There’s an excellent viewpoint paper published in this month’s issue of the Journal of the American Medical Informatics Association:

Halamka JD, Mandl KD, Tang PC. Early Experiences with Personal Health Records. J Am Med Inform Assoc 2008;15:1-7.

It is a nice supplment to the paper previously published by colleagues at Group Health Cooperative about their 7 year experience implementing and operating a PHR:

Ralston JD, Carrell D, Reid R, Anderson M, Moran M, Hereford J. Patient Web Services Integrated with a Shared Medical Record: Patient Use and Satisfaction. J Am Med Inform Assoc 2007:M2302.

There’s a link to this paper as well as a presentation I made about the Group Health Cooperative story here.

The paper adds very helpfully to the body of knowledge about how to operate a PHR specifically. Unfortunately, there is no guidebook on how to make medical record information transparent. Some points of interest and comparisons to what I know about Group Health and Kaiser Permanente’s PHR systems:

• There’s a nice overview of lab, problem list, and clinical data sharing policies. There’s a spectrum here. Kaiser Permanente so far is the most advanced in my opinion, with real-time sharing of lab results in several of its regions, including Northern California, which results 21,000,000 labs per year. BIDMC is sharing imaging and pathology results after a delay, which is the most advanced I have seen. These pieces of data are the next frontier in many organizations, including Group Health. I liked that at BIDMC, they have set up sharing to be reconciled as most the most transparent setting when there is a conflict between members of a patient’s care team. I might suggest that we apply the same rule nationally - let’s have the medical profession adopt the most transparent policy in use at any given institution. We (at Group Health) have found this to be the most empowering of our members.
• On the point above, there’s really no place to go to compare sharing policies and devise a new standard for our profession. At the current time, each medical group is deciding based on its own judgement. Some involve patients and consumers in this decision. Some do not. There’s no “toolkit.” The last time standards for electronic messaging were published by AMIA was in 1998, if I am not mistaken.
• Adoption by patients seems to be less robust in Massachussetts relative to other places. The adoption curve for PatientSite looks relatively flat. Curves for Group Health and Kaiser Permanente are more like hockey sticks. This is something Josh and I are trying to understand as we work with folks in Boston (Harvard Vanguard Medical Associates and Partners Health Care have similarly appearing trends). The conclusion I come to is that we should not believe that low adoption equals low interest by patients.
• It was interesting for me to note that in Massachussetts, medication data may not be shared from health plan databases, but it may be shared from provider or retail pharmacy databases. Does this hinder support for PHRs from the health plan sector?
• Children’s Hospital in Boston operates a more patient-centric system out of the box. I could not discern what the uptake has been of this system from the article. Does this point to a tension between system flexibility and scale as we move ahead? Does the tethered nature of the largest PHR systems (Kaiser Permanente, Group Health Cooperative, BIDMC, Partners, Geisinger) probably make them easier to promote and manage as part of the patient-physician relationship?

This paper is very timely and another demonstration that patient centered health information technology has a growing leadership base within the medical profession. Perhaps a great next step might be for the medical profession to take these experiences and innovate in care standards about what we share with patients (as much as possible) and what we deliver with each clinical interaction (information relevant to the moment of care during and after the visit).

Today’s links are representative of the fact that we aren’t doing observations right now. Instead, we are preparing our first 90 day interim report for our partners. This means looking back on the last 90 days, and putting together our impressions at the interface between patient and health system, along with relevant background and policy information. We’ll post that here, of course.

PCHIT links for December 24th through December 26th:

• U.S. healthcare payers to limit IT investments in 2008 -
• ACGroup, Inc. Whitepapers - Nice overviews of the EHR market and physician practices
• PHRs: From Evolution To Revolution by Liz Boehm - Forrester Research - Interesting commentary on health plans, PHRs, and adoption. Are health plans ready?

December 24th through December 26th:

• iMedix - Find Health Information, Share Symptoms & Discuss Treatments - Israeli startup that connects patients to each other with the same condition(s). Imagine if their doctors could be part of the conversation.
• Metropolitan Police Department Crime Search, Washington DC - A handy tool for looking at crime statistics in your area. All the information is there.
• Customer Experience Index Snapshot: Health Plans by Bruce D. Temkin - Forrester Research - There’s an enormous opportunity for health plans to radically improve their customer experience ? and go after the majority of consumers that are interested in switching plans.
• gladwell dot com - personality plus - Malcolm Gladwell writes about corporate use of personality tests. I have not really been a fan of Myers-Briggs myself.
• Unicru Test Items - A potential employee posts the Unicru personality test used by many retailers.
• Rock Creek Park - Monuments, Statues and Memorials (U.S. National Park Service) - Descriptions of memorials in the Mount Pleasant / Columbia Heights area
• macosxhints.com - 10.5: Move apps between spaces with the app switcher - For Mac users out there, this is a tip that makes the new Spaces feature very usable. I’ve had it turned on for a few months now and getting the hang of it (I always try new things for a bit, but know when to stop trying them, this is why I am early major