Catching up: Finding the patient's voice & West Wing as reality tv
Part I: The Patient's Voice
Sometimes in health advocacy it is very hard to tell the real from the surreal. I just got back from Vancouver and a very interesting conference on "Where is the Patient's Voice in Health Professional Education?" Along with others from the US, Canada, the UK, Australia and other countries I got so excited about the thought that people from all different health disciplines and a wide range of health care systems were thinking about the role of the patient's voice in health professional education that it wasn't until I got home that I really thought about what we were saying: The patient's voice is so "not there" that educators of health professionals--doctors, nurses, occupational therapists, chiropractors and others--have to struggle to incorporate it into professional learning. And, as one presenter said, there are two kinds of changes, at least in medical education--stagnant and glacial.
Health Advocacy is actually built around the patient's voice, so we don't ask this question, but we do feel both pleased and perturbed that finding that voice is such a challenge to health professional education. Our friend and colleague, Meg Gaines from the Center for Patient Partnerships at the University of Wisconsin Law School, would insist on going a step further. She wants to know why the patient's voice is not attached to the service we give the patient, in the educational process. In the CPP model, interested graduate students from any discipline at the University can learn in a classroom cum "advocacy clinic" how to be a health advocate by providing, under supervision, advocacy services to clients in need. Of course clinical health professionals provide service, under supervision, to patients, but it seems like the structure of this education & service connection has tended toward the passive patient model. There are, in fact, complicating power relationships between a clinician and a patient being cared for, so the patient's voice may be structured by the class patient's powerless role. Interestingly, it seemed that most of the models of education that "found" and "inserted" the patient's voice in health professional education relied on community members, former patients, "simulated" or "standardized" patients, not people currently in an active patient status.
Part II: Oral History as the Patient's Voice
The conference I could not attend was in Providence, held by the Oral History Association. Pat Stanley, a student in the Health Advocacy Program who has been doing a lot of work on Narrative Medicine with Rita Charon at Columbia University, and has studied oral history at Sarah Lawrence, delivered my paper since I was in Vancouver. Our panel was, "Bridging the Divide: Oral History, Illness Narratives, and Voices of Advocacy." Pat and Rita have been talking about how oral history can be a tool for eliciting the patient's voice, and a resulting narrative might be helpful to patients, their professional caregivers, and to students. Laurie Rosenblatt at Dana Farber Cancer Center in Boston has done a lot of this kind of work, and uses "creative nonfiction" to craft, together with women patients who have advanced cancer, illness narratives that are used for physician education. There is a lot more to say about oral history and its use in understanding the patient experience, but I only wish I could have put those two conference together, so that when we looked for the patient's voice we could that oral history gives us one way of finding it.
Part III: Would the real Presidential Debate please stand up!
I got home from Vancouver (after 24 hours of hassle on United Airlines) in time to see the para-real tv debate on West Wing last night (11/6). If you missed it, this semi-scripted, live debate between the actors who play the Democratic and Republican candidates for President addressed the issue of health access in the US and coverage of the uninsured--at least on the east coast version. Having agreed at the beginning of the debate to debate without the usual rigid rules of timing, Santos, the Democratic candidate, appears to go off his own platform on health care, which is to gradually increase those eligible for government insurance. He declares that he doesn't like his own plan either, but adopted it because it is the only plan that might get through Congress. The best plan, says Santos, is a simple one: drop the words "over 65" from Medicare, and make Medicare into national health insurance for all. He follows this with a brief and simple argument about how overhead for Medicare is 2% as opposed to the 25% overhead for HMOs. Great plug for national health insurance before a viewership of > 9 million (significantly higher than the usual West Wing viewership.) This, of course, is the basis of proposals advocates of a national health insurance plan have been making for years.
One last note: Read, if you can, Paul Krugman in the New York Times today. Krugman asks how it is that Americans can pay so much for health insurance and, comparatively, get so little. He argues that not only are employees spending more for health insurance, but employer based health insurance is "an institution in decline." Like our imaginary Democratic presidential candidate, Krugman argues that a public solution would provide better coverage for less money and without sacrificing quality of care:
But I guess we prefer our reality on tv drama shows, which allows us to continue to live in the unreality of a health care system in which we pay more for less in order to support [fill in the blank].
Sometimes in health advocacy it is very hard to tell the real from the surreal. I just got back from Vancouver and a very interesting conference on "Where is the Patient's Voice in Health Professional Education?" Along with others from the US, Canada, the UK, Australia and other countries I got so excited about the thought that people from all different health disciplines and a wide range of health care systems were thinking about the role of the patient's voice in health professional education that it wasn't until I got home that I really thought about what we were saying: The patient's voice is so "not there" that educators of health professionals--doctors, nurses, occupational therapists, chiropractors and others--have to struggle to incorporate it into professional learning. And, as one presenter said, there are two kinds of changes, at least in medical education--stagnant and glacial.
