Facebook for Health: Could Social Media Lead to Functional Personal Health Records?

4535301772_3b7d1b1678This month’s issue of Health Affairs discusses a representative survey of physicians reporting that 64% had never used personal health records, but 42% were willing to try them. Male docs were more interested than females (46% vs. 34%), and rural practitioners more than urban ones.

Physician concerns about the systems included the usual suspects: Patient privacy, accuracy of data, liability associated with tracking patient-entered data, and whether docs would be paid for the time they spend reviewing records.

In the generalized craze to adopt some form of electronic health records that has accompanied health reform efforts, personal health records are one option. They generally describe an electronic health record, or selected highlights, that are accessed by patients, rather than being clinic-based. Its based on the radical notion that perhaps information should follow the patient, and be accessible by the patient, rather than exclusively in the domain of the provider or payer.

Personal health records also offer the ability for a patient to interact with providers via their health information, and this could have some interesting benefits. For example, imagine if you kept a health diary reporting on your asthma symptoms. Your doc could login and have a look to see if there were any notable trends. Perhaps you could record “peak-flow meter” readings, so in addition to qualitative reports, your doc could have patient-reported quantitative data to ponder as well.

This is an area where developers of health informatics could learn a lot from social media. Perhaps its time to think of personal health records more as social media for health. Think of a facebook for health: The patient can control who has access to their record. This might include a general category of “Any Provider” so that an emergency room could check on what medications you are taking and in what dose. But you might also want your brother or mother to have access, or a trusted pharmacist.

Perhaps most importantly, the design of such a system should be one that encourages patients to interact with their health information. Rather than seeing the medical record as something that is scary and requires an MD to understand, why not promote the idea that health has many influencing factors, many unknowns, and that the social and qualitative experience of people plays a huge role in how “well” they are?

Many older doctors bemoan the loss of hands-on diagnostic skills that are increasingly being replaced in their younger trainees by diagnostic tests. A social media approach offers a neat opportunity for doctors to hone their ability to begin narrowing a diagnosis based on what patients are saying about their behavior or concerns. Mentions of work stress and increased drinking might be a tip-off about depression. Poor sleep and fatigue might lead one towards prostate enlargement. A respected primary care doc I know who has been practicing for some 50 years is generally able to find a diagnosis by asking an open ended question like “What’s on your mind today?” With two or three follow ups, he usually knows what’s up. Could this type of approach be at least partially satisfied in an online setting?

Realistically, a personal health record doesn’t need to be comprehensive. Your primary care provider (PCP) should have access to your entire medical history, but in most cases there are probably about five or six or ten pieces of information that folks need to know about you in 80% of the cases. This includes emergency situations when a quick glance at a medication, allergy, and chronic condition list could save your life. If you are awaiting elective surgery, there’s no rush, so the surgeon has time to contact your PCP.

Similarly, you don’t have to know my personal history to interact with me on Facebook. Skim a few postings and you know what’s on my mind. Skim a few more and you have a good sense of what I spend my time doing, what’s important to me, even have a glimpse into what type of person I am.

Further, in ordered to be truly social, social media has embraced the idea of going where people go. Hence the multi-platform, multi-device compatibility of every successful social media. The same should apply to health information. My every move, and certainly my behavior and experiences at work or home has the potential to impact my health. But if the doctor is the only one who can update my record, and only during a 15 minute period every six-to-12 months when I'm shivering in a plastic chair with no clothes on, how confident can we be that those clinical information shards accurately reflect my wellbeing for the 99.9% of the time when I'm NOT in a clinical setting?

Is health really so mysterious that the social cues that rule every other part of our lives have no role to play in it? Social media is not a perfect way to share such social information, but it has proven to be well accepted by the 500 million users of Facebook and the 100 million Twitter users out there.

Photo credit: The author

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