H1N1 Vaccine Debate Shows Engaged Patients Cut Both Ways

Patients going beyond doctors' medical advice will have unintended consequences for the rest of us.

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Jessie Gruman is the founder and president of the Center for Advancing Health (CFAH), an independent, nonpartisan, Washington-based policy institute.

After spending weeks scouring the Web, consulting with her child's pediatrician and allergist, listening to TV doctors, and quizzing her friends, my colleague has decided not to have her son vaccinated against H1N1 flu virus. She joins other mothers, pregnant women, healthcare workers worldwide, and others in rejecting the public health messages about the importance and safety of the vaccine. She is a smart, savvy consumer of healthcare, and this decision represents thoughtful consideration of a variety of information.

Her decision illustrates an accelerating trend: In response to a constant stream of messages urging people to become active participants in their healthcare and an equally steady stream of news reports on the uncertainty of science, conflicts of interest among doctors, and the dangers of medical care, some people are doing just that.

But those who exhort us to be more active in our care have made the easy assumption that if we do so, we will make the same decisions for ourselves that our clinicians and public health officials would have made for us: We will stop smoking, follow mammography guidelines, take our pills as directed, and get the vaccinations. The considerable number of those who plan to refuse the H1N1 vaccine is proof that this assumption is false and that our engagement will unquestionably have an impact on our own health and the health of the public in unexpected ways.

I write a lot about how one of the unintended consequences of healthcare is the imposition of increased responsibility on individuals to make decisions and perform tasks that were formerly accomplished by professionals—particularly spelling out what this means for people who are frail and ill and vulnerable.

My colleague's H1N1 decision, however, comes from the other end of the engagement continuum: people who are curious, motivated, and able and who know something about the progress and methods of science. We weigh the available evidence against our personal experiences, values, and preferences and make a choice that may not agree with either our physician's expert recommendation or a population-based public health agenda.

Those like this among us will not limit our consumer investigations to finding the cheapest X-ray for our sprained ankle or the best drug plan for our mom. We will not restrict our demands for shared decision-making with our doctor only to those choices that promise similar outcomes with different side effects. Nope. We have responded to the imprecations that we become informed purchasers of value and ask questions, and we don't believe that any aspect of this service-delivery enterprise of healthcare is off-limits to our scrutiny.

Highly engaged patients demand a new kind of relationship with our physicians—one that requires flexibility, patience, and humility—as we try to understand what is wrong with us and how what they recommend might (but might not) help. We question their sources, experience, and opinions of the latest JAMA article; we judge them based on the quality of their training and publications and ratings of their manners by other patients. And we may or may not follow their advice.

Few among us—patients or clinicians—deny the new reality: Healthcare is changing, as is the public's recognition that we have to be more engaged in our care. The change already challenges all of us: Physicians complain about the Internet articles that their patients want to discuss; patients complain that the doctor won't answer their questions. We have a long way to go before we find new models of interacting that leave all of us feeling like we are working together for the best possible outcome.

In the meantime, however, the stakes are considerable.

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