The primary focus of this website is patient engagement: helping the individual patient make informed health care decisions consistent with her circumstances and personal goals. Yet there is another consumer perspective that gets short shrift – that of the citizen in promoting health care policy that serves the best interest of society at large. For more than 20 years, I have been asking the public to take off their ‘patient hat’ and put on their ‘citizen hat.’ As an RN whose previous responsibilities as a clinical professional were always to the individual patient, this shift might seem disloyal to my profession. In fact, my ‘disloyalty’ started almost 30 years ago when I had my first inkling that health care policy cannot focus solely on the needs of individuals.
I was working in geriatrics administration and went to a debate on the Medicare cost crunch (this was the mid-1980’s!). I didn’t know much about how Medicare was funded, but I remember thinking, maybe Medicare needs to be more means-tested than it is. It also occurred to me that health care is sui generis because, unlike other significant social issues (e.g., education, the environment, or even public health), we each interface with the health system as unique patients, not as populations. Yet, like other societal services, most of us pay for health care collectively, through taxes or group insurance. The tension between the individual and the collective seemed to me to be inevitable and insoluble. But at the time I thought no more about it.
In the meantime my husband, a physician working in managed care, became very active in bioethics. Over dinner we wrestled with conflicts between patients and providers and the interface of medicine and the law. Out of these discussions the role of ethics in health policy started to become clearer: policy cannot be derived from medical facts alone but must take into account our views of justice, freedom and fairness. But whose views should count when our values are so diverse? And if health care policy doesn’t have the luxury of being solely focused on the individual, how are individual and collective interests balanced?
In 1991, I saw a job announcement for a position whose role was to ‘educate and involve the public in issues relevant to individual and societal health care decision-making….’ I was hooked.
It’s now been over 20 years that I have developed and led deliberative sessions with the public, asking average citizens to wrestle with complex health policy issues. If I had to give one reason why this work is so satisfying, it is because I relish those “ah ha” moments: when individuals – people with no background in health policy – understand the tension between competing priorities and then try hard to identify and express their views on balancing individual and societal needs. While the enlightenment of individuals is compelling, I (and others who do public deliberation) hope that the results of these deliberative processes will assist communities trying to make the best decisions when faced with challenging trade-offs.
We have a long way to go to reach high-quality, affordable health care, and policy makers need all the help they can get. Individual patient engagement is essential but not sufficient. Patients must also become social decision-makers, understanding and accepting that they also have a role in assuring that health policy works for the many, not just the few.