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

Abstract

BackgroundEfforts 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.ObjectiveOur 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.MethodsThe 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.ResultsThe 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.ConclusionsThe 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.

Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics‐Based Communities

“…The CanChild Centre for Childhood Research evaluated the success of a private Facebook group designed to connect parents of children with disabilities with researchers. They reported that parents appreciated the sense of community from the group but Bwanted more researcher participationî n the group (Russell, et al, 2016) clinical trials relevant to rare disease communities are often accessible only through research, and researcher participation might allow patients and their families to remain up to date about interventions or treatment opportunities or advance understanding of disease for the entire medical community. Including researchers and/or clinicians as members of a rare disease group might be seen as an additional opportunity to access to information, medical advice, or research that otherwise might not have been available.…”

Communicating Science in the Digital and Social Media Ecosystem: Scoping Review and Typology of Strategies Used by Health Scientists

“…Types of publications were varied; we included primary research articles (4/18, 21%), conference proceedings (4/18, 21%), primary research abstracts (2/18, 11%), reports (2/18, 11%), discussion papers (2/18, 11%), an editorial (1/18, 5%), a review (1/18, 5%), a scientific poster (1/18, 5%), and a quality improvement paper (1/18, 5%). The aims of publications were also varied: 7 discussed the benefits and implications of using social media for communicating science to the public [21-26]; 3 studies aimed to develop, test, and disseminate lay summaries of evidence [27-29]; 2 publications aimed to discuss various prospects, priorities, and strategies for improving SC with the public [4,10]; 1 publication summarized articles regarding prospects for SC in the Web 2.0. era [30]; 1 publication presented international SC experiences [31]; 1 publication aimed to provide guidance on how to identify the public’s information needs and conduct deliberative SC [32]; 1 publication advocated for adopting a community-partnered participatory research approach to SC [33]; 1 publication aimed to develop and evaluate a Web-based research advisory community [34]; and 1 publication aimed to explore the concept of science literacy in relation to SC [35]. We also identified the type of SC described in each publication according to the classification of Palmer and Schibeci [17].…”

Facilitators and barriers to the training and maintenance of young persons’ advisory groups (YPAGs)

“…The iCAN and other platforms that serve to highlight the voices of children and youth in paediatric medicine has increased over the last decade [ 8 , 14 , 15 ]. Patient-oriented research initiatives such as the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (CIHR SPOR) [ 16 ] have contributed in part to the increased involvement of this demographic [ 17 ].…”