This scoping review is based on the methodological guidance developed by the JBI (Joanna Briggs Institute) Scoping Review Methodology Group [22]. For reporting