JMIR Publications

ABSTRACT

Background:

Social media provides a potential avenue for genetic counselors (GCs) to address gaps in access to reliable genetics information for rare disease communities, but little research has examined patient and family attitudes toward online engagement. Our study assessed the attitudes of members of rare disease social media groups regarding such engagement, characteristics associated with greater interest in engagement, and the benefits and potential pitfalls of various approaches to engaging with GCs through social media.

Objective:

This study used an innovative sampling methodology to obtain a diverse, systematic sample of rare disease social media support groups. We aimed to use this large sample to elicit group members' perspectives on the type of support services that genomics professionals may uniquely be able to provide in an online setting.

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 association with interest in engagement with GCs were evaluated using univariate and bivariate statistics. Open-ended responses were analyzed using thematic content analysis.

Results:

One-thousand and fifty-three individuals from 103 rare disease groups participated. Median overall interest in engaging with GCs on social media was moderately high at 7.0 (IQR=4.0-9.0, range 0-10). No past experience with a GC was associated with greater interest in engaging online (µ=6.5 vs. 6.0, P=0.04). Participants expressed greatest interest (median=9.0, IQR=5.0-10.0) in engagement models allowing direct communication with GCs, including individualized support, but also expressed concerns regarding privacy.

Conclusions:

Patients and family members in rare disease social media groups appear interested in engaging with GCs online, particularly for individualized support. While encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area.