Wanted: A managed personal health record for assisted living

 [The following clinician guest post is by Dr. Alan Pitt, who is helping to plan a senior living community under development. We met recently at Health 2.0, and he was nice enough to write a post about the tech tool he is currently looking for: a managed personal health record. (This post is cross-posted to his blog too.) Thanks Alan!]

“I’m not as scared of dying as I am of growing old.” – Ben Harper, Glory and Consequence

Whether we admit it or not, most of us are afraid of growing old. There is a sense of loss, of youth and vigor, coupled with the burden of managing your health in relative isolation. Although Americans would like to think that we are each responsible for our own care, most of us as individuals would far prefer for someone to be there, helping us through our time of need. Years ago I was advising one of the Presidential hopefuls regarding a healthcare platform. I suggested that the position should be that individuals be responsible for their own health, but as a country we would partner to provide the tools for the individual to succeed. Now, almost a decade later, we are not much closer to this goal.

Personal Health Records (PHRs) were thought to be the answer. These records differ from more traditional EMR in that they are owned by the patient and aggregate information from multiple sources to give a complete picture of the patient. For example, they might include clinic visits from multiple providers, hospitalizations and updates on an exercise program. Literally billions were spent on PHRs by the likes of Microsoft (HealthVault) and Google. Both efforts were failures with thousands (in the single digits) rather than millions of enrollees. As noted by David Shaywitz, healthcare is a negative good, something viewed more with resentment than in any way positive. And that extends to things that keep us healthy. To interact with your health means you are imperfect, you are mortal.

Rather than a PHR, I would like to propose a different tool, a managed PHR (mPHR). This would be owned by the patient, but managed by a surrogate, such as a family caregiver or even a care coordinator (CC). This person would be responsible to keep the person on track, taking their medications, keeping their appointments, explaining their illness (or at least researching their problem). This may seem far fetched, but I believe CC will be a new job in 3-5 years. And when this army spreads across the land, they’ll look for a tool to do their work. And it won’t be an EMR. It will be a mPHR.

What would the perfect mPHR do? 

Here is a list I’ve compiled:

• Collect and organize data from disparate hospitals and clinics 
• Store and view previous radiology exams 
• Facilitate med reconciliation and education
• Send reminders
• Manage exercise programs
• Allow differing levels of permissions and access…for the patient, the advocate and family
• Message those defined in the persons ecosystem if the PHR identifies a down trend.
• Report on utilization and changes in utilization
• Collect biometrics such as weight and blood pressure, and also track problems such as depression and pain indices with reporting and messaging
• Link/suggest support groups based on the problem list 
• Leverage secure texting and email for messaging
• Be platform agnostic & cloud based

The critical thing here is actually not the functional requirements…these have already been fairly well defined…it is the ability to easily work with surrogates and family while maintaining some level of choice and control by the patient.

This is not an idle ask. I am now working with a developer building senior communities with integrated care and care coordination. I can buy an EMR, but not an effective PHR for these communities. With any luck at all, we will be managing thousands of lives in these communities in the next few years.

To all you bright entrepreneurs out there, help me out. Build the perfect mPHR. If I am right, and there is a lot of evidence I am, you’ll transform how we care for one another, and make a lot of money doing it. I won’t be your only customer.

Alan Pitt, MD, is a Professor of Neuroradiology at the Barrow Neurological Institute in Phoenix, AZ, and has been a speaker at Health 2.0. His skills and talents include cloud-based informatics, innovations in telehealth, and finding financially sustainable ways to improve healthcare. You can reach him at alanpitt [AT] me [DOT] com.