OBJECTIVES

Numerous studies have examined the content of online patient communities (OPC) for patient attitudes, treatment discussions, and therapy outcomes. This study aims to assess the impact of OPC on patient outcomes by systematically reviewing the available literature.

METHODS

In accordance with the PRISMA guideline of systematic reviews, databases (Medline, Embase, Scopus, and Cochrane Library) were queried using the search terms “online patient community”, “online health community”, and “online health” + “community”. Inclusion criteria were as follows: (1) published in a peer-reviewed journal with full text in English between 2008-2017, (2) included OPC as an intervention or exposure, (3) consisted of adult patients, and (4) captured at least one patient outcome. Studies that assessed weight loss or smoking cessation as an outcome and used social media sites (e.g., Facebook) as an OPC were excluded. At each step, abstracts and full-text articles were evaluated by at least two independent reviewers. Query results were compiled using RefWorks.

RESULTS

Of the 420 studies queried from databases, 11 met all predefined criteria. Studies were conducted in the United States (64%), Europe (18%), and Asia (18%). The patient communities varied by disease state covered such as epilepsy (18%), asthma (9%), COPD (9%), and other chronic conditions. Study designs included randomized controlled trials (45%), non-randomized controlled trials (9%), and observational studies (45%). The most common method of measuring patient outcomes was through survey (91%) vs other objective measures. An improvement in patient outcomes was found in 73% of studies.

CONCLUSIONS

Although most studies assessing the impact of OPC showed a beneficial result and studied populations with chronic conditions, it is difficult to further characterize populations that would benefit from OPC due to the lack of consistency among outcomes measured. Further research is warranted to identify the diverse patient populations that may be positively impacted by OPC.