One Patient's View of the Optimal Personal Health Record

In teaching current and future informatics professionals, I often speak about the Internet-savvy baby boomers who will interact more with the healthcare system as they get older, which will likely usher in the era of patient-centered informatics more than anything heretofore. I recently had some activities in this role, which gave me some firsthand thoughts about the personal health record (PHR) and interacting with the healthcare system through the PHR and other Web-based means.

There are many views about the role of the PHR and how it should be optimally used. Should it, for example, be primarily connected (sometimes called tethered) to the electronic health record (EHR) of the organization where one receives most or all of their care. While few people desire a truly standalone PHR (i.e., not connected to any data), some advocate it is more important that we move toward an integrated PHR that can interact with data from many sources, from one's own healthcare system to health-related data they capture, such as diet and exercise logs [1, 2].

I recently had the opportunity to interact with my healthcare provider system (OHSU) and its PHR offering (MyChart, tethered to its Epic EHR system). I am fortunate to be in good enough health to not be a major consumer of OHSU healthcare services, but in these interactions, I did come to realize that I want my healthcare system to provide the same kinds of online services that I routinely use for banking, travel, and consumer purchases (e.g., books, electronics, music, etc.). In this regard, OHSU, like many healthcare organizations, falls short.

My experience showed me that what I really want is not so much a PHR (thought it is part of the mix), but rather the ability to manage my data and information with a PHR as well as the ability to carry out all of my interactions with the healthcare system. This includes everything from appointment scheduling and prescription refills to tracking my personal health.

What led to this interaction was what turned out to be a spurious slightly elevated fasting blood sugar. Although I am not overweight, I do have a family history of Type II diabetes, so this is something important to monitor. I also have a number of other cardiac risk factors, including some that are not modifiable (family history), which I try to mitigate with healthy living, namely diet and exercise.

(My cardiac family history is like a roulette table. I have a maternal grandmother and her father who lived to over 100. My maternal grandfather, on the other hand, died of coronary heart disease in his early 50s. Likewise, my maternal grandparents had diabetes and heart disease but lived into their 80s. My father had coronary bypass surgery just before age 50 but is alive and has been symptom-free over 30 years later. Both my maternal grandfather and my father would likely have their coronary heart diseases treated differently in the modern era, with our present array of medications and procedures such as angioplasty. I note that I am also different from them in that they were both smokers. The question is whose genes for coronary disease I have inherited, which is perhaps something our bioinformatics colleagues will be able to answer in the future.)

I also have mild hypertension and a mixed lipid panel, with normal total cholesterol but a sometimes low HDL. In the process of checking a lipid panel, my physician also ordered a metabolic panel, which included a blood glucose. I have always had a fasting glucose at the high end of normal at around 100.

In MyChart, results are released to patients after being reviewed by the provider. This is probably a good idea, although for more routine things, it might not be, since it delays the patient (including knowledgeable ones like me) from getting their results. My initial glucose (along with my lipid profile, which was originally my main concern in getting the blood drawn) was released within hours of the blood being drawn. I was not so lucky for the follow-up tests.

I was impressed to get an email notification within a few hours after the blood was drawn for the first set of tests directing me to MyChart, where my results and a brief message from my physician were waiting. The results showed a fasting blood sugar of 107, which is classified nowadays as "prediabetes." My physician suggested the next step should be to wait and check it again in three months. However, given my family history and other cardiac risk factors, I wanted to know more. In particular, I wanted to know what a two-hour postprandial glucose and a hemoglobin A1C level would show.

My personal physician is also a professional colleague at OHSU and someone I have known since I arrived there 21 years ago. I chose to contact him through the MyChart messaging functionality, although did not get a reply. So I sent him a regular email, to which he responded promptly and ordered the additional tests. I do know that some physicians have trouble keeping up with the stream of email that comes in via MyChart. I do not blame them as much as I blame our healthcare system that only pays for face-to-face medical encounters  and not overall care of the patient, although perhaps that will change with accountable care organizations (ACOs) [3].

I had the second set of tests done on a Friday morning and was hoping for the same quick turnaround as my other tests. This time, that did not happen, and I did not hear back from my physician until late the following Monday. The time lag was certainly not critical for my health, but I did have a desire to learn the results as quickly as possible. I did receive excellent news. Not only was the fasting glucose 97 this time, but my postprandial glucose was 80 and my hemoglobin A1C was 5.1. Not even a hint of diabetes!

Another encounter with the OHSU health system having nothing to do with MyChart but related to electronic interaction with the health system happened about this same time. As noted above, I also have mild hypertension, which is easily controlled with 10 mg of amlodipine daily (and no doubt my healthy diet and dedicated exercise regimen). I get refills for my amlodipine using the OHSU Mail Order Pharmacy. I can request a refill by sending an email to an address on their web site.  There are several problems with this approach. One is that getting my refill in a timely manner is dependent not only on my remembering to send an email a week or so before I run out, but also the timely processing of my request by the pharmacy, which does not always seem to happen. A modern PHR connected to my health system would send a reminder at the appropriate time that let me order the renewal with a click or two.

Another PHR-related activity with my blood pressure comes from the recent home blood pressure monitoring machine I purchased. I am impressed that it stores my results and, when I connect it to a USB port of my computer, uploads the data to my account in Microsoft HealthVault. Of course, it would be more ideal if this data were integrated with my MyChart account, but that does not yet happen. Speaking of HealthVault, I have to say that although I am not always a big fan of Microsoft software or their business practices, they did get it right with HealthVault. It makes sense to have built a PHR platform rather just an application. I could see in the long run how secure cloud-based storage of all our data, even that in the EHR, would be optimal. (Of course, security and availability would need to be rock-solid.)

As mentioned above, I do try to mitigate my cardiac risk factors with diet and exercise. My diet mostly follows the advice of Michael Pollan, "Eat [real] food, mostly plants, not too much" [3]. My exercise consists of running three days a week and cross-training with weights two days a week. I actually pursue this lifestyle less for future benefits and more for the present, as it gives me more energy and makes me feel better here and now. Any later-life benefits will be a plus. I do track my exercise and weight in a spreadsheet but have never felt compelled to take the time to collect any more detail or enter it online.

All of these experiences made it clear to me that what I want most in my online patient experience is not just a PHR, but rather the ability to manage my data integrated with my interactions with all of my healthcare providers. In addition, I want to be able to handle routine transactions in a modern eCommerce-like manner, such as making appointments and ordering prescription refills online. Some may argue that there is not a business case for healthcare organizations to act this way, since our current healthcare system pays clinicians for doing things and not for providing comprehensive, integrated care. I hope, however, that this is not the future, and that healthcare organizations like OHSU will need to serve its customers online because its Internet-savvy baby boomer customers will come to expect it and might seek care elsewhere if they do not get it.

References

1. Detmer, D., Bloomrosen, M., et al. (2008). Integrated personal health records: transformative tools for consumer-centric care. BMC Medical Informatics & Decision Making, 8: 45.
2. Tang, P. and Lee, T. (2009). Your doctor's office or the Internet? Two paths to personal health records. New England Journal of Medicine, 360: 1276-1278.
3. Fisher, E., McClellan, M., et al. (2009). Fostering accountable health care: moving forward in Medicare. Health Affairs, 28: w219-w231.
4. Pollan, M. (2009). In Defense of Food: An Eater's Manifesto. New York, NY. Penguin.