Why Can’t someone Give Me the Perfect Managed Personal Health Record (mPHR)?

flying cadeuciiI’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 as a country we would like to think that we are each responsible for our own care, most of us as individuals would prefer for someone to be there, helping us through our time of need.  Years ago when I was advising one of the Presidential hopefuls regarding a healthcare platform,  I suggested that the campaign should be propose that individual was 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 (PHR) 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 the expected millions of enrollees.  As noted by David Shaywitz, healthcare is a negative good, something viewed more with resentment than in anyway positive.  And that extends to things that keep us healthy.  To interact with your health means you are imperfect, you are mortality.

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, 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 research) their problem.  This may seem far fetched, by I believe CC will be a new job in 3-5 years.  And when this army of providers 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

  • Upload data from disparate hospitals and clinics
  • It would store and view previous radiology exams
  • It would do med reconciliation and education
  • It would send reminders
  • It would manage exercise programs
  • It would allow differing levels of permissions and access…for the patient, the advocate and family
  • It would message those defined in the persons ecosystem if the PHR identifies a down trend.
  • It would report on utilization and changes in utilization
  • It would collect biometrics including wt, BP but also depression and pain indices with reporting and messaging
  • It would link/suggest support groups based on the problem list
  • It would leverage secure texting and email for messaging
  • It would 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 is a neuroradiologist and informatics physician, Barrow Institut

Categories: Uncategorized

Tagged as: , ,

14 replies »

  1. Dr. Alan Pitt, I can’t agree more. Working in an ER I noticed time and time again that patients were poor at communicating their health history, it was frustrating and led to unnecessary testing. When patients have an easy way to aggregate their health data, share their information with whomever they choose, and are allowed to grant others access to their profile we’ll see a shift in the efficacy of PHR’s. Ideally these systems will incorporate data from patient portals, EMR data, and all of the patient generated data sources.
    The future is coming!

  2. nice selection of professional healthcare blogs. but still i think there is one site i found a year later doing legendary work in healthcare IT field. they’re doing innovative work in the field of PHR (completely free – which i personally use to store my health records) along with amazing information on various health topics : http://mediklik.com/

  3. I loved reading this article and all the comments. We are presently in closed Beta with plans to launch the private Beta next month. Nearly everything being requested is either already built or already in our development timeline.

    With regards to a Care Co-ordinator or Care Concierge, the Better (https://www.getbetter.com/) is already doing a great job of filling that need. If you want to learn how well it works, just read Jason Calacanis’s blogpost, How I fell in love with—and invested $250k in—the BETTER App, here-http://calacanis.com/2014/12/

    While Mr. Bushkin’s passion for his product, MedKaz is admirable, we feel there are a few fundamental problems with it that are addressed by Personal Health Cloud. Since we are still in stealth, I won’t go into detail at this time.

  4. In pre-computer days, I typed ‘Emergency Medical Records’ for my husband and myself, including everything mentioned by Deborah Verran. I knew in general what questions would be asked by physicians and hospitals, and in approximately what order. I kept his data current until his death, and will continue to keep mine current. Copies were in his wallet, my purse, on the fridge, with our children and on my computer and backup drive. So far, all emergency personnel, doctors and hospitals I’ve presented it to really like it because the printed information makes their data entry much easier. They, and I, don’t need to rely on my elderly memory, which is very good but not perfect. Ambulances, at least in my area, can fax the data to the hospital. Also, every physician’s office has ‘update’ forms to be filled out periodically. Having all the info at hand makes checking boxes and entering other info much easier and faster.

  5. As a healthcare provider who regularly faces the problems with lack of interoperability alon with communication issues leading to barriers with accessing and/or relaying info on patients I believe a simpler solution is required.

    What is needed is for patients to be able to access an iterative summary of their own medical history and pass this on to caregivers. That is for there to be a problem list with dates of initial medical diagnoses, dates and types of procedures and finally a list of current medications along with drug allergies. It would be useful if an immunisation record was also available.

