Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review.

Background: Patient and public involvement in health research is important to produce relevant and impactful results.

Objective: This paper aimed to prioritize and summarize Hirschsprung disease (HD)-related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign.

Methods: We conducted a Web-based survey with the 2 stakeholder groups to identify information needs.

Analysis of a parent-initiated social media campaign for Hirschsprung's disease.

Background: Social media can be particularly useful for patients or families affected by rare conditions by allowing individuals to form online communities across the world.

Objective: Our aim in this study was to conduct a descriptive and quantitative analysis of the use of a social media community for Hirschsprung's Disease (HD).

Methods: In July 2011, a mother of a child with HD launched the "Shit Happens" campaign.