We are pleased to welcome Charlotte Blease, PhD as our newest Keane OpenNotes Scholar. Her background is in philosophy and interdisciplinary health research. Her work focuses on the ethics and relational benefits of note sharing, including therapeutic benefits to patients. Charlotte is also interested in how access to visit notes empowers the most vulnerable health users, including those from demographic groups at greater risk of health inequities. She is a founding member of the Society for Interdisciplinary Placebo Studies and is affiliated with Harvard’s Program in Placebo Studies. Charlotte is the author of 60 papers spanning philosophical and ethical aspects of healthcare and medical internet research.
How did you first learn about OpenNotes?
A few years ago I read about OpenNotes in a popular book about medicine. There was a chapter on what Tom Delbanco and Jan Walker had done in establishing this incredible movement in the practice of medicine. My mind was blown. They really are rock stars in the healthcare field. We’re so far from this kind of transparency at home in Northern Ireland. I still have to phone my doctor within a certain time frame and can’t make an appointment more than 2 weeks ahead, never mind accessing my clinical notes online. So I was really excited to read about what OpenNotes was accomplishing in the U.S.
A few years later, I connected with Cait DesRoches, and we worked on a number of surveys together, largely focused on how clinicians feel about AI. She has been a terrific mentor. As has Sigall Bell with whom I collaborated on an article entitled “Patients as Diagnostic Collaborators.” Eventually, I got to meet the whole OpenNotes team, which was thrilling. I thought, “This is it! This is actually OpenNotes. This is where the magic happens.”
How did you become a Keane OpenNotes Scholar?
While I was working with Cait, we talked about how exciting it would be to collaborate further, and she brought this opportunity to me. I was immediately on board. OpenNotes is a perfect fit for me as an interdisciplinary health researcher. My background is in philosophy, but after a few years of teaching, I recognized that while a philosophical perspective was valuable it was also too narrow to tackle some of the real-world problems that I wanted to explore. From philosophy of science, I found my way into placebo research, which I pursued for seven years, and I loved it. Placebo researchers are a very diverse group – psychologists, neuroscientists, doctors, psychotherapists, acupuncturists, historians, and medical ethicists. And I was working with Ted Kaptchuk who knows Tom really well. The connection between placebo research and OpenNotes might not be obvious, but both research activities are about culture change in healthcare; they are patient-centered. They are value-driven whilst also being scientifically and intellectually rigorous, and they both have the potential to change lives profoundly for the better. For me, it was a natural transition.
What are you the most excited about working on this year?
There are three projects I’m keen to explore. The first regards ethical evaluations of OpenNotes. We sometimes say, or hear others say, “It’s the right thing to do.” And I want to think more critically about that. Why is it the right thing to do? Does it increase equitable care? Does it increase patient autonomy? Does it, in fact, reduce harm? These are some of the questions I think it is important to ask and explore on a deeper level.
Second, I’ll be working on a project with Sigall Bell focused on patient perspectives on diagnostic error. In our first paper, we took seriously Warner Slack’s idea that patients are the most underutilized resource in healthcare, and I’m excited about carrying this theme forward and exploring it in more detail. What are the obstacles to diagnostic accuracy according to patients?
I’m also hoping to bridge my placebo research with the world of OpenNotes by asking: Are there genuine health outcomes as a result of sharing visit notes with patients? Is OpenNotes itself a treatment or a type of medicine?
What is your personal experience with getting access to visit notes either for yourself or as a care partner?
Two people very close to me had medically unexplained symptoms for a long time, leading to delayed diagnoses. In one case, it took over 20 years to diagnose a rare illness. In both cases, doctors said that there was nothing wrong or offered some fairly outlandish explanations. Access to notes could have really helped everyone involved to track and understand those health issues better. The lack of access contributed to long term feelings of patient disempowerment and even disillusionment with medical professionals. Shared patient access could have closed the gap in finding accurate diagnoses.
More recently, someone very close to me was diagnosed with cancer. I know that appointments with the oncologist were incredibly difficult for him to remember or even absorb. It would have been extraordinarily helpful to have been able to read those notes via a patient portal, if only to feel more in control and less anxious. Relying on the internet to speculate and piece together bits of information directly adds to stress, and can even bring feelings of guilt and inadequacy about not remembering details that the doctor has conveyed.
And there’s a power dynamic between doctors and patients that needs to be addressed. At a time when patients can feel most lost or anxious, even the offer of access to clinical notes can give back some control by engaging patients as grown-up care partners. Sharing notes is an active way of shifting the balance of power into a more equitable exchange.
I think, for many clinicians, withholding access to notes is not perceived as an action. But where there is the real potential to share notes via online portals, the failure to provide and encourage patient access can be viewed as a choice with consequences. Although we must continue to investigate the effects of sharing clinical notes on both patients and doctors, we must also explore the effects of routinely not doing so, perhaps especially among those with chronic illnesses and complex health needs.
How do these experiences shape or influence your work as a researcher?
I think personal experience is a good place to start. In fact, personal experience is where we all start, and it’s where we learn what questions are important to ask. From there we can begin to investigate what hypotheses might be worth testing. But it’s important to be self-critical as well. You strengthen your own standpoint if you interrogate it seriously. We have to thoughtfully address physician concerns about sharing visit notes. Innovation always solves one set of problems while inviting new challenges, some of which we might not anticipate. My experience compels me to look for ways to make healthcare more equitable and transparent. I think OpenNotes could be a prime driver of those things, and I’m excited to test those hypotheses.