H1N1 Vaccine Debate Shows Engaged Patients Cut Both Ways
Patients going beyond doctors' medical advice will have unintended consequences for the rest of us
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.
- Check out our political cartoons.
- Become a political insider: Subscribe to U.S. News Weekly, our digital magazine.
- Check out our editorial cartoons on healthcare.
Reader Comments
Not all doctors recommend the H1N1 vaccine
Our doctor welcomed our questions and concerns...
My daughter has Cystic Fibrosis. Her doctor says that she should NEVER get a "live, attenuated" vaccine (especially H1N1), and she should avoid those who do because they are contagious for a period after they receive it.
The "live" FluMist H1N1 vaccine is the ONLY one available in our area; Stanford hospital is waiting for the "dead" vaccine to arrive some time in November.
In the meantime, the "live" vaccine is putting our most vulnerable populations at risk.
Sophomoric Patients
My dad reminded me as a sophomore in college that the origin of the word “sophomore” actually comes from the Greek “sophos”, wisdom, and “more” or “moron”, fool. At age 19 with a year of college academics under my belt, I was indeed the “wise-fool”. In the process of becoming informed we must learn what we don’t know, as much as understand what we do.
This “wise-fool” stage is what I’m afraid the engaged patient will experience. Buoyed first by the heady empowerment of readily available health care information, we devour the content shared online by institutions, professionals and peers. We dig and read until we have the sense that we’ve consumed most of what is available, making us self-educated experts. And then we apply it to ourselves and our families as the in-house medical research librarian. What we lack is the foundation of knowledge accumulated through years of schooling and practice that puts our sliver of expertise into perspective.
Healthcare (gov)
Government 'Healthcare' will surely diminish the individual's incentive to care for his/her own health. The more we hear about government taking over so many things, the more each individual will say "The government will take care of me." All of this power in the government will undermine American individual initiative - even in terms of individual health behaviors.
Does the writer above think that doctors should work for nothing?
Does he also think that Insurance agencies should just give money away - as a hobby?
Lawyers - they, too, need money to live. However, tort reform is needed. Limits are needed on medical liabilities.
advertisement
