Patient Organizations' Digital Responses to the COVID-19 Pandemic: Scoping Review

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 prompted rapid digital transformation efforts across multiple sectors, including health care.

This study aimed to explore how POs digitally responded to pandemic-related circumstances, focusing on aspects such as the technologies used, positive outcomes, and challenges encountered.

This scoping review followed the methodological guidance of the JBI (Joanna Briggs Institute) Scoping Review Methodology Group and adhered to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) reporting guidelines. A systematic search of PubMed, the Web of Science Core Collection, and the WHO (World Health Organization) COVID-19 database, supplemented by a citation search approach, was conducted. The initial search was performed on November 10, 2022, and updated on November 8, 2023. Publications were eligible if they were published after November 30, 2019, and addressed pandemic-related digitalization efforts of POs, defined as nonprofit organizations with a focus on health-related support. A 2-step screening process was used to identify relevant literature. Data were extracted using a standardized table to capture aspects such as digital adaptation activities (eg, types of technologies implemented, positive outcomes, challenges, and facilitating factors) and coded inductively to identify similarities across included publications, and the findings were synthesized narratively.

The search and its subsequent update yielded 2212 records, with 13 articles included in this review. These articles revealed a range of PO services that were digitally adapted during the pandemic, with videoconferencing software emerging as the most commonly used tool (n=9 articles). The digital adaptation of group-based support activities was the most frequently reported transformation (n=9). Other adaptations included the digitalization of counseling services (n=3) and the delivery of information and education (n=3), including educational workshops, weekly webinars, and the dissemination of information through digital newsletters. While the use of digital formats, particularly for POs' group activities, often increased accessibility by breaking down preexisting barriers (n=5), they also created new barriers for certain groups, such as those lacking digital skills or resources (n=4). Some participants experienced a loss of interpersonal aspects, like a sense of community (n=3). However, further findings suggest that the digital delivery of such group activities preserved essential interpersonal aspects (n=7) and a preference among some participants to continue digital group activities (n=4), suggesting the potential for sustainability of such options post the COVID-19 pandemic.

The rapid digitalization efforts of POs demonstrate their adaptability and the potential of digital technologies to improve support services, despite some challenges. Future digitalization strategies should focus, among other things, on promoting digital literacy to ensure the accessibility and inclusiveness of digital services.

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