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Patient and family engagement in research is critical to truly realize the goals of cooperative health care supported by the Society for Participatory Medicine members and other industry leaders. However, barriers to engagement are evident and frustrating to patients, families, and professionals. For example, in our focus groups with patients around the world, patients repeatedly describe a sense of being on the periphery of the evidence base.

Key barriers exist in the way in which health care knowledge is created and shared in ways that prevent the realization of truly un-siloed, cooperative partnerships between patients, families, and professionals. Rather than engaging consumers, the organization of information alienates them. For example, the titles of the journals and research articles are not organized with consumer-friendly language and naming conventions. Many consumers, particularly those already at risk for health disparities, conceptualize and search for health information in plain language. Instead of cardiology, they search for “heart.” Instead of pulmonary, they look for “lung.”

If consumers do find information they are interested in, they often lack physical access to the published research, which is largely restricted to institutions and professional audiences with paid subscriptions. Jargon-filled writing and complex statistical analyses in journals, which are often biased towards quantitative research, further add to the mystique that only professionals can and should engage with health care research.

Improving physical access to research is just a first step. In our engagement with patients, in settings across the health care continuum, patients conceptualize access to research as more than simply expanding access to scientific journals. Not only do they request full access to research articles, written to promote consumer understanding of the findings, they also ask for direction in how to apply findings in the context of their health care decisions.

Rather than creating an evidence base for or about patients, we should partner with patients and families to create a knowledge base that is understandable, accessible, and supportive of consumers in finding research, evaluating it, and putting it to use. As one patient recently questioned during a focus group, “After all, who is the evidence base being created for?”

Want more ideas on how to overcome barriers to engagement? Check out our article in the December 2016 JACR Special Issue: Patient- and Family-Centered Care.

Harrison J, Frampton S. Patient and Family Engagement in Research in Era 3. J Am Coll Radiol December 2016;13(12 Pt B):1622–1624.