Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study

Abstract

Background Social media provides a potential avenue for genetic counselors to address gaps in access to reliable genetics information for rare disease communities. However, only limited research has examined patient and family attitudes toward engaging with genetic counselors through social media. Objective Our study assessed the attitudes of members of rare disease social media groups toward engaging with genetic counselors through social media, characteristics associated with greater interest, and the benefits and potential pitfalls of various approaches to such engagement. Methods We conducted a mixed methods survey of patients and family members recruited from a systematic sample of rare disease Facebook groups. Patient characteristics and their associations with interest in engagement with genetic counselors were evaluated using univariate and bivariate statistics. Responses to open-ended questions were analyzed using thematic content analysis. Results In total, 1053 individuals from 103 rare disease groups participated. The median overall interest in engaging with genetic counselors on social media was moderately high at 7.0 (IQR 4.0-9.0, range 0-10). No past experience with a genetic counselor was associated with greater interest in engaging with one through social media (µ=6.5 vs 6.0, P=.04). Participants expressed greatest interest (median 9.0, IQR 5.0-10.0) in engagement models allowing direct communication with genetic counselors, which was corroborated by the majority (n=399, 61.3%) of individuals who responded to open-ended questions explicitly stating their interest in 1-on-1 interactions. When asked what forms of support they would request from genetic counselors through social media, participants desired individualized support and information about how to access services. However, participants also expressed concerns regarding privacy and confidentiality. Conclusions Patients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area.

Social media use by patients with hypermobile Ehlers–Danlos syndrome

“…Previous studies have examined SoMe use among patients with rare disease broadly (Yabumoto et al., 2022 ), among their guardians (Barton et al., 2019 ; DeLuca et al., 2012 ; Deuitch et al., 2021 ), and among rare‐disease researchers and advocates (Morgan & Subbiah, 2023 ; Reason et al., 2021 ; Walker, 2013 ). However, our study is one of the first qualitative studies to explore the role of SoMe in the lives of patients with hEDS (Ashtari & Taylor, 2022 ).…”

“…It explored how they utilized SoMe, their emotional and cognitive responses to such usage, the ways in which SoMe influenced their perceptions and understanding of EDS, its impact on their social lives and advocacy efforts, and their interactions in online support groups and communities. These questions were likewise derived from our literature review and informed by the pre‐survey responses, addressing salient issues highlighted by previous research into SoMe and rare‐disease communities (Koinig & Diehl, 2020 ; Morgan & Subbiah, 2023 ; Yabumoto et al., 2022 ; Zhu et al., 2021 ). The interview guide is available in the Data S2 .…”

“…Faced with a lack of knowledgeable local clinicians or patient communities, individuals with rare diseases are increasingly turning to social media (SoMe) to make use of global networks of care and information (Yabumoto et al., 2022 ). These platforms have the potential to provide informational, social, and medical support for populations that are otherwise too small and dispersed to have such access (Barton et al., 2019 ; Deuitch et al., 2021 ; Van Uden‐Kraan, Drossaert, Taal, Shaw, et al., 2008 ).…”

Stigma associated with genetic testing for rare diseases—causes and recommendations

“…However, there is a substantial unmet need for genetic counseling to support pretest decision making and post-test counseling ( Dwyer et al, 2022 ). Furthermore, a survey evaluating the opinion of the members of RD social media groups on engaging with genetic counselors through social media found that PLWRDs and their family members were interested in connecting with genetic counselors through these platforms ( Yabumoto et al, 2022 ).…”

Whither social media and clinical genetics?

“…Social media offers many benefits and advantages to practitioners and researchers. In addition to being a tool for general information gathering about the field and for learning about how genetic conditions affect people (Kelleher et al, 2015), online social media platforms have become essential elements of recruiting participants to genetic studies (Coffin et al, 2022; Glayzer et al, 2021; Reaves & Bianchi, 2013; Vlaskamp et al, 2019), forming support groups (Krabbenborg et al, 2016), surveying health care professionals regarding genetic evaluations and practices (van den Heuvel et al, 2021), understanding family communication about genetic information (Leighton et al, 2021), and enabling patient engagement with genetic counselors (Yabumoto et al, 2022), among many applications. In fact, as many genetic conditions are individually rare (Ferreira, 2019), social media offers unique and often rewarding ways to bring geographically far‐flung patients, families, clinicians, and researchers together.…”