Peer support group leaders provide opportunities for empowerment, education, support, and connection for people seeking health information on social media.
These leaders almost always do this work as unpaid volunteers in order to serve and help their communities.
Without any resources or training to sustain their work, peer support group leaders have become stewards of one of the most important resources in health care. Imagine what they could achieve if these leaders received the support they need and deserve.
Peer Support leaders need support too.
The Light Collective supports moderators of health communities by providing:
Through a series of surveys, interviews, and focused discussions, as well as a literature review, The Light Collective has identified a set of suggested best practices for moderators.
This is an evolving set of guidelines. If you have suggestions for additional best practices or changes to existing ones, we’d love to hear from you!
Evidence of Value of Work
The Light Collective has identified and regularly updates a collection of articles exploring the value and effectiveness of peer support.
For more information on the value of peer support, see: Why Peer Support section and download our Online Peer Groups 101 for Healthcare Providers infographic. Also visit Susannah Fox’ excellent collection of relevant resources.
Training (in Development)
The Light Collective is working on organizing a training program for moderators of online health-related peer support groups. Training initially will be geared toward cancer-related groups.
Core training will include: cybersecurity 101 (keeping your group safe online), facilitation, grief counseling, self-care, mental health emergencies, and subject matter education. For training on subjects like hereditary cancer, TLC will encourage moderators to receive training through existing programs such as FORCE, Project LEAD, and others.
Members Are Saying
“The BRCA Sisterhood was the best, most valuable resource I had to navigate through one of the toughest times of my life. I would be lost without being able to search for certain surgery topics and ask people for input and opinions. Knowledge really is power and this page was the main tool I used to learn about my BRCA condition and my options.”BRCA Sisterhood Member
“Professional, vetted information is extremely important to me and I am grateful to the leader for her engagement of the medical community to provide answers and guidance”BRCA Advanced Member
“This group was an easily accessible lifeline in times of need.”Cancer Support Group Member
“This Facebook group was a godsend. I work 2 jobs so could not find the time to go to one in person. I'm on Facebook daily so this is very convenient for me and has been a satisfying experience”Cancer Support Group Member
The Evidence + Advanced Reading
1.TLC’s Moderation Overview
The Light Collective has developed a document that discusses in more detail the peer support group moderation best practices outlined in our downloadable infographic, and includes information on why group administrators and moderators are so important as well as suggested core competencies and key characteristics for good moderation.
2. Community Tool Box
The Community Tool Box is a public service of the Center for Community Health and Development at the University of Kansas. The Center also provides a variety of services including technical assistance and training and participatory evaluation of community-based efforts.
3. COMING SOON: 2019 Pilot Study from The Light Collective
The Light Collective, with the support of the Robert Wood Johnson Foundation, held discussions with its Community Advisory Board, surveyed 296 members of multiple cancer-focused online groups, and conducted focused interviews with group moderators in order to answer key questions about the use and value of online support groups to members of the cancer community. We anticipate publishing the study results in the fall/winter of 2019//20. Stay tuned!