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.

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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.

Maurena Moran, Group Health Cooperative’s Executive Director of Web Services and Enterprise Information Management, sent me a note that our work together is now published in the AHRQ Innovations Exchange:

AHRQ - Innovations Exchange: Online Tools and Services Activate Plan Enrollees and Engage Them in Their Care, Enhance Efficiency, and Improve Satisfaction and Retention

Here’s the description of the Exchange from AHRQ:

The Agency for Healthcare Research and Quality’s Health Care Innovations Exchange is a Web-based resource designed to support health care professionals in sharing and adopting innovations that improve health care quality.

The message forwarded from AHRQ encourages linking to the Exchange and having other people comment there. I have to say that this is a great resource for the times when people have asked, “tell us what it is you did again on your project?”

Prior to the existence of the Exchange, I had a PDF document on my hard drive of an application we wrote for a national HIT award that described our work in launching a personal health record and electronic health record simultaneously across the State of Washington. We didn’t win the award that we applied for, but the effort put into the application paid off well considering the number of times I sent the document out to other people/organizations. Now there’s a real place to send people to learn more.

I think the Exchange fills a niche for large organizations who want to provide open access to the work they are doing but don’t have the right place to organize this information on service-oriented Web portals. Thanks, AHRQ, and thanks to Maureena, her team, and everyone at Group Health for changing the way we think about interacting with patients where they live, work and play. It’s a great story…

Everything in moderation, including moderation…