The findings, based on a survey of 1,500 registered voters, should be encouraging to policymakers, particularly in view of the broader public ambivalence on health care. When presented with a comparative effectiveness research institute that provides useful clinical information to doctors and patients (similar to the institute created by Congress in the Affordable Care Act), 54 percent of respondents expressed support, compared with 32 percent opposed. This support contrasts with the public’s drop in confidence in the U.S. medical system, which fell to 35 percent in a recent Gallup poll.
Survey findings suggest that, to the extent PCORI remains true to the mission and structure created by Congress, it will enjoy continued support.
Central to this mission is doing research on the questions that matter to patients, engaging patients and physicians in their decision-making and communicating research findings in a way that helps doctors and patients make good health care decisions.
Equally important, the survey shows, is ensuring the institute’s findings are not misused to promote “one size fits all” treatment standards or restrict patient access to treatment options.
The survey also shows that people want information that is accurate, transparent and presented in a manner they can understand. This underscores the importance of PCORI’s current work related to dissemination of research findings. As the ultimate consumers of PCORI’s work, patients and clinical experts should be partners with PCORI as they develop protocols for communicating research findings in a manner that people find useful in their decision-making. Getting the study question right is only the first step in the research process.
Ultimately, PCORI will be judged on how that information is communicated and disseminated in a manner that addresses how it is relevant to people like me, so that I can discern what treatment may be best for me. That means patients and clinical experts must be involved at every step of the research process so the outcome is credible and understandable. A person looking at the information must be able to easily assess whether it is useful to them as a woman or man, as an African-American or Hispanic person or as a person with a disability — and whether it meets their personal preferences and needs related to their quality of life, their need to go to a job, to be a parent, etc.
Our surveys have consistently shown, as have others, that people oppose the use of information to limit their treatment options through limited coverage. While we all want to manage health care costs, as Americans we also want access to the best treatment available based on our personal characteristics.
As chairman of PIPC and an epilepsy patient myself, I can appreciate why people are concerned about how information may be misused to limit their treatment options. I use a specific drug that effectively manages my epilepsy. It probably would not be considered the most cost effective, or even the most clinically effective for the average patient — but I am not the average patient.
PCORI has had a tough road to overcome a cultural, institutionalized bias relying on researchers to drive the research agenda in health care. Although PCORI initially adopted a funding process similar to other federal agencies, it is a significant step in the right direction that PCORI is shifting research funding toward topics that are driven by patients and clinical experts through advisory panels and by convening stakeholders in roundtables. This is the kind of research that patients and providers are most likely to use, if communicated effectively.
PIPC’s members, including a variety of patient and provider stakeholders, will continue working to support development of high-quality, patient-centered CER by PCORI. In the year ahead, PIPC looks forward to engaging with PCORI on its plans to better communicate research findings to doctors and providers, in a manner that is perceived as valuable to their health care decision-making, as opposed to being implemented in a manner that limits their choices.