Identifying Facilitators and Barriers to Patient Advocacy for Women's Cancers: Findings from Eastern Europe/Central Asia WE CAN Summits

Abstract

Purpose Patient advocacy plays an important role in alerting policymakers to the public’s concerns about women's cancers and advancing cancer awareness, early diagnosis and care in high-income countries. Patient advocacy for women's cancers is growing in low- and middle-income countries (LMICs) but remains less developed and understudied. This study aimed to describe facilitators and barriers to advocacy from the point of view of advocates for women's cancers participating in Eastern Europe/Central Asia Women's Empowerment Cancer Advocacy Network (WE CAN) Summits. Methods We conducted semistructured, in-depth interviews and focus group discussions with participants representing cancer advocacy organizations from 14 countries attending the 7th Eastern Europe and Central Asia Women’s Empowerment Cancer Advocacy Network (WE CAN) Breast and Cervical Cancer Advocacy Summit held in Romania in 2015. Discussions and interviews were recorded and transcriptions were coded and analyzed. Findings were presented and discussed at the 8th WE CAN EE/CA Summit in Ukraine in 2017. Results Nine in-depth interviews and three focus groups with a total of 36 participants were conducted. Challenges to advocacy included limited collaboration with the medical community, government, and local authorities; a lack of trust between survivors, physicians, and policymakers; difficulty in adapting existing early diagnosis and treatment recommendations to local context and resources; limited organizational professionalism and program monitoring; societal stigma toward cancer; and limited funding. Key facilitators included highly committed staff and volunteers, effective collaboration, and use of social media for networking and to obtain clinical information. Conclusion Our findings highlight the challenges and facilitators of patient advocacy in the Eastern Europe/Central Asia region, involving patient support groups, advocacy organizations, health care systems, policymaking, and societal attitudes and cancer awareness. To advance patient advocacy for women's cancers in the region, the following needs were identified: the dissemination of resourceadapted information for improving patient outcomes, improved program monitoring, and improved dialogue between survivors, medical professionals, and local governments. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . Julie Gralow Consulting or Advisory Role: Puma, Novartis, Genentech/Roche, Pfizer, Merck, Sandoz, Astra Zeneca, Immunomedics Darya Kizub Employment: Everett Clinic Jo Anne Zujewski Employment: Leidos (part time as an independent contractor for Leidos in support of NCI Center for Global Health) Consulting or Advisory Role: performed consulting services for PMK biomedical and BeyondSpring Pharmaceutical