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Journal of Patient-Centered Research and Reviews

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Full-Text Articles in Medicine and Health Sciences

Perspectives Of People With Cancer Or Hereditary Cancer Risk On The Use And Value Of Online Peer Support, Jill Holdren, Karl Surkan, Andrea Downing Apr 2023

Perspectives Of People With Cancer Or Hereditary Cancer Risk On The Use And Value Of Online Peer Support, Jill Holdren, Karl Surkan, Andrea Downing

Journal of Patient-Centered Research and Reviews

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 …


A History Of #Bcsm And Insights For Patient-Centered Online Interaction And Engagement, Matthew S. Katz, Alicia C. Staley, Deanna J. Attai Oct 2020

A History Of #Bcsm And Insights For Patient-Centered Online Interaction And Engagement, Matthew S. Katz, Alicia C. Staley, Deanna J. Attai

Journal of Patient-Centered Research and Reviews

Purpose: Participation in cancer support groups can provide a sense of community and may better prepare patients for interactions with their health care team. Online interactions may overcome some barriers to in-person support group participation. #BCSM (breast cancer social media), the first cancer support community established on Twitter, was founded in 2011 by two breast cancer survivors. The aims of this study are to describe the growth and changes in this community and to discuss future directions and lessons that may apply to other online support communities.

Methods: Symplur Signals was used to obtain all #BCSM Twitter data from January …