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Today we’re launching the next video in our Open Source Stories "Common Connections" series, "Common Connections: Healthcare Made Human." The series features scholars, CEOs, educators, and engineers coming together to find the common threads in their work, and exploring the potential for future open source innovation and building unexpected connections.
"Common Connections: Healthcare Made Human" brings together Dr. Tom Delbanco, co-founder of OpenNotes, Liz Salmi, senior strategist of Research Dissemination for OpenNotes and Jan Walker, co-founder of OpenNotes who first met after appearing together in our film, “The Open Patient: Healing through sharing.” Five years after their initial meeting, the three are now working together to make their vision for greater transparency in healthcare a reality.
We’ve invited the OpenNotes team to share their recollections on their initial meeting and the impact it has made on their cause.
Who would have guessed a documentary film would trigger a seminal turning point in open and transparent communication in healthcare?
Five years ago, Red Hat separately invited each of us to participate in the film, The Open Patient: Healing Through Sharing. While two of us, Tom and Jan (doctor and nurse), were focusing on leveling the playing field by inviting patients (and often their families) to read what we wrote about them in their medical records (we call these "open notes"), Liz and Steven Keating, both patients with a life-threatening illness, were working hard to take charge of their own health information… and by extension, their care. With the tragic loss of Steven, this chance encounter means more to the three of us every month.
OpenNotes—funded by private foundations, federal grants and generous donors—started in 2009, with the goal of studying the effects of having doctors, nurses and other clinicians invite patients to review what they wrote. The results of early demonstration projects were highly positive. Patients reported many exciting and clinically important benefits, and growing numbers of clinicians soon decided to adopt this fundamental change in practice.
By the time the film was released, 10 million patients in the U.S. had gained access to their clinicians’ notes via secured, online ‘patient portals,’ and Tom and Jan were finalizing plans to lead a seminar in Salzburg, Austria, designed to generate ideas and initiatives that would bring to other nations what was happening in America and other parts of the world. At that seminar, teams of clinicians, policy experts, patients and assorted change agents from 11 countries worked hard for a week.
At this meeting Liz brought the patient’s voice into sharp focus. Ideas about patients leading research initiatives took hold, and many voices joined in supporting patients as advocates for open communication. By the end of the week, Tom and Jan invited Liz to join the OpenNotes team, even though she lives in California and OpenNotes is based at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, MA.
Since that time, even though she has not had traditional research training, Liz has conducted meaningful studies and published several papers, including editorial commentary in the British Medical Journal (BMJ). She has addressed major medical meetings and frequently joins other members of the OpenNotes team in presentations.
In April 2021, open notes became mandated by federal rules implementing the 21st Century Cures Act. Today, patients nation-wide are entitled to rapid, free access to virtually all of their medical records that reside on computerized systems. This includes the notes composed by doctors, nurses, or therapists of all types.
This revisit to The Open Patient comes at an important time in what is rapidly becoming a global effort to have patients control and curate their own records—much as Steven envisioned in the original documentary. A lot may change over the next five years as patients, who are for the first time reading the words their clinicians write, are themselves opening new lines of inquiry.
Right now, patients are beginning to co-generate their notes with clinicians. OurNotes, a rapidly expanding OpenNotes initiative, invites patients prior to visits to describe how they have been doing and to specify the goals they have for an upcoming visit—contributions that can then become part of a note.
Additionally, care partners (caregivers) are gaining far more attention. Family members are joining the move toward open and transparent communication, benefiting both those who are ill and those caring for them. In the next few years we will see how information stored by health professionals will be available for download to health-related apps controlled by patients who integrate and merge records of their care, no matter where it occurred.
Change can be slow in academic medicine, but the OpenNotes team and scholars around the world are asking more questions than ever before. When The Open Patient was released in 2016, Steven was among a few patients exploring their records and beginning to lead their own self-research. Today, it is becoming increasingly clear that healthcare can improve when the healthcare profession partners with patients in exploring topics particularly meaningful to individuals with lived health experiences.
As exemplified by Liz and growing numbers of patients, the next wave of OpenNotes started a few years ago. It is spreading rapidly today. We think of it as the OpenNotes “expanded universe” of research, implementation and education that will bridge the next decade of transformation in clinician-patient-researcher relationships.
For more information about Open Source Stories and "Common Connections" visit Open Source Stories. Watch the film, get inspired and join the conversation on social media using the hashtag #opensourcestories.
About the authors
Delbanco is the John F. Keane & Family Professor of Medicine at Harvard Medical School. In 2010, he co-founded OpenNotes to advocate for greater openness in medical records. The organization’s research shows how transparency improves outcomes and creates trust in healthcare.
At 29, Salmi was diagnosed with a malignant brain tumor. She open sourced her cancer journey, blogging about her symptoms, her recovery, and her quest to understand the records in her healthcare provider’s online portal. That experience led to her role at OpenNotes.
Walker, an Associate Professor of Medicine at Harvard Medical School, is a nurse by training. Her research focuses on patients’ perspectives on hospital care and their experiences with electronic medical technologies.