Engage: Blog

Kristin Carman | Apr 2016 | 0 COMMENT(S)

When we’re sick or someone we love is sick, it’s only human nature to think only about our own needs. Good policy making, however, requires an “n” bigger than one and public perspectives that balance individual wants with broader societal needs.

But the inherently emotional and personal nature—not to mention the complexity—of health care makes it difficult for policymakers to get informed, thoughtful and constructive public input on controversial health policy issues.

American Institutes for Research (AIR) researchers have found that an innovative approach—known as public deliberation—is effective in gathering informed public input on complex issues like the role of medical evidence in treatment decisions. Unlike surveys and focus groups that collect top-of-mind views, deliberation encourages people to learn about an issue and consider alternative—often competing—perspectives. Deliberation has three main pieces:

  • Educating people in a neutral, objective way;
  • Considering all sides of an issue; and
  • Encouraging people to keep broader societal concerns in mind along with their individual points of view.

Building on previous research on public deliberation, a new Health Affairs article by AIR researchers, titled “Understanding an Informed Public’s Views on the Role of Evidence in Making Health Care Decisions,” explores how public deliberation can increase public understanding of medical evidence and advance acceptance of evidence-based care.

While people overwhelmingly believe medical evidence is key to high-quality care, they struggle with understanding what constitutes clear medical evidence—often at first equating evidence with a doctor’s accumulated experience and clinical judgment rather than clinical research results, according to the study. The public is also deeply skeptical of limiting patient choice and physician autonomy in individual cases regardless of the evidence, believing clinicians, as experts with specialized education and knowledge of the individual patient, should be free to depart from guidelines or evidence for individual situations. 

However, when given the opportunity to learn about and discuss medical evidence through public deliberation, their views can shift toward giving more weight to medical evidence and less to patient preferences, the study found. For example, when study participants learned about and discussed the threats of antibiotic resistance to individuals and the larger community when antibiotics are misused—to treat a viral infection like a cold, for instance—they were more willing to limit patient choice and physician autonomy.

Deliberation significantly altered participants’ views about patients’ right to get any treatment they prefer, with the proportion disagreeing or strongly disagreeing that “people should be able to get a medical treatment they prefer, even if medical research results show it won’t work for them” increasing from 42 percent to 51 percent after deliberation.

Nonetheless, a striking minority—about 1 in 4 people—continued to believe after deliberation that physicians should have unfettered freedom to provide treatments that research shows won’t work, the study found. Notably, however, people do not necessarily believe others should have to pay for such treatments.

The study was conducted through the Community Forum on Deliberative Methods Demonstration funded by the Agency for Healthcare Research and Quality.  AIR convened 76 public deliberation groups with 907 total participants in four communities in 2012: Chicago; Sacramento, Calif.; Silver Spring, Md.; and Durham, N.C. The participants all considered the same issue: “Should individual patients and/or their doctors be able to make any health decisions no matter what the evidence of medical effectiveness shows, or should society ever specify some boundaries for these decisions?” Participants completed a survey before and after the deliberative sessions to gauge their attitudes about the importance of evidence and choice in treatment decisions—907 people completed the pre-deliberation survey, while 883 completed the post-survey.

Other key findings from the study include:

  • In both the pre- and post-deliberation surveys, more than 90 percent of respondents reported that medical research results were important or very important when making care decisions with their doctor. However, during deliberative sessions, participants emphasized that evidence of what works for most people may not apply to individual patients.
  • Participants expected clinicians to know and generally follow evidence-based guidelines and viewed doctors as central figures in discussing evidence with patients and key arbiters of whether to follow evidence in individual cases. They also found evidence of harm to individuals or the community to be more compelling than evidence of effectiveness.
  • The proportion agreeing or strongly agreeing that doctors should be able to provide a treatment when research shows it “might not” work for the patient changed only slightly after deliberation, from 60 percent to 59 percent.
  • In light of differing financial interests, many participants were skeptical that purchasers, payers, and providers would prioritize evidence of medical effectiveness in care decisions. Many comments reflected beliefs that better care costs more and that restrictions on care—even if based on medical evidence—would limit access to better, more expensive care.

Overall, the findings indicate that increased public understanding of medical evidence can play an important role in advancing evidence-based care, but policy makers need to understand and consider the public’s needs and values to craft workable policies.

Kristin Carman

Formerly at AIR, Kristin is now the Director of Public and Patient Engagement at the Patient-Centered Outcomes Research Institute. She is a nationally known expert and pioneer in the field of patient and family engagement, leading development of the groundbreaking Patient and Family Engagement...

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