Enriching the Patient Perspective: Social media and online discussion forums
The Agency for Healthcare Research and Quality (AHRQ) Evidence-Based Practice Center Program’s mission is to synthesize evidence into written reports that help patients and doctors choose treatments that are right for them. Patient input is critical to ensure these reports address issues that matter to patients. However, the combination of time constraints, resource limitations, and government regulations currently limits the team to talking to only 1 or 2 patients.
We explored whether social media, crowdsourcing and existing discussions from on-line forums could be used to reach a more diverse and representative group of patients and caregivers. We first developed a prototype that we pre-tested with patients. We then tested approaches to query patients about their experiences with treatment for non-melanoma skin cancer: (1) Using Twitter to reach a large audience that directed patients to a website where they could provide their comments; (2) Posting a question directly to an existing online patient community; (3) Systematically searching and analyzing content from freely available and publically accessible online discussion forums on non-melanoma skin cancer
Over the course of two weeks, using Twitter reached > 50,000 individuals but resulted in only 2 comments, from patients. Engaging the online community, however, resulted in 26 comments from patients. All the comments received were insightful and useful. The online discussion forums were also a rich source of information, but it was labor intensive to identify, abstract and thematically analyze. Each approach had pros and cons but offered a unique perspective on the range of issues patients face, their biggest concerns and what values they may prioritize when choosing treatment options.