    This is the critical info that every patient has to recount on every occasion when they are faced with a new encounter with the health care system. Some do it well and many struggle to remember or forget bits of info which can be critical,

  6. I would also suggest that Dr. Pitt forgot to add:
    6. Who is going to pay for creation, implementation, maintenance, and upgrades for such an interconnected system or for the proposed care coordinator (CC)? There is not enough savings in “wellness” by implementing such a program to pay for the medical informatics or the support personnel for care coordination.

    I would also suggest that a care coordinator position could be replaced by a Care Concierge (through an Employer’s EAP) to help employees get the best value for their money when considering elective procedures. For the public, healthcare sherpas could be created to help in a similar manner – at least until we get greater price transparency and relational coordination.

  7. You have to remember a few things about medical records:
    1. There are many errors. Lab work often has a Coefficient of Variation of more than 10%. Radiologists might miss ground glass infiltrates. Histories are often biased. Blah, blah, ad infinitum. You know this.
    2. It is good, therefore, for contemporary providers to rethink medical records, to be a little quizzical and confused, to review and repeat and re-diagnose, to ignore a lot, to take trends and mental averages. It is not the worst thing to have incomplete medical records. A series of Hgb’s of 8.7, 9.4, 9.2, 10.3, 8.9 is read by a physician’s brain as a series with no 10.3. We are used to seeing this kind of data coming from our labs and it doesn’t phase us.
    3. The recent records are more important than the old records, in general. The biology is changing. HGSIL can disappear. Rheumatoid disease can go away. The lab technology and radiology technology is changing. The genome is coming into fore. It is as if you were in charge of foreign policy. The recent history of the world is more important than the ancient history in formulating what next year’s policy should be.
    4.Because the nature of the data going into the medical record is rough, a patient who has a literal mind will talk about the 10.3 Hgb. You have to understand that this will happen. Do you want this to happen?
    5. In your fine list, you missed data security. You don’t want people getting all this stuff in the hands of advertisers and fraudsters, no matter how old they are.

  8. I agree completely with your desire for patients to control their complete personal health record from all their providers but not with your concept of a professional care coordinator performing the functions you describe.

    Whether you are right remains to be seen but our MedKaz® personal health record provides the the starting point for the system you and I both envision. It aggregates a patient’s complete record, both paper and electronic, from all his providers, and our patented application to manage them, on a MedKaz Green Drive®. He carries it on a keychain, in a wallet or wears it and gives it to any provider at the point of care anytime, anywhere — at home or away, in or out of his network. With two or three clicks she can sort, search for and access specific records even without Internet or server access and thereby provide better, coordinated, lower-cost care. It is updated for the patient so it is always current. (Visit Medkaz.com for more about it.)

    When the residents of the senior communities you are affiliated with have a MedKaz, they’ll enjoy peace of mind that any doctor they see will be able to coordinate their care with their other doctors and enable them to transition seamlessly between PCP and specialist, personal doctor and hospitalist, hospital and senior community, etc. And everyone else connected with the healthcare equation will benefit, too. Doctors and hospitals will enjoy material new revenue and operating income. Employers, insurers and government will enjoy savings from fewer, lower-cost claims.

    I should add that MedKaz succeeds while Microsoft Health Vault is limping along and Google Health failed, because it is simple, easy to use, encrypted, HIPAA compliant and doesn’t turn either provider or patient into a data entry clerk. It is updated for the patient with complete medical records not with summary CDAs, insurance records, or other documents the patient must upload himself.

  9. Because right now perfection is acting as the enemy of good. The disparate data sources for middle-aged and elderly population will make it too difficult to construct a record that physicians will rely on. My suggestion is to build the record around the use the system less and will be more willing to embrace it. Complement the care of middle aged and elderly data from these sources but do not make all your decisions around it. Jenna 15 years you will have a great personal health record system.

  10. Flawed logic. Your concept assumes peoplw have nothing else to do than perseverate over the nuanced interval changes in their measurements. Anal compulsive, and a woderful product for the worried well. You should be asking for better preschool education and medication and food for the indigent and downtrodden. So solly to rain on your parade.