Interventions to reduce cancer screening inequities: the perspective and role of patients, advocacy groups, and empowerment organizations.

BACKGROUND: Health inequities lead to low rates of cancer screening in certain populations, such as low-income and ethnic minority groups. Different interventions to address this have been developed with mixed results. However, interventions are not always developed in collaboration with the people they target. The aim of our article is to present the viewpoint of patients, survivors, advocates, and lay persons on interventions to increase cancer screening from a health inequity perspective. METHODS: We prepared talking points to guide discussions between coauthors, who included representatives from nine patient and survivor advocacy groups, organizations working for citizen/patient empowerment, and health equity experts. Perspectives and opinions were first collected through video conferencing meetings and a first draft of the paper was prepared. All authors, read through, revised, and discussed the contents to reach an agreement on the final perspectives to be presented. RESULTS: Several themes were identified: it is important to not view screening as a discrete event; barriers underlying an individual's access and willingness to undergo screening span across a continuum; individually tailored interventions are likely to be more effective than a one-size fits-all approach because they may better accommodate the person's personal beliefs, knowledge, behaviors, and preferences; targeting people who are unknown to medical services and largely unreachable is a major challenge; including professional patient advocacy groups and relevant lay persons in the cocreation of interventions at all stages of design, implementation, and evaluation is essential along with relevant stakeholders (healthcare professionals, researchers, local government and community organizations etc). CONCLUSIONS: Interventions to address cancer screening inequity currently do not adequately solve the issue, especially from the viewpoint of patients, survivors, and lay persons. Several core pathways should be focused on when designing and implementing interventions: advancing individually tailored interventions; digital tools and social media; peer-based approaches; empowerment; addressing policy and system barriers; better design of interventions; and collaboration, including the involvement of patients and patient advocacy organizations.

Pull Up a Seat: Engaging Patients as Empowered Partners in Health Equity Transformation.

At the JADPRO Live Virtual 2021 keynote interview, Maimah Karmo, CEO and Founder of the Tigerlily Foundation, spoke with Amy Pierre, MSN, ANP-BC, on her breast cancer experience and drive to establish an organization that educates, advocates for, and empowers young women of color at every stage of their breast cancer journey. Ms. Karmo and Ms. Pierre also discussed the role of the advanced practitioner in furthering patient-centered, equitable care.

Social Media and the Quest for Equity and Diversity in Oncology: On Safe Spaces and the Concept of the Public Physician.

Despite their increased enrollment into medical school, women still face systemic barriers in medicine, whether in an academic or nonacademic setting. Those from Under-Represented Minority (URM) groups face similar issues, which may affect their desire to enter, pursue, and/or maintain a career in medicine. Social media provides unique opportunities for peer-to-peer support among members of URM communities and for amplification of their voices calling for social justice-here defined as a redistribution of power and the quest for equity in access to opportunities, including access to mentorship, professional development, and timely promotion in academic rank. These issues are relevant to oncologists especially as we strive for diversity, equity, and inclusion and to ensure that our patients have equal access to care, regardless of their circumstances. In this article, we review current literature that highlights issues faced by women and historically URM groups in medicine, particularly in oncology. We also discuss the physician's role as a social justice advocate and the concept of the public physician.

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator.

PURPOSE: Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to become experts in their cancer. This combination of empowerment and expertise describes the new "e-patients." METHODS: We reviewed the literature to identify key areas where expert e-patients have directly participated in advancing cancer medicine, as well as opportunities available to those who wish to become more involved in research advocacy. RESULTS: E-patients are widely acknowledged as key stakeholders in oncology by clinicians, researchers, cancer centers, government agencies, and nonprofits. Their input is vital for informing cancer care delivery, developing and launching research initiatives, creating care guidelines and pathways, and formulating policy. CONCLUSION: Expert e-patients play an expanded role in their own care and in larger conversations regarding practice, research, and policy. Clinicians can engage e-patients as partners in cancer care as we work together towards improving health care access and outcomes for people with cancer.