Grant RW, Wald JS, Schnipper JL, Gandhi TK, Poon EG, Orav EJ, et al. Practice-Linked Online Personal Health Records for Type 2 Diabetes Mellitus: A Randomized Controlled Trial [Internet]. Arch Intern Med. 2008 Sep 8;168(16):1776-1782.[cited 2008 Oct 27 ]

A news article that quoted my response to this article was titled “Mixed Results for Personal Health Record System” which is true for the PHR being discussed here, but just for this one. For right now. The team putting together this PHR is a great team that will get great results with greater patient adoption.

Why do I say that? Well, despite the statement early in the article that “To date, there have been no large-scale studies of interventions that integrate PHRs directly with the electronic medical records (EMRs) used by patients’ own primary care physicians,” there actually have been.

There was a really good one in fact, performed at Group Health Cooperative in Seattle, WA (my review of that one is here), with great results.

The other issue that worked against the study team is patient adoption of their PHR system. This is not an artifact of PHRs in general, because other organizations, notably Kaiser Permanente and Group Health Cooperative have been seeing “hockey stick” slopes of adoption for their PHRs (see a picture of this here). Because there weren’t enough patients signed up for the Partners PHR (only 244 patients in the study, out of 6553 possible), they could not detect meaningful differences, so we don’t know if there were any real changes following the intervention or whether there is just random variation. I was informed last week, that Group Health Cooperative just passed the 50 % mark for adoption of its personal health record by the adults served in its Western Washington service area. In Eastern Washington, they are not far behind, with 42 % adoption. That’s transformational in terms of care processes.

So the next question is “why is Partners’ PHR adoption low?” It’s a great system supported by a great team, and the patients that enjoy using Group Health and Kaiser Permanente’s PHRs are really not that different in terms of the conditions they manage. The key may be in looking at the environment that most of health care still operates in. This photograph that I took recently illustrates that.

Don’t count the personal health record out just yet. There are a lot of really dedicated physicians and other experts creating great systems who will do great things when our health care system supports the therapeutic potential of their work as much as it does that of the imaging suite. Fortunately in 2008, we now have evidence that we can get great results by involving patients in the use of health information technology to improve their health.

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).

Dr. Jonathan Wald and myself spent another morning shadowing at Brigham and Women’s Hospital, which is a teaching affiliate of Harvard Medical School. It was a personal honor for me to be paired with David Bates, MD, MSc, whose work I have admired, respected, and used to inform how I serve patients for a long time, in the field of Informatics, Quality and Patient Safety. On this day, David was seeing patients from his own panel, in the capacity of general internist.

Before we started the day, though, Jonathan took me through the halls of the hospital, where there was an exquisite display of portraits of pioneers in the medical field, including Dr. Helen Brook Taussig, the founder of pediatric cardiology, and Dr. Paul Dudley White, who co-described Wolff-Parkinson-White syndrome, a staple of every medical student’s education. I think Jonathan and I are of the same mind in thinking that it’s important to reflect on where we came from as we do this work. Before Dr’s Taussig and White, we didn’t know how to manage congenital heart abnormalities or how electricity traveled through the heart, and now we do, because they said, “We don’t know how to do this, yet.” We’ll say the same thing in the application of technology to make care more patient-centered.

After spending time at BWH, I went to East Boston, to visit Frances Kuebler, MD, who is President of the Medical Staff and Physician Champion for East Boston Neighborhood Health Center’s EpicCare installation. EBNHC is an important part of the East Boston community, and serves a broad diversity of people who rely on the health center almost exclusively. This neighborhood health center is also state of the art technologically, one of the reasons I wanted to visit. I shadowed Stephen Simon, MD, in his practice.

Part I: The Pictures, Part II: The Practices (next post)

In the last post, I described my day at two different care organizations; Partners, and East Boston Neighborhood Health Center.

Continuing, a summary of….

