One of the priorities of the Ontario government is to develop strategies to reduce the disproportionate amount of health system use, and in particular of acute hospital care, by small sub-groups of people, such as seniors, those with complex chronic health issues or people whose health is complicated by mental health or substance use issues. The recent creation of nineteen “Health Links” in communities across Ontario is supposed to encourage increased coordination of care and personalization of care plans. Explicit goals include reducing the number of avoidable emergency room visits and the number of readmissions soon after discharge for these groups of people, as well as improving the experience had by the patient as they “journey through” the health care system.
In December 2012 Ontario Health Minister Deb Matthews declared that “Health Links will break down barriers for Ontarians, making access to health care easier and less complicated. By encouraging local health providers to work together to co-ordinate care for individual patients, we’re ensuring our most vulnerable patients – seniors and those with complex conditions – get the care they need and don’t fall between the cracks”.
As the Health Links strategies roll out across the province, representatives from across the health care spectrum, including hospitals, home care, primary care, mental health and rehabilitative care, are being brought together to brainstorm how to improve care for vulnerable patients who use emergency rooms frequently. Recently I attended a Health Links workshop to brainstorm how hospital based care could be improved through a variety of strategies, including one of health care’s latest, greatest attractions: “Experience Based Design.” Popularized in the United Kingdom’s National Health Service, it appears to be based on the idea that health systems can be improved based on learning from the experience of patients – which sounds reasonable and perhaps even wise. It aims to determine not only “were you satisfied?” with your care but also “what were you feeling?” during various experiences in health care institutions. Such feedback is generally achieved through phone or mail invitations to participate in focus groups where people are asked about their experiences following an encounter such as an admission to the institution.
I’m not sure if it was just me or if anyone else was experiencing a sense of the surreal when a facilitator told the story of her loved one’s admission to hospital. She reported that she and her family felt afraid to ask questions, perplexed by decisions made regarding the patient’s care and terrified that their family member was going to die. To a nurse like me, it sounded perfectly typical. But when she articulated these emotions, hospital staff seemed to have experienced an epiphany of sorts. Apparently, prior to these revelations, no one understood that patients and families had feelings during hospitalizations for life threatening conditions.
As a nurse, my first reaction was to wait for the good part – like, the solution may be to increase nurse to patient ratios so that nurses have time to attend to their patients’ emotional needs like we were taught is the essence of our profession. But the good part never came. This was the good part.
Seriously – who were these people? Had anyone spent any time in the health care system? Were any of them nurses? In fact, most of the people in the room were not direct health care providers but rather managers and bureaucrats. For me, the workshop was a grueling exercise which made me feel incredulous that we were actually spending time on this stuff, and angry that the people in charge of the health care system were really that clueless.
But while I suppose it is good that the Ontario health care system’s leaders have figured out that patients have feelings, I cannot help but think as well that this is rather beside the point. Who exactly is making use of hospitals disproportionately? Are these the people who are attending focus groups? Probably not. If we’ve learned anything from decades of research into the social determinants of health, it’s that many of our sickest patients are among the most marginalized in our society. Are we holding focus groups to ask them what is missing in the community to support them and prevent the revolving door syndrome?
As a health care provider who has been situated in community based primary care for most of the last twenty five years I can tell you that the most frequent users of the health care system are often people who are marginalized by their homelessness, poverty, mental health issues or substance use. For these patients, entering any health care system can feel frightening and humiliating. Here is how I imagine an ”experience based design” focus group of poor people might go:
“When you handed me a prescription I had no way to fill, I felt skeptical that I would get better.”
“When you suggested referring me to home care, I felt curious to know if they would come to visit me on the park bench I sleep on.”
“When you told me to take this medication three times daily with meals, I felt ashamed to tell you I can only afford to eat once a day.”
Come on, people. There are serious problems with the health care system, yes. But having ridiculous discussions which ask the wrong questions of the wrong people will not help us fix them.