Health Advocacy is actually built around the patient's voice, so we don't ask this question, but we do feel both pleased and perturbed that finding that voice is such a challenge to health professional education. Our friend and colleague, Meg Gaines from the Center for Patient Partnerships at the University of Wisconsin Law School, would insist on going a step further. She wants to know why the patient's voice is not attached to the service we give the patient, in the educational process. In the CPP model, interested graduate students from any discipline at the University can learn in a classroom cum "advocacy clinic" how to be a health advocate by providing, under supervision, advocacy services to clients in need. Of course clinical health professionals provide service, under supervision, to patients, but it seems like the structure of this education & service connection has tended toward the passive patient model. There are, in fact, complicating power relationships between a clinician and a patient being cared for, so the patient's voice may be structured by the class patient's powerless role. Interestingly, it seemed that most of the models of education that "found" and "inserted" the patient's voice in health professional education relied on community members, former patients, "simulated" or "standardized" patients, not people currently in an active patient status.
Part II: Oral History as the Patient's Voice
The conference I could not attend was in Providence, held by the Oral History Association. Pat Stanley, a student in the Health Advocacy Program who has been doing a lot of work on Narrative Medicine with Rita Charon at Columbia University, and has studied oral history at Sarah Lawrence, delivered my paper since I was in Vancouver. Our panel was, "Bridging the Divide: Oral History, Illness Narratives, and Voices of Advocacy." Pat and Rita have been talking about how oral history can be a tool for eliciting the patient's voice, and a resulting narrative might be helpful to patients, their professional caregivers, and to students. Laurie Rosenblatt at Dana Farber Cancer Center in Boston has done a lot of this kind of work, and uses "creative nonfiction" to craft, together with women patients who have advanced cancer, illness narratives that are used for physician education. There is a lot more to say about oral history and its use in understanding the patient experience, but I only wish I could have put those two conference together, so that when we looked for the patient's voice we could that oral history gives us one way of finding it.
Part III: Would the real Presidential Debate please stand up!
I got home from Vancouver (after 24 hours of hassle on United Airlines) in time to see the para-real tv debate on West Wing last night (11/6). If you missed it, this semi-scripted, live debate between the actors who play the Democratic and Republican candidates for President addressed the issue of health access in the US and coverage of the uninsured--at least on the east coast version. Having agreed at the beginning of the debate to debate without the usual rigid rules of timing, Santos, the Democratic candidate, appears to go off his own platform on health care, which is to gradually increase those eligible for government insurance. He declares that he doesn't like his own plan either, but adopted it because it is the only plan that might get through Congress. The best plan, says Santos, is a simple one: drop the words "over 65" from Medicare, and make Medicare into national health insurance for all. He follows this with a brief and simple argument about how overhead for Medicare is 2% as opposed to the 25% overhead for HMOs. Great plug for national health insurance before a viewership of > 9 million (significantly higher than the usual West Wing viewership.) This, of course, is the basis of proposals advocates of a national health insurance plan have been making for years.
One last note: Read, if you can, Paul Krugman in the New York Times today. Krugman asks how it is that Americans can pay so much for health insurance and, comparatively, get so little. He argues that not only are employees spending more for health insurance, but employer based health insurance is "an institution in decline." Like our imaginary Democratic presidential candidate, Krugman argues that a public solution would provide better coverage for less money and without sacrificing quality of care:
The funny thing is that the solution - national health insurance, available to everyone - is obvious. But to see the obvious we'll have to overcome pride - the unwarranted belief that America has nothing to learn from other countries - and prejudice - the equally unwarranted belief, driven by ideology, that private insurance is more efficient than public insurance.
. . . Why does American medicine cost so much yet achieve so little? Unlike other advanced countries, we treat access to health care as a privilege rather than a right. And this attitude turns out to be inefficient as well as cruel. The U.S. system is much more bureaucratic, with much higher administrative costs, than those of other countries, because private insurers and other players work hard at trying not to pay for medical care. And our fragmented system is unable to bargain with drug companies and other suppliers for lower prices.
. . . The economic and moral case for health care reform in America, reform that would make us less different from other advanced countries, is overwhelming. One of these days we'll realize that our semiprivatized system isn't just unfair, it's far less efficient than a straightforward system of guaranteed health insurance.
But I guess we prefer our reality on tv drama shows, which allows us to continue to live in the unreality of a health care system in which we pay more for less in order to support [fill in the blank].
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