Translational Breast Cancer Research Consortium (TBCRC) Patient Advocate Working Group (PAWG): An approach to research advocacy.

Connectors, Translators, Facilitators: Research Advocacy Today

“…As core members of the TBCRC, the advocates work with researchers to develop and implement biologically driven translational and clinical research. 3,4 The Metastatic Breast Cancer Network asked an advocate from the Breast Committee of ECOG (now combined with the American College of Radiology Imaging Network to become the ECOG-ACRIN Cancer Research Group) why some patients with metastatic breast cancer live longer than the average of 2 to 3 years after diagnosis. When the advocate brought the question forward, ECOG conducted a retrospective study of 12 phase III adjuvant breast trials, looking at survival after first recurrence with metastatic disease and identifying patient subsets who had survived 5 and 10 years.…”

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

“…In several therapeutic areas such as oncology, 9 , 51 neurology, 36 and infectious diseases (HIV in particular 46 ), the need to incorporate patients as partners in research is already recognized, 64 , 94 and studies have been conducted to try to quantify the value of patient partner engagement in the added benefit, primarily with regard to time and money saved. 112 , 123 , 163 , 166 , 171 Although guidance exists on patient engagement as partners in research in these fields, 9 , 33 , 36 , 44 , 46 , 48 , 51 , 68 , 73 , 82 , 94 , 96 , 105 , 112 efforts to engage patients in pain research have not been well-orchestrated, and no current recommendations exist on how to most meaningfully engage patients as true partners in pain research. Although many of patient engagement practices are transferable across disciplines, pain research could benefit from specific guidance for several key reasons: (1) pain is a subjective experience, and considering individual voices can help us understand heterogeneity and similarities of experiences; (2) patient-centered outcomes and endpoints are particularly important because no objective biological markers for pain exist and clinical studies rely on patient self-report and patient-reported outcomes; (3) the gap between evidence and uptake in routine clinical care could be a function of limited consideration of patient preferences and perceived barriers to accessing pain care, among others; and (4) translational efforts for the development of new therapeutics have had very low success rates.…”