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Don’t Give Up on The Personal Health Record

by Mark Scrimshire

This is an extract and re-post from Mark Scrimshire’s blog: ekive.blogspot.com

In the prelude to the recent Health2.0 conference held in Boston, e-Patient Dave’s experience in importing his medical claims records to Google Health got picked up by the Boston Globe. This has sparked a fascinating debate. You need to read Dave’s post.

At the recent Web 2.0 Expo I had time to sit with Jay Parkinson MD and he also ended up commenting on e-Patient Dave’s experience. Jay penned a powerful analysis in the Business Insider of what Dave had written about. John Grohol at e-patients.net described Jay’s assessment as “Hitting one out of the park“. However, I don’t share Jay’s conclusion.

Google Health and Microsoft HealthVault are still in the early stages of their evolution. I don’t think it is time to give up on the idea. Indeed I think it just serves to confirm that we have to put the patient at the centre of the system and not bet on the Health Care Industry successfully building Electronic Medical Records and Health Information Exchanges in order to efficiently move garbage data about as around the industry outside of our purview.

If we can’t trust claims information let’s at least focus in on the information we can believe.

How about the medications we are taking, which could be pulled from our prescription records. This is an area where accurate data might actually save our life by avoiding damaging drug interactions.

The moves that the Continua Alliance is taking and Microsoft’s device standards for HealthVault are a push in the right direction. I believe consumer accessible telemedicine devices are the next consumer wave. The data these devices collect belongs in our Personal Health Records where we can choose who we want to share that information with.

So Google, Microsoft and Dossia - Don’t get dispirited. There will be bumps in the road. Let’s tackle the simple stuff first and get value from collecting and sharing basic vital sign, prescription information and family history data that could prove of value to the medical community.

Keeping an open data approach to PHR’s will provide the basic for a flourishing ecosystem that will be able to increasingly make sense of the complex data that will eventually feed from EMRs inside the health care industry.

If anything e-Patient Dave and Jay Parkinson’s commentary just serves to underline the enormous benefits that are there to be grasped if we put the PHR and the consumer - us - at the center of the Health Care puzzle. The consumer/patient is the one common denominator. Patient Self-Management is not knew and it yields real, positive results. It is just that up to now we, the patients, have been working in the dark with snippets of information of uncertain value.

Rising medical costs are going to drive active consumer engagement and this is going to lead to more patient self-management not less. To my mind this means that the EMRs and Health Information Exchanges that are being planned in order to grab a piece of stimulus cash will be handling an ever smaller part of the patient management puzzle. Outside of chronic disease management, an increasing proportion of health management information is going to be managed outside of these EMR platforms. If the industry doesn’t recognize the potential value of the un-tethered PHR then they will be faced with the prospect of operating with less and less of a full picture about the patient. That potentially leads us down a path of practicing more, not less, defensive medicine which will continue to drive medical spending higher.

The patient is at the center of this puzzle.

We are the common denominator.

To the Health Care Industry - Get over it! Give us, the consumers/patients, the tools to help us help ourselves. After all we are the ones that spend 100% of the time living with our diseases and ailments.

If you are interested in this and similar discussions you can join the conversation at HealthCamp. The next HealthCamp event is HealthCampMd which takes place in Owings Mills, MD on Friday June 19th. HealthCamp is about bringing all parties together, including patients/consumers in to a conversation HealthCare that asks how we can rebuild healthcare on a participatory model using Social Networking, Open Standards, Open Source and the best that the web and mobile Internet has to offer. Literally hundreds of people have joined in this conversation in the past year.


  Deresa Claybrook wrote @ June 2nd, 2009 at 11:25 am

Good article. The consumer does need to be the center of the health care information system. It really begins with the patient. What is the first thing we do when we go to the docto? We tell them everything about ourselves. So the patient needs to be educated on how important it is to be accurate and they need a device to allow them to be accurate. More education needs to be done to link phsyicians and patients in this endeavor.

  Zach Evans wrote @ June 2nd, 2009 at 5:47 pm

I completely agree that healthcare vendors / institutions need to get over themselves and allow patients to control their own healthcare information. For too long providers have been reluctant to share raw data with patients, often citing the need for providers to be able to talk candidly about patients without worrying about them reading their notes over their shoulders. At the same time, however, providers wanted patients to take more responsibility for their own care–expecting accountability without information is folly.

HIPAA tries to address some of these issues but the general population does not understand the accessibility portion of the law and providers have little to no incentive to educate them. Empowering patients is a central promise of both Google Health, Microsoft Health Vault, and others, and is a worthwhile goal. Patients, however, will need to be better educated before they will be able to truly unlock their potential

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