ABSTRACT
Purpose: People with cancer routinely seek information and support in peer groups online. While peer communities constitute a major component of the health care landscape, they exist in isolation from clinical and research institutions. This study aimed to explore how and why cancer patients utilize online peer support groups and how they might be improved. Methods: A convenience sample of members of 6 closed Facebook cancer peer support groups (n=291) participated in an online needs assessment survey. We further conducted semi-structured interviews with 14 members and 6 moderator-patients, hand-coding the free-text responses and interview transcripts. Results: Group participation was largely motivated by the desire to exchange information (79%) and to connect with others sharing the same condition (76%). Among study participants, 40% indicated they did not get information or support from any other online or offline organizations, 60% indicated they had few concerns with Facebook peer support groups, 84% indicated it was at least somewhat important that their health information and posts remain private, and 75% desired more input from experts in order to access evidence-based information and curb misinformation. About half wanted more group moderation, and moderators themselves expressed an urgent need for training and support. Conclusions: While online peer groups are a commonly utilized care component for many people with cancer or hereditary cancer risk and serve as a primary source of condition information, many participants desired more expert involvement in and moderation of groups. Privacy and security of health information was another key need expressed.
ABSTRACT
The All of Us Research Program (All of Us) is a national effort to accelerate health research by exploring the relationship between lifestyle, environment, and genetics. It is set to become one of the largest research efforts in U.S. history, aiming to build a national resource of data from at least one million participants. All of Us aims to address the need for more diversity in research and set the stage for that diversity to be leveraged in precision medicine research to come. This paper describes how the program assessed demographic characteristics of participants who have enrolled in other U.S. biomedical research cohorts to better understand which groups are traditionally represented or underrepresented in biomedical research. We 1) reviewed the enrollment characteristics of national cohort studies like All of Us, and 2) surveyed the literature, focusing on key diversity categories essential to the program's enrollment aims. Based on these efforts, All of Us emphasizes enrollment of racial and ethnic minorities, and has formally designated the following additional groups as historically underrepresented: individuals-with inadequate access to medical care; under the age of 18 or over 65; with an annual household income at or below 200% of the federal poverty level; who have a cognitive or physical disability; have less than a high school education or equivalent; are intersex; identify as a sexual or gender minority; or live in rural or non-metropolitan areas. Research accounting for wider demographic variability is critical. Only by ensuring diversity and by addressing the very barriers that limit it, can we position All of Us to better understand and tackle health disparities.
