Today it became official. I've been named to the board of the Winnipeg Regional Health Authority. Something I would never have even considered only a few short years ago.
This is a daunting challenge for someone who has only recently been hurled into the role of caregiver. This has been an amazing education to me as I have become an advocate for patient and family centred care (PFCC). The WRHA and health care as a whole have many complex and daunting challenges to address. Some may say the challenges are impossible...but they aren't.
The Rise of the E-Patient
Many may consider my appointment as a bit odd. I am not a health care professional. I do not work in a health care facility. What many members of the public may not realize is the growing number of patients, caregivers, and patient families who are getting more involved in their own health care and in the health care system as a whole. For people like me who are immersed in the health care process on an almost daily basis, we provide a unique experience and perspective to the health care debate. Patients and families are gaining a sophisticated knowledge of the health care system with the proliferation of social media, online medical resources, and most importantly through peer support. For many of us getting involved is much needed therapy. Many people who are frequent users of the health care system are now becoming "e-patients" (engaged - empowered - equipped - educated). For us, there is no turning back.
Nothing about us Without Us
At the infancy of the "patient and family centred care" movement there were many groups formed to try to address patient concerns. Patients came to a point where they were no longer happy being subjected to anything the health care system would deliver to them. We often hear of patient advisory committees. Carefully managed groups that in some cases have become successful and in other cases not. I would assert that the reason that some of these groups have failed is simply for the reason that they were token groups with little to no impact. As soon as committee members would realize their concerns and feedback would have no impact they would quickly step back from non-effective committees. Patient/family time is precious and finite. As a volunteer, if you see no benefit you quickly become disillusioned and withdraw. This is very common. On the other hand, groups that were successful were given a voice with decision makers and were given opportunities to have their message heard. These opportunities have taken many forms that may have included strategic planning, patient centred design, development of health care policy, or simply sharing your patient story. These groups have thrived and have begun to make inroads in health care. Smart health care managers have seen the benefit of these groups and have embraced the PFCC mantra of "nothing about us without us." It is these health leaders who have insisted on garnering input from patient experts. However, this kind of engagement is not widespread.
Having had some success in getting the voice of the patient voice heard, I believe we are at a crossroads. The crossroads of patients stepping away from patient advisory committees and becoming health care leaders. I hope my appointment is one of those steps, but I know that I am not alone. Patients and caregivers are taking leadership roles all across our country. This is a natural progression and a very necessary one.
Respecting the Patient Story
For myself I need to remember this is not about me and my family's journey. It is about the many people who use our health care system and what is best for those patients and their families. All of our experiences are unique and different. As I have gotten to know other patient advocates i am well aware that there opinions differ from mine, as their experiences differ from mine. How can I best represent such a diverse group? Very simply I need to respect the "patient story." That is the most daunting task that I have. As I take on this role, it is incumbent on me to listen to, and learn from, the patient experience and the patient story.