This interview is the sixth in a series of brief chats between CFAH president and founder, Jessie Gruman, and experts our CFAH William Ziff Fellows who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
Shoshanna Sofaer believes there is an important distinction to be made 'between someone who is engaged in their health care and those who are in a confrontational relationship with the health care system.''
Gruman: What recent changes have affected people's engagement in their health and health care?
Sofaer: I feel like the environment for this work has gotten bad. The reason? The zeitgeist of the times is about deep mistrust and people's limited sense of hope that they can do anything about their own circumstances. People have lost faith with all sorts of institutions and authority. They are watching polarization in Washington and in their own communities and families.
Somehow the "truth" has lost importance. Facts are not important. This is the context in which asking people to change anything because of facts or evidence is a problem. I guess, in a way there is an opening: for some people who have a sense of basic competence, they can say "I can't depend on these institutions. I have to do this for myself."'
Gruman: Do you think this phenomenon is fairly widespread?
Sofaer: Unfortunately, the people most in need of being engaged are the least confident in themselves. This makes me very worried. I don't know how you ask people who are feeling so unsupported to take a chance on new behaviors.
Certainly engagement refers to a new orientation to health generally, but any of the engagement behaviors implies a different role with regard to their health. I'm not thinking about younger, computer-literate people. I am thinking about older sick people'those who use the most health care, who need the most health care and who are being battered and buffeted by what's going on. The confluence of economic supports for people is being eroded: Medicaid will be harder to deal with; all kinds of local services and community programs are being cut back severely. This doesn't help our aims.
Think about the working single mom who has a kid with asthma. She's desperate to keep her job and afraid that her health insurance will be cut back (if she has any). ' People are hurting. The environment of the political dialog about the debt ceiling poisoned the atmosphere but also distracts us from looking at what the effects of cut backs are on normal people. This makes our work harder - and more essential.' There isn't a lot of hope out there.
Gruman: But this doesn't seem to have put the brakes on the rhetorical use of the idea of patient engagement'
Sofaer: Engagement' right now is a bumper-sticker phrase that is mostly rhetorical.
The bumper-sticker appellation means there are some people and institutions that will devote time and resources to it. Among a subset of hospitals, there is a sense they have to address this. But changing things to support engagement is not implementing interventions around what people should do'it's making it possible for people to do the whole range of things they must do to function well.
There is a difference between someone who is engaged in their health care and those who are in a confrontational relationship with the health care system. Many of the people who are writing about engagement think patients should confront their doctors and nurses and demand their rights. People need to know how to help themselves without crossing lines but without taking clinicians off the hook. This is a fine balance. The nuance of this doesn't get through. Being engaged for your own health and your family's doesn't mean being an advocate for system change. We need engagement at both the micro and 'system' level but we need to recognize the difference.
More patient engagement inteviews with our Ziff fellows by Jessie Gruman