesting to see that consumers recognize the costs that come with (potentially) unnecessary visits to the office to monitor chronic conditions. I am next going to look at consumer costs for managing blood pressure. If anyone has articles handy, please post them below….

A3 (Project Plan). Click here to learn more about what an A3 is

This post contains the A3 Document, or the Project Plan, for Connectivity for California Consumers. I have been posting some of the data that supports this plan on this blog (click here to see them all). In addition, I have been working with staff at California Healthcare Foundation and potential stakeholders to improve the plan.

For those of you unfamiliar with the A3 format, it is designed to (a) tell a story and (b) incrementally improved to the point that the actions are clear at the time a project is launched. It may be revised once a day or even more often. The process of discussing the project and making improvements is called “nemawashi.” I am using this blog for extended nemawashi, so please post your comments.

Since an A3 tells a story, starting on the left, going down, and then on the right, I will summarize the story here. Feel free to print out the A3 and follow along (A3 means “11 x 17″ paper. You may have to shrink to fit on letter size).

Issue & Focus

1. The California Healthcare Foundation is dedicated to the improvement of the lives of Californians managing chronic illnesses.
2. There are many community stakeholders involved in supporting this goal; their work could be improved by making connections to each other that are meaningful for patients.
3. This is part of a broader strategic plan to support the objective of involving patients and families in all aspects of their care. This is the identified gap to be closed through this work.
4. California Healthcare Foundation is seen as catalyst and partner for patient engagement in California

Current Condition

1. There are well known gaps the care of people with high blood pressure
2. The impact of these gaps is distributed across stakeholders differently compared to other chronic illnesses, which includes a strong productivity-loss component, due to the high prevalence of the condition in employed populations (see charts).
3. There are examples of employers and technology companies approaching these gaps in hypertension and other chronic illnesses that can be studied.

Problem Analysis

1. Lack of access to care accounts for only 10% of poor blood pressure control; there is a physician component in setting goals, and a patient component in operationalizing those goals, that may not be accomplished in physician visits alone.
2. Patients who are not seen at least every 12 months are at greater risk for non-adherence
3. The societal costs of inadequate management are spread diffusely; few organizations are able to to see the total harm from this perspective
4. There are few models outside of integrated care systems of using non-visit-based approaches to managing chronic illness.
5. We are just entering an era of interoperability, with many solutions not yet integrated into the value chain of patients and payers

Target Condition

This pilot seeks to create a functioning ecosystem that supports chronic disease management across the lifecycle, with the best candidate being hypertension

Action Plan

We began by interviewing example employers, health care providers, and technology providers to understand which approaches and components appeared most promising. At this time, it seems most reasonable to approach this first from the employer perspective.

Next step will be to convene a group of potential partners in June or July, 2008, at California Healthcare Foundation, to discuss how pieces would fit together.

A presentation would be made to the CHCF Board in the fall, with funding and activity to begin in 2009.

Cost / Cost-Benefit / Waste Recognition

There are recognized wastes, which include unnecessary visits for blood pressure monitoring, inadequate medication therapy, and inadequate use of the health system, for patients who have not been seen in the past 12 months.

There are costs including, technology costs (although the goal is not to build anything new), and realignment of incentives to support non-visit-based care.

Followup / Unresolved Issues

Points of concern and planned countermeasures

1. What is the metric for patient access? (Pacific Business Group on Health is working on an employee engagement survey; metrics for patient access to their health data may need to be developed)
2. How can this complement the launch of both a P4P measure for blood pressure management, and a HEDIS “Relative Resource Use for Uncomplicated Hypertension” measure for 2008?
3. Data for presenteeism and productivity loss does not seem intuitive (I have reviewed this in depth and we can bring in clinical champions to verify)
4. Partners and aligned interests (will do due diligence to support cooperative business models of partners)
5. How to engage patients in things like biometric monitoring and blood pressure control (will look at plan design options, but most importantly will go to the factory floor, and will bring an employee/patient advisor on to the team)

So that’s the script that goes with the story, more or less. Comment away, and keep in mind that each comment will change the A3 a little every time.

After visiting Sebastopol with Veenu, we were able to visit with other leaders in patient centered care, including James Kahn, MD, from the Positive Health Program at University of California, San Francisco.

I was first exposed to Jim’s work when I shadowed at Lifelong Medical Care in Berkeley, which uses the electronic health record, HERO (Health Care Evaluation Record Organizer (HERO)), developed by the team at UCSF. When I was at Lifelong Medical Care, I appreciated the fact that practitioners caring for HIV patients looked forward to using the electronic health record system to manage these patients’ care. This occurred early on in my shadowing work, and gave me the sense that more physicians in more practice settings are interested in HIT than has been commonly believed.

On this day, at a very hip (yet affordable and with a health care surcharge for employees, we do work in the non-profit world after all) San Francisco eatery, Jim showed us the myHERO portal, which facilitates the care of patients with HIV as part of the Positive Health Program’s work. Veenu and I have been interested in patient connectivity outside of commercially insured groups, and this is the welcome reality that myHERO brings to health care.

