International AIDS Conference 11-Early (1992) conference that included patients and provided initial evidence that physicians valued patient participation as a means to improve discussion of ethical and policy issues related to healthcare 12 13 14 15 These findings suggest that patient participation is most important in conferences involving research and policy decisions but, as box 1 shows, it can provide meaningful insights at other types of medical conferences, such as those with a clinical, quality improvement, or leadership and management focus.īox 1: Examples of medical conferences that have included patients Such studies show that including patients widens the focus of research, changes the culture of conferences and researchers to use more patient relevant outcomes in clinical trials, and leads to wider patient involvement as partners in research. 12 The available evidence includes qualitative semistructured interviews and thematic content analysis of publications and conference proceedings. However, progress since then has been slow, and there is little research into patient engagement. The eighth international AIDS conference in 1992 11 was one of the first to integrate patient participation. Patients can make important contributions in all of these areas by helping everyone understand the problems that matter most to patients, caregivers, and their families. Medical conferences are convened to spark innovation in healthcare by creating networks of experts, sharing knowledge, forming collaborations, and thoughtful challenging of conventional thinking. We define medical conferences to include any meeting where health care issues are discussed for the purpose of educating, evaluating or improving medical care. 9 We describe the benefits of patient partnership in academic medical conferences and how it can be enabled.

8 Despite this progress, the role of patients in academic medical conferences has been poorly defined, discussed, and implemented. The Patient-Centered Outcomes Research Institute (PCORI) and other bodies were created to help fund these studies and implement the findings. 7 Patients are also involved in medical research, including using patient centred outcomes in comparative effectiveness research. 5 6 In the US, the Patient Protection and Affordable Care Act has stipulated inclusion of patient centred outcomes on the quality and experience of care, including public reporting and performance payments related to this aim. Patient involvement in health policy, clinical care, and research has gained momentum in recent years.

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