Visiting us from Sweden, she is an associate professor in health informatics and a senior lecturer in implementation science at the Uppsala MedTech Science & Innovation Centre. Her research is focused on user-centered systems that support collaboration and patient empowerment.
How did you first learn about OpenNotes?
I was a part of a research consortium in Sweden called DOME (Development of Online Medical Records and E-Health Services), which focuses on studying what happens when patients get access to their medical records online. There’s obviously a lot of overlap with the work that OpenNotes has been doing in the States, so I have been following OpenNotes for a long time. It’s been instructive to read the research coming from OpenNotes and see how it parallels what we’re doing in Sweden.
How did you become a Keane OpenNotes Scholar?
Data transparency in healthcare is not just a local issue; it’s a global concern. A few years ago, I was invited to be a part of a five day international workshop focused on transparency in healthcare at Salzburg Global Seminar in Austria. I was invited by Sara Riggare, a strong patient advocate and researcher who has taught me a lot about the importance of patient-driven innovation and the roles of “lead patients” or e-patients in transforming healthcare. And of course, OpenNotes has been at the forefront of healthcare transparency in the U.S. While there I met Tom Delbanco and Jan Walker, the co-founders of OpenNotes, who were leading the seminar in Salzburg. And I got to know a patient advocate, Liz Salmi, who now works for OpenNotes. It was exciting to see how we all faced similar challenges, but also were seeing many of the same benefits from greater transparency, even across different cultures and health systems.
I kept in touch with Tom, Jan, and Liz, and we talked about how nice it would be to work together more closely. We even wrote some workshop proposals together. And then one day Tom called to offer me this position as the Keane OpenNotes Scholar, and I was ready to accept!
What are you most excited about working on this year?
We are still clarifying what my work here will be, but I’m most excited to explore the different ways sharing notes is implemented here and in Sweden, and other countries as well – to see what we can learn from joining these different perspectives. I hope we can explore best practices for the implementation of note sharing, and I’m also excited to work on the OurNotes projects – examining how patients can contribute directly to their medical records. We currently are doing that already in some limited ways in Sweden. I’m also interested in learning how to help doctors and patients utilize notes to improve communication and care. Right now, note sharing is the default practice everywhere in Sweden, but in many places both clinicians and patients don’t know that notes are being shared, and if they do, they don’t really understand how to use them as a tool to work more effectively together. I’m very interested in finding ways to help clinicians and patients understand and make good use of their clinical notes.
Have you had any personal experience accessing and reading clinical visit notes either for yourself or in the capacity of a caregiver?
Oh, yes. I access both my notes and test results frequently, both for myself as a patient and for my children as a care partner. Even in moving to the U.S. from Sweden, it was helpful to have access to my children’s records. We needed to know if they were immune to chicken pox so that they could attend school in the States. We had the tests done, but were told the results would likely not be released to us in time. Thankfully, that afternoon, I was able to log in and see the results! The test results still have not been sent, but I know my children will be able to start school because I have access to their visit notes and other records.
On the other hand, a couple of years ago, my father was battling cancer, and they had not started sharing notes yet in his region of Sweden. His care was spread across multiple health systems and included several different clinicians, and our whole family was involved in helping him with his care. Without access to his notes, it was difficult to make sure everyone was on the same page. It was a struggle to make sure that his entire care team, including his various doctors, all understood and agreed on his care plan. Having easy access to my notes and my children’s notes, it was clear to me how much easier it would have been if he’d had online access to his visit notes.
Do those experiences shape your work in this field?
They absolutely do. Access to your full medical record is a human right. I don’t see how anyone can still argue that patients should be excluded from their own information. Having these experiences definitely impacts how I approach my work and where I chose to focus my research. And that’s true for others as well. A study of healthcare professionals in Sweden showed that those who had personal experience of reading their own notes or who had read notes in a caregiving capacity felt more positively about sharing notes than those who had no personal experience with such practice. This is one of the more important divides we have to figure out how to bridge. We interview a lot of clinicians who find it difficult to understand how sharing notes would be necessary or beneficial for patients. But, of course, the patients we interview highlight many benefits of having access to their notes. That’s not part of the conversation doctors have with their patients. Part of our mission is to illuminate the patient experience for clinicians and help them connect that to their practice of medicine. I want to help clinicians see how the benefits of greater transparency and sharing notes specifically far outweigh the risks and challenges that may arise.