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.
This commentary originally appeared on the RWJF Pioneering Ideas blog.
Think about it for a moment. When you consider what you "know" about health, where does that knowledge come from? While we all have our sources—doctors, friends, news articles—our knowledge at its core is derived from research. And that research is built on a foundation of data.
Data about health typically come from several types of sources: clinical data, gleaned from electronic health records or chart pulls, and billing and claims data, which are byproducts of the health care process; and public health surveillance data, which are specialized collections about particular topics or populations. All of these sources can then be supplemented, at a considerable cost, by original data collection efforts specific to a particular study.
These different types of data are like pieces of a jigsaw puzzle; when assembled, they create a more complete picture of health.
But a piece of the puzzle is missing. Or it has been up till now.
May 20, 2013, 12:59 PM, Posted by Steve Downs
In a post this week on the Kevin MD blog, Jon Darer, chief innovation officer for the Division of Clinical Innovation at Geisinger Health System, discussed Geisinger's decision to roll out OpenNotes to most of its physicians and patients.
Geisinger's approach highlights the choices that will be facing many health systems: The results of the OpenNotes study, published last fall, provide compelling evidence to go forward in general, but there is a need to be careful and thoughtful about how to do so. Different specialties and different patient populations have special circumstances that need careful consideration. And each institution has its own culture to be navigated. As more early adopters like Geisinger move forward, we'll learn more about how best to implement this practice and through that learning, make it more widely available. — Steve Downs
May 16, 2013, 8:00 AM, Posted by Steve Downs
New York State Commissioner of Health Nirav Shah is the Billy Beane of health care.
Let me explain.
Billy Beane—the general manager and minority owner of the Oakland Athletics—and made famous in the book Moneyball: The Art of Winning an Unfair Game by Michael Lewis, was made even more famous when Brad Pitt portrayed him in the movie adaptation. (Generally speaking, having Brad Pitt portray you is a good way to get famous.)
For those who aren’t familiar, Moneyball is about how, under Beane’s unconventional leadership, “the Oakland Athletics achieved an amazing winning streak while having the smallest player payroll in Major League Baseball. (Short answer: creative use of data.)” (Thank you, New York Times.)
May 8, 2013, 8:00 AM, Posted by Steve Downs
“Today, Geisinger Health System, one of the nation’s premier health systems, is taking an important step to expand OpenNotes. We hope other systems follow Geisinger’s lead to share doctors’ notes with patients, giving them information they can use to participate more meaningfully in their care." – Steve Downs
This excerpted post by Geisinger CEO Glenn Steele, MD, first appeared in October 2012, when results from the OpenNotes pilot were released. Geisinger was one of three health systems that participated in the study.
…As a health system CEO who also is a doctor, I believe it is an ethical imperative that our patients at Geisinger know everything that we know about them. And, I think it’s a logical imperative that if we can open up our medical visit notes to our patients, we’ll find out what they understand and what they don’t, so we can answer questions and work as partners to chart a path to better health.
Apr 22, 2013, 8:30 AM, Posted by Steve Downs
Sometimes the best ideas come from unexpected sources – beyond technology, beyond research, beyond clinical trials. Sometimes, the future of health and health care lies somewhere else: in the people who will bring it about.
And sometimes, those people are children.