The Practices:

Brigham and Women’s Hospital, Dr. David Bates: I shadowed David for several patients who are on his panel and well known to him. David uses the Longitudinal Medical Record produced by Partners Health Care, integrated with Patient Gateway. Jonathan Wald, MD, the Physician Lead, was next door working with a colleague to talk about Patient Gateway in practice. I think there were a ha’s for all of us about how to use a resource like this, including how to bridge the world of regular electronic mail and the PHR. David visibly practiced Information Therapy in front of me, when he printed out a document to describe a condition for a patient he was treating. The LMR as I understand it, does not automatically produce an after visit summary. I didn’t see David use Patient Gateway features during our visit, but we did have some time to talk about PHRs and the interest in supporting good research for the production of good outcomes knowledge about how to use them in practice. Jonathan is working on the issue of patient adoption, which he may comment about separately

East Boston Neighborhood Medical Center, Dr. Stephen Simon: EBNHC uses EpicCare, and has used it since 1998. Physicians have been documenting and ordering using the system for about 4 years. Their urgent care is also on the system. In shadowing, I was able to observe the first visit in this experience in Spanish, which was important for me to see. In the exam rooms at EBNHC, screens are pointed toward the exam table, where physicians can review data with their patients together, and I saw this happen in the visit(s). Stephen was very facile with EpicCare and has taken the time to customize it for best use. EBNHC does not yet have a PHR active for its patients.

One thing that was really important for me to see was a difference in focus. During my time at EBNHC, the staff was applied to recent health care reform policies that have gone into effect in Massachusetts, which affect everything from co-pays to drug formularies. It was impressive to note how much this was on the minds of the staff here, to support a transition that is successful for their patients. This issue did not come up in conversation at the other medical centers - different populations, different needs. I honestly know very little about this initiative as I don’t live in this community, but it’s clear that it should be understood as a modulator of capabilities. At the same time, EBNHC is also pioneering electronic prescription transmission from its EpicCare system.

The PHRs:

Partners, as I mentioned earlier is positioned for adoption, and are making plans to integrate the Patient Gateway into practices more. The system has good functionality and can provide staff experience in using technology to reach patients wherever and whenever they need to.

EBNHC, in contrast, does not yet have a PHR online. The considerations here are the impact of system upgrades, which must be done accurately, and continued optimization of portions of their system. Much like the Institute for Family Medicine in New York, they maintain a very robust EHR with a smaller staff pool. It’s actually very impressive. In fact, during my time there. Dr. Kuebler was updating parts of the system based on requests for her peers, like in near real time. That’s nimble! This can also make readiness for the jump to PHR more challenging at the same time. One key issue for this population is the need for a multi-lingual PHR. Coming to East Boston really brings home the fact that the time now upon us to address disparities in the way systems are designed so that they are accessible by the same population that accesses the health system. It felt very real when I was there.

Of course, Josh and I would like to follow both organizations as they continue on their journey to support their communities in the distinct ways that they do. I think both will contribute to the conversation significantly.

With thanks again to Drs. Wald, Bates, Kuebler, and Simon, and the staff and patients at Brigham and Women’s Hospital and East Boston Neighborhood Health Center for the gift of their time.

Massachusetts General, Beacon Hill Primary Care

Today was spent at two practices at within Massachusetts General primary care, part of Partners Health Care. Another new addition to the process was the fact that Jonathan Wald, MD, the Physician Lead for Partners’ Patient Gateway, also shadowed with us. I thought shadowing with both Josh and Jonathan was great. Both should be posting their experience here, so I will let them do that.

We actually started the day at the Stoeckle Center for Primary Care Innovation, hosted by Susan Edgman-Levitan, PA, its Executive Director. Susan is a hero for patient-centered care in my (and many individuals’) eyes and kindly introduced us to some of the innovation in primary care that’s happening here. And it’s great to hear about innovation in primary care. I honestly had to do a soft reboot during our discussion because there’s more happening here than I could glean prior to our visit. So, we’re coming back for more, and this is why it’s good to come in the first place.

First, the pictures, and then a description of the practices. Click on any to see them full size:

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