Posted on October 30, 2018 by Julie Drury
Patients spend 8,760 hours a year managing their health. There is no doubt they are health care experts and have an incredible depth and breadth of lived experience invaluable to a learning health care system.
Don't miss Julie Drury's session at the Partnership Conference on Tuesday, November 13.
Patient, family and caregiver engagement is not new. In fact, many will reflect that patients have always been ‘engaged.’ As individuals concerned about our health, how could we not be? Yet systemic barriers remain for patients to truly engage in their care: access to health records; navigating a complex health care system with few tools for proper engagement; and equity barriers related to language, culture, rural/remote communities, etc., are among many of the challenges patients face.
We are continuing to evolve toward a 'digital health era' where the resources and tools to address barriers to patient engagement and patient partnership with health care providers and with the health system are available to us all. However, access to these resources has been limited and siloed to individual organizations, and hampered by outdated policy.
As patients continue to press for better care, they are making it clear that they must be invited to partner with health care providers, hospitals, health care organizations and government. Patient advisors are emerging as system leaders in challenging the status quo of health care system thinking and design that is more 'patient centred' and responsive to patient experience and patient outcomes.
There have been some interesting and provocative critiques about patient engagement by patients themselves. You may want to take a moment to read/listen to Jennifer Johannesen who speaks about patient engagement and partnership. Jennifer is a medical mom, author and bioethicist. Most recently, she was a keynote speaker at the 2018 Cochrane Colloquium.
She has a lot to say about how effective patient engagement really is. Her opinion is that it has been co-opted and defined by institutions and not by patients, and how patient advisors might ‘adopt institutional goals’ as a function of how institutions organize and manage patient engagement. Tokenism, virtue signalling and questioning the true effect and impact of patient engagement are themes of her work.
David Gilbert is a patient Director in the National Health Service (United Kingdom) for Sussex Musculoskeletal Partnership. David’s role is interesting as one of the first paid patients in a leadership role. He blogs at futurepatientblog.com, tweets at @davidgilbert43 and writes about his experiences as a patient with mental illness and as a professional patient leader in a large organization. In fact, I love the thoughtful and positive disruptor piece he recently penned for a British Medical Journal (BMJ) opinion piece about the role of patient leaders, the importance of developing them and who actually gets to be one. David also speaks truth to power about virtue signalling and tokenism in patient engagement and challenges his own organization to rely on outside opinion with equal value to ‘insider’ opinion.
“Patient and public engagement, as traditionally conceived, buffers power by distancing patients from decision-making. Thus, it maintains the status quo by preserving the institutional authority of professional system leaders. Ironically, when engagement is seen to fail, as it often does, this can be attributed to the lack of value that patients bring rather than to faulty mechanisms,” he wrote in September 2017.
I offer Jennifer and David as examples of why positive disruptive critique is important for patient engagement, and how it helps us to think about the engagement models of organizations.
As patient advisors, I believe we need to be constantly aware of what we are being asked to do, how we are being ‘engaged’ and if it passes the ‘smell test’ for engagement. We need to continue to share our collective wisdom about the effectiveness and efficiency of our health care system.
As patients, family and caregivers we understand best what is working and not working for patients across the health care system. We want a seat at the table as partners to help shape a learning health system. We have exciting insights to share if given the opportunity.
Have a comment about this post? We’d love to hear from you.
Chair, Patient and Family Advisory Council, Ontario Ministry of Health and Long-Term Care
Julie Drury is the inaugural Chair of the Minister’s Patient and Family Advisory Council for the Ontario Ministry of Health and Long-Term Care. Julie is passionate about the patient / family / professional partnership and experience in health. In her role, she facilitates and provides the patient and family perspective in health care policy and decision making.