Since the advent of the stethoscope, information-gathering technology has been helping doctors and other medical professionals improve patient health. Over the past decade, RWJF has funded a series of projects that suggest helping patients track and share data with their clinicians can strengthen the patient-clinician partnership and improve health outcomes. It makes sense that giving clinicians access to patient-tracked health data can improve the health of individuals and communities. As simple as the concept may sound, though, unlocking personal health data for clinical purposes has proven quite challenging.
Mar 10, 2014, 10:00 AM, Posted by Steve Downs
In writing about OpenNotes last summer, I argued that the practice of sharing clinicians’ notes with patients had moved beyond the question of whether it was a good idea (the landmark study published in Annals of Internal Medicine was pretty clear on that) to questions of how best to implement it. As more organizations adopt the practice, it’s clear that we’re now in a phase of implementation, and experimentation with different approaches and learning. Tom Delbanco, MD, one of the project leads, often compares open notes to a drug -- it does have some side effects and some contraindications for some people and some circumstances -- and we all need to understand those nuances.
Aug 14, 2013, 8:00 AM, Posted by Steve Downs
As Beth Israel Deaconess Medical Center (BIDMC) begins its institutional rollout of OpenNotes, it's becoming clear that we've moved into a new phase of the diffusion of this innovation. I've been in discussions with OpenNotes co-directors Tom Delbanco, MD and Jan Walker, RN, MBA about the idea of opening up physician notes to patients since 2008, when it was a bold, controversial idea that needed to be tested. The landmark study that Tom, Jan and their colleagues conducted over 2011-2012 and published last fall made it quite clear that the idea had merit: overwhelming percentages of patients found it helped them better understand their conditions, feel in more control of their health and even take their medicines more regularly. 99 percent of patients in the study wanted to continue with the practice. As for physicians, their fears went largely unrealized. It simply wasn't a big deal.
Recently we've seen more leading institutions climb on board with the practice of sharing medical notes: the VA is adopting OpenNotes, as is Group Health Cooperative; Geisinger, one of the original study sites, is expanding the practice throughout much of its system; the Cleveland Clinic announced its intention to share visit notes; and you can now read your doctor's notes at the Mayo Clinic. More will undoubtedly follow in the months and years ahead. As we move into the implementation phase at these and other institutions, the questions will shift from whether the idea is good to more practical inquiries around how well it fits certain specialties (like psychiatry) or departments; whether there are patterns in the types of patients (or physicians) that flourish under this approach; and how to manage the cultural changes that OpenNotes implies.
Jul 3, 2013, 11:15 AM, Posted by Steve Downs
On my way out to visit the Calit2 team that is running the Health Data Exploration project (sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio), I read Alissa Quart's excellent piece in Newsweek about the Quantified Self (QS) movement and health. The article covers many of the possible benefits as well as the downsides of self-tracking.
As Quart acknowledges, she also focuses quite a bit on the edge cases, the extreme QSers, painting a picture that can seem a little ridiculous. It’s inevitable; whenever a new technology emerges, a subset of early adopters takes it to the extreme, making the technology and its applications easy for us to mock (see "glasshole").
As we set forth on the Health Data Exploration project, we're being guided by a wonderful set of advisors. Here's a quick video post from one of them, Larry Smarr, the director of Calit2. Larry's a pioneer who's exploring the frontiers of quantified self, as you can see from the extraordinary talk he gave at TEDMED earlier this year.