Paper: Early Experiences with Personal Health Records. J Am Med Inform Assoc 2008;15:1-7.

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).


[…] Consumer access to personal health data somewhat mirrors provider access in that theoretical access exists for many consumers, but few are making use of that functionality. Many of Boston’s large providers have also launched personal health record (PHR) corollaries to their EHRs. However, among the practice settings studied, adoption among consumers remains under 10% of the eligible population. The first and most active PHR, CareGroup’s PatientSite, currently has approximately 35,000 active consumer users, according to a recent JAMIA study. Penetration is difficult to judge because the study does not indicate the potential eligible patient population. (see: Early Experiences with Personal Health Records) […]

Ted Eytan, MD