We have long known that there is an imbalance of knowledge and power in the doctor-patient relationship. It exists in other relationships too—between patients and nurses, pharmacists, therapists, and other healthcare professionals. But greater transparency between healthcare professionals and their patients empowers patients and leads to better health outcomes—and I’ll tell you why.
This week I have been fortunate to attend the Salzburg Global Seminar Session 553 with around 50 other clinicians, patients, technology experts, social scientists, and communication experts from around the world. Entitled “Enriching and Charting the Patient-Clinician Relationship,” this was a conference like no other: immersed for five full days in discussions, debates, presentations, knowledge cafes, workshops, and walks while resident in an Austrian lakeside palace, the conference culminated in some truly creative thinking about what the future of the patient-clinician relationship could look like.
I have had two strongly influential experiences in Salzburg. The first was meeting Jan Walker, assistant professor of medicine at Harvard Medical School. As co-founder of OpenNotes in the US, Jan outlined a pilot in the early 2000s which involved 105 volunteering primary care doctors and 19,000 of their patients. Patients were given open access to their medical notes online. Despite fears that doctors’ workloads would spiral out of control as patients raised questions or sought to correct real or perceived errors in their notes, this did not happen. In fact, patients reported increased understanding of their healthcare conditions and better motivation to adhere to treatment. At the end of the pilot, 99% of patients wished to continue with OpenNotes and all doctors agreed to do so. Today, OpenNotes has been adopted by more than 80 hospitals and clinics in the US, with 12 million patients in primary and secondary care enrolled. OpenNotes is demonstrating positive effects on patient engagement, understanding and outcomes—just by offering patients access to their notes.
The second experience was meeting Sara Riggare, a health informatics doctoral student at the Karolinska Institutet in Sweden, who was diagnosed with Parkinson’s disease in her early 30s. Sara speaks for millions of patients the world over with a single basic truth: with just 1 hour per year visiting her neurologist for an outpatient appointment, and no Parkinson’s specialist nurse, she spends the vast majority of her time in self-care—8,759 hours of the year, to be exact. It is probably true that any patient with a chronic condition spends most of their time in self or community care. In other ways, however, Sara is also an unusual patient: she tracks her Parkinson’s symptoms using an app on her Smartphone that counts the number of finger taps she can achieve. Plotting this data for both her left and right hand at different times of day against the time she takes her Parkinson’s medications, she has successfully altered her medication timings to minimise her symptoms. Sara shares the data she collects with her neurologist, when she visits annually and is demonstrating the positive power of patients being transparent with their own health data.
My week at the Salzburg Global Seminar made me question whether patients in the UK are empowered through transparency. My clinical training taught me to take a history (including asking about ideas, concerns and expectations, though this was modern thinking at the time), perform a clinical examination and investigations, then to formulate a diagnosis and differentials. I learned to devise management plans, perhaps in consultation with clinical colleagues, and to communicate these plans to my patients. But beyond answering questions as part of the history, patients have little active part in this process.
I was not encouraged to share medical notes with my patients. Patients may of course request access to their medical notes, but few would know how to do this. Yet there is a strong case to offer patients access to their notes, in both primary and secondary care. In both the US and Sweden—where Sara is from—they already do.
There are steps beyond offering patients access to their medical notes, which can improve healthcare in other ways. For example, patients—as the users of healthcare services—are well placed to inform service improvements. Patients and their carers—as those affected by disease—are best placed to educate others about self-care. And patients—as sufferers of disease—are able to design meaningful patient-reported outcome measures (PROMs) and formulate research questions that really matter to drive medical research forward. As I continue my clinical career, I will remember that patients can do so much more than be passive recipients of medical care. If empowered as active partners in healthcare, patients might help us change the world.