Is a Universal Health Record (UHR) Possible?

With the rise of Electronic Health Record (EHR) vendors comes the increased availability of Personal Health Records (PHRs) and patient portals. If Meaningful Use continues erring on the patient side (as it has in Stage II), by the end of it all (hopefully 2021), every person in the United States should at least have the option to register for a patient portal with their provider. The hope for patient portals is strong and the dream is big. ePatients from around the nation tout PHRs and patient portals that are fully integrated with services like WebMD, Medline+ and the like. In this instance, information between systems needs to be free-flowing and multi-directional. Yet with so many health IT vendors out there (EHR vendors, PHR vendors, HIE vendors, health insurance exchanges, community information exchanges… and the list goes on), can a universal health record ever be attained?

Noted in a 1Health Affairs article earlier this year, the national eHealth move is for the patient to own the information. The patient will keep the information with them as they transition from provider to provider. This makes absolute sense when you think about it. You, as the consumer of health care, should own what you purchase – your health data. Yet our health data is still fragmented, currently only accessible at a provider level. Even if I were to gain access to all of my health data, it would be hosted on 10 different servers with 10 different login locations and credentials.

That being said, will we ever have a hub that brings together all of our health information into a centralized location? Recent discussions I had at a conference mentioned weak responses painting a very fuzzy picture. I’ve long dreamed of a place where all of my health information automagically appears, with no result thus far. Even a former prof, involved with the Beacon community, mentioned no good news on PHRs or patient portals.

To get to a point where patients will access their health information in a simple, secure, uniform fashion, developers, policy makers, and patients, will need to make tough decisions moving forward. Among them are things like:

  1. Where is the data stored? We know it’s the cloud…but whose cloud? Is it on a patient side since the patient owns the data and EHRs are just rendering machines? Is it on the EHR side because thats where the data gets generated and then PHRs become rendering machines?
  2. If we are to store the bulk of data in a single place, are we sure we want to open ourselves up for the possibility of hacking, or leaking of personally identifiable information? Sure you de-identify the data….but you also leave bread crumbs to re-identify it when need be…not to hard to crack that at the end of the day.
  3. Is the industry ready to put more emphasis on the patient as a decision maker? Until recently, the patient has been a mostly harmless player in the health care process, with little power of decision. Are insurance companies and providers ready to let go of some of their power and share with the patient? (all of you part of the elite in the ePatient community…you are the exception).
  4. As much as medicine is an art, it is a business. Are providers ready to become not just healers, but health educators? If health care is going where all patients and public health professionals want it to go – prevention rather than treatment – can PCPs see themselves more as health coaches and less as Dr. fixit in order to stay in business? 
  5. Is the average person ready to take their health more seriously and be actively involved in attaining and maintaining good health? Will the average person take advantage of a UHR to make it worth everyone’s while?
The questions go on and on! The concept of a UHR is not as simple as developing a database and allowing people to fill it. For a UHR to become valuable in the health care process, there needs to be demand for it and we’ve already seen how a good product can go down sans usage (thats you, google health)  We see demand coming from the ePatient community and the millennials, however, is it enough of a demand for a strong enough push?

 

1Claudia Williams, Farzad Mostashari, Kory Mertz, Emily Hogin and Parmeet Atwal. From The Office Of The National Coordinator: The Strategy For Advancing The Exchange Of Health Information Health Affairs, 31, no.3 (2012):527-536

 

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