E-patients hold key to the future of healthcareBMJ 2018; 360 doi: https://doi.org/10.1136/bmj.k846 (Published 26 February 2018) Cite this as: BMJ 2018;360:k846
Today, patients are using the internet and other technologies as well as fellow patients to diagnose their own problems, find the best treatment, continually optimise their treatments, and even fund and conduct research.1 They are doing this not thanks to, but despite, healthcare.
The impression is that many clinicians would rather patients didn’t use Google for healthcare, and patients are keen not to annoy the people whose help we need. Of course, patients with chronic or long term conditions can become experts in their illness, but patients who show clinical knowledge sometimes experience disbelief or even active opposition from professionals. Work by The BMJ’s former patient editor Rosamund Snow showed how people with type 1 diabetes and high health literacy were hindered by healthcare professionals who were not experts in the specialty.2
What should the new healthcare look like? We don’t know for sure, but 17 years ago, Tom Ferguson, a health informatics professor, argued that physicians and other healthcare professionals should embrace the efforts of active patients.3 He said that granting patients’ wishes for more online communication with their doctors could reduce consultation times. He coined the term “e-patients” to mean patients (or their friends or relatives) who seek health related information online,4 which results in “better health information and services, and different (but not always better) relationships with their doctors.”5
How I became an e-patient
I was 32 when I had Parkinson’s disease diagnosed in June 2003, but I had known that something was wrong for almost 18 years. I experienced the first symptoms in my teens, and a few years later was diagnosed as having generalised dystonia.
I researched this diagnosis for hours in the library in the suburb of Stockholm where I grew up. I read page after page of medical textbooks, trying to make sense of the ways my body was failing me. Sometimes it felt as though my body simply ignored my intentions. For example, I was much slower than my classmates at buttoning my shirt in the changing rooms. My fingers would be slow and rigid, and I felt awkward and sad.
I was empowered not only by the knowledge I acquired, which helped me to better understand my symptoms, but also by the process of sense-making itself. To read medical textbooks and peer reviewed articles restored a feeling of control amid all the uncertainty.
When I was finally given the correct diagnosis, I knew that searching for information would be key to managing my disease. The process was easier and more effective because the internet had evolved immensely.
Now I take six prescription drugs to manage my Parkinson’s disease, combined in three different ways at six different times a day. When I need to change dose, I use my smartphone to track finger function, allowing me to optimise the timings. These days my neurologist tells me that I know more about research into the disease than he does.
I am definitely an e-patient.
E-patients using their initiative
E-patients use innovative strategies to improve their or another person’s wellbeing. They are adaptive, curious, and learn from their mistakes. They are involuntary innovators who willingly share both their problems and the solutions they discover.
One study indicated that 8% of the solutions developed by patients with rare diseases and their caregivers were novel to medicine.6 There are plenty of e-patients all over the world. Here are some examples.
People with type 1 diabetes have a long tradition of being actively involved in their treatment: they continually monitor their blood glucose and adapt insulin doses accordingly. Dana Lewis is a pioneer in patient led design of medical technology and has helped develop the Open Artificial Pancreas System (OpenAPS), an open source system for managing type 1 diabetes mellitus that incorporates feedback control.7 She and other members of the diabetes community, like Tim Omer, argue that patient communities are an experienced and skilled resource that is underused in healthcare.8
Hugo Campos has an implanted cardioverter defibrillator. He collects information about his diet, exercise, and other lifestyle factors to optimise his health and wellbeing. He wants access to the data from the device in his chest to add to this picture, but the manufacturer will give the data only to doctors. Hugo uses social media to argue for patients to have access to data from their devices.9
Why are e-patients taking matters into our own hands? Why are we doing all this work? Do we lack trust in the doctors and nurses who have trained for years to be able to help us? Do we think we can do better?
We definitely don’t think we know medicine better. But we are convinced that it is our responsibility to be as engaged in our health and care as we can and that the results of mutual partnership with our healthcare providers are far better than if we don’t collaborate.
The future of healthcare
Whether healthcare professionals acknowledge us or not, e-patients are already here. We use all the possibilities that technology presents to maximise our wellbeing. You might even say that we are our own doctors, using our knowledge and technology to reach the best possible outcome.
Imagine if doctors, nurses, and other healthcare professionals could learn from the work that e-patients like Dana, Tim, Hugo, and I do. Imagine how healthcare could improve if we could better understand the drivers and obstacles that e-patients encounter. If our knowledge and experience were taken into account in a more structured way, a different healthcare system would emerge. That system would be more attuned to all patients’ expectations and abilities. Patients who want to be autonomous will be supported to be so. Patients who cannot be as engaged as e-patients will benefit from the healthcare resources that we don’t need.
Life as a patient is a lot about time. There’s a lot of waiting involved. You wait on the phone to book an appointment to see the doctor. You wait in the doctor’s office. You wait for test results. You wait for a diagnosis.
I see my neurologist once or twice a year for about 30 minutes each time. So he observes my symptoms, and assesses the effect of the treatment he prescribes, for one hour a year. During the rest of the year, I am the one who can observe and learn about my condition and symptoms.
Perception of time also changes when you have a long term condition. For my doctor, seeing me every six months or so is enough to assess the overall progression of my disease. Because there are no disease modifying treatments, from his perspective he doesn’t have a lot else to offer. But for me, living with this condition 24 hours a day, time has a different meaning.
For me it’s important to make sure I do what I can to live as well as possible every single day of every single year. And that makes me extremely motivated to learn as much as possible about the disease. For professionals not to acknowledge that and engage with me to learn as much as possible about what I need to make my journey smoother wastes both our time.
The type 1 diabetes community rallies on social media under the hashtag #WeAreNotWaiting.78 Patients are sharing ideas and experiences, learning from each other, and collaborating on projects globally. This has led to medical devices developed almost completely without professional involvement.8
The community in Parkinson’s disease is not waiting either. Together with other patients, I have published articles about how we can contribute to our health and care when our healthcare systems have not yet responded to the latest research. One article describes an approach to multidisciplinary teams10; another our patient driven study.11
E-patients exploit the fantastic possibilities of the internet, but we are careful not to take unnecessary risks. We acknowledge and honour scientific principles, which is why so many of us have devoted so much time and energy to learning as much as we can about the healthcare system.
Do you want to be an obstacle or an enabler for your patients? I have an incurable progressive neurological disease. I cannot afford to wait. I am not waiting.
Sara Riggare has been managing Parkinson’s disease since her teens. She has an MSc and is currently pursuing a doctorate in health informatics at the Karolinska Institute in Stockholm, Sweden. The essay is based on a keynote presentation she gave at the International Forum for Quality and Safety in Healthcare in London 2017.
Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not externally peer reviewed.