I have written previously in the CMAJ that the medical community should be careful in using patient satisfaction scores as a metric to determine the quality of health care, as the most highly satisfied patients use the most resources and have the highest mortality. I am now starting to appreciate what medical professionals and hospitals should be doing instead of having all patients rate their satisfaction on a 0-10 scale: we need to seek out highly motivated people to join the ePatient revolution to educate and advocate for other people with whom they share a condition.
The best definition of an “ePatient” that I have seen is from the Stanford Medicine X ePatient Program:
1. A specialist and expert who is highly educated in his or her own medical conditions and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their health, learning from and teaching others. 2. An educator and role model for other patients and health care stakeholders
The Stanford program, which I learned about via Marie Ennis O-Connor (an influential writer on social media in healthcare and an ePatient herself), runs a conference to help ePatients advance their individual advocacy efforts.
It is encouraging to see multiple “patients as advocates” groups beginning to influence policy: The Patient-Centered Outcomes Research Institute (PCORI) and the Beryl Institute are two examples. Two ePatients, Dawn Richards and Zal Press, have made an excellent argument for the Ontario government to focus more on the patient experience, because “Satisfaction is the result of a single interaction that can evaporate, while experience is the full narrative arc that leaves a lasting impact”.
More personally, my recent experiences with ePatients has convinced me they are the ideal agents for change. I first met Deb Maskens when she kicked my [behind] in a debate at a conference for Kidney Cancer Canada (KCC), of which Deb is a co-founder. At the conference I learned how an ePatient-founded organization is able to bring together clinicians, researchers, and patients from all over Canada in order to disseminate best practices and help guide the future direction of research for kidney cancer. Deb and the KCC have also started the CanCertainty campaign that is tackling one of the great injustices in healthcare in Ontario and the Maritimes: the lack of universal coverage for oral cancer treatments. With public pressure mounting as a direct result of this campaign, there is hope for substantive change to the grossly unfair lack of public funding for oral chemotherapies.
Katherine O’Brien is an ePatient with metastatic breast cancer who runs a blog titled “I hate breast cancer” and is dedicated to increasing the awareness and visibility of women living with metastatic breast cancer.
Charlotte Schwartz is a friend whose son was born with Galactosemia. Her personal fundraising efforts raised over $15,000 and allowed the Hospital for Sick Children in Toronto to establish the first ever Galactosemia Research Fund.
These are but three examples of ePatients making a significant difference within healthcare. Physicians need to learn about ePatients and advocacy groups that exist within their medical specialty. We then need to identify people (patients and/or their families) and get them connected to any existing infrastructure, and we need to encourage them to get involved in advocating for their peers. Doctors need to recruit ePatients and then give them a seat at the table when determining how healthcare needs to adapt to provide optimal care.