Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability.
Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships.



Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families.



The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members.



The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group.



The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.|School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
Dianne J
0000-0001-7486-4643
DJ
Russell
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Jennifer
0000-0003-2565-8039
J
Sprung
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Dayle
0000-0003-3863-7229
D
McCauley
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.|Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Olaf
0000-0002-7927-7189
O
Kraus de Camargo
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Francine
0000-0002-6579-2489
F
Buchanan
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Roman
0000-0001-5720-5558
R
Gulko
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Rachel
0000-0002-2716-6495
R
Martens
CanChild Center for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.|Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Jan Willem
0000-0002-3012-2119
JW
Gorter
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D006233:Persons with Disabilities / Q000193:education*; D005260:Female; D058015:Health Communication / Q000379:methods*; D006801:Humans; D020407:Internet; D019359:Knowledge; D008297:Male; D010290:Parents; D061108:Social Media; D011795:Surveys and Questionnaires; D055815:Young Adult
Facebook; Web-based community; childhood disability; collaborative research; knowledge exchange; patient and public involvement(PPI); research engagement; scientific collaboration; social media