Patient Organizations’ Digital Responses to the COVID-19 Pandemic: Scoping Review (Preprint)

Abstract

BACKGROUND Patient organizations (POs) play a crucial role in supporting individuals with health conditions. Their activities range from counseling to support groups to advocacy. The COVID-19 pandemic and its related public health measures have prompted rapid digital transformation efforts across multiple sectors, including healthcare. OBJECTIVE The objective of this scoping review was to explore how POs digitally adapted to the pandemic-related circumstances, focusing on aspects such as the technologies used, positive outcomes, and challenges encountered. METHODS This scoping review followed the JBI Scoping Review Methodology and adhered to the PRISMA-ScR reporting guidelines. A systematic search of PubMed, the Web of Science Core Collection, and the WHO COVID-19 database, supplemented by a citation search approach, was conducted. Publications were eligible if they addressed pandemic-related digitalization efforts of POs, defined as nonprofit organizations with a focus on health-related support. A two-step screening process was used to identify relevant literature. RESULTS The search and its subsequent update yielded 2,212 records, with a total of 13 articles included in this review. These articles revealed a range of PO services that were digitally adapted during the pandemic, with group-based support activities, including support groups, most commonly reported (n=9). While digital formats often increased accessibility and broke down pre-existing barriers, they also created new challenges, particularly for individuals who lacked digital skills or resources. Further findings suggest that online delivery of group activities preserved essential interpersonal aspects, as well as a preference among some participants to continue digital group activities, suggesting the potential for sustainability of digital options. CONCLUSIONS The rapid digitalization efforts of POs during the pandemic highlight their adaptability and the potential of digital technologies to improve support services. Future digitalization strategies should focus, among other things, on promoting digital literacy to ensure accessibility and inclusiveness of digital services. However, the long-term sustainability of these adaptations and their impact on POs remain areas for further research.