Here are some images of our lunchtime tour (Note, as with any demo of systems like this, we only looked at mocked up patients, never at any actual patient information):

myHERO is connected to the electronic health record that the PHP team uses, and it is being set up to support secure portability of information to the places where patients need it. Jim has been leading this effort as both as a clinician and an Informaticist. myHERO brings the concept of a multilingual personal health record forward (it has a spanish version), and Information therapy, through linkages to MEDLINEplus.

It was/is overall terrific to see inroads being made into patient access to health information technology in diverse populations. Jim and UCSF will be able to add information to the best ways to engage patients with chronic illnesses from a variety of backgrounds, an area of health informatics where there is very little data.

As fellow patient-centered care providers, we also had an engaged conversation about how much to share and when, and about the challenge of whether to build something yourself or buy something when it comes to technology. These are great topics to talk about (”the how”), but the core is really “the what,” which is less about the technology and more about the intent to involve patients and their families, which is what we saw, a perfect companion experience to our time in Sebastopol. MyHERO is yet another burst of innovation from the Golden State.

Bruce Merlin Fried, Gauging the Progress of the National Health Information Technology Initiative: Perspectives from the Field - CHCF.org (California Healthcare Foundation).

The highly respected California Healthcare Foundation has been putting out an impressive array of topical work in the health information technology lately, and I thought this one deserved its own post.

The piece, Gauging the Progress of the National Health Information Technology Initiative: Perspectives from the Field, is a summary of activities to date in the United States’ Health Information Technology Adoption Initiative along with interviews of nearly two dozen leaders and experts in the HIT community about progress to date. If, like me, you eagerly read the initial “Decade of Health Information Technology” document when it came out in 2004 and were filled with hope, this piece is definitely for you. Even if you didn’t read the initial document, this piece will get you up to speed, because it describes the four cornerstones of the HIT initiative and talks about what has happened since.

And how’s the news? Mixed. It appears that success has been achieved in creating awareness globally, and in the cornerstone of certifying electronic health records (I should mention here that I am on one of the Foundation Workgroups for the Certification Commission for Health Information Technology).

I am studying a lot of LEAN Hoshin Kanri principles right now, so visual rating systems are on my mind. If I were therefore going to create a visual for the cornerstones, based on what I read here, I would put a Red light (danger) next to Nationwide Health Information Network, Red light next to adopting interoperability standards, Green light next to certifying EHRs, and Yellow light next to Reconciling laws.

There isn’t a lot of clarity about what we mean by HIT, as the paper highlights. Does this mean that consumers/patients will use an EHR because they have access to a PHR? We can’t know because we aren’t there yet. That’s the bad news.

There’s some good news, such as this nice quote from Carolyn Clancy, MD, of AHRQ:

If there was a tipping point here, my guess is it was probably Kaiser [Permanente] turning to Epic [Systems Corporation]. I think what a lot of people are beginning to see is that these investments can actually change the nature of health care to a series of transactions that are far more proactive, that can happen right now even without payment reform.

On the not so good side, there is more debate about the role of interoperability as a priority, or even as a separate cornerstone. From what I read, I think this article gets tagged in my growing collection of what I call “HIT_before_HIE,” which are the voices of a growing number of experts who question the value of pursuing interoperability before operability. Feel free to peruse the collection in the link cloud I have set up on the topic:

http://del.icio.us/tedeytan/HIT_before_HIE

What has my own experience been during this time? Well, in the time period from 2004-2007, I was involved in implementing one of the world’s largest personal health records, and a successful statewide electronic health record, in an organization that shares a lot of the “ideal” characteristics of care model that Kaiser Permanente does. I have seen that it can be done. I was also involved in the setting up of a Hoshin Kanri system to guide strategy deployment, to make sure that we got the right things done in maintaining and further developing our HIT capabilities.

In my sabbatical experience, I have seen that the desire is as strong as it is within the walls of my organization, but it is not happening at the same pace. This is why I take works like this seriously - the results I see in my on the ground work corroborate what is said here.

In addition, I find some congruence between the opinions of the experts in the article and my experience at the recent Joint Commission Roundtable in Chicago, where I learned about the paths to success in HIT in peer countries. Each has a strong public commitment to HIT.

There is more to be done. One of the comments I made in Chicago was that 4-14 % adoption for EHRs in small practices is too low for 2008. It’s too low for 2005. I wonder about prioritizing EHR with PHR adoption and studying work to quantify the value of incentives that has already been done (see Roger Taylor et al., “Promoting Health Information Technology: Is There A Case For More-Aggressive Government Action?,” Health Aff 24, no. 5 (September 1, 2005): 1234-1245, http://content.healthaffairs.org/cgi/content/abstract/24/5/1234. ). I also wonder about applying LEAN methodology to the strategy and deployment of HIT policy by our government. I think a Hoshin Kanri approach would make a difference by establishing focus and a sustained deployment plan.

Thanks for reading my thoughts. I welcome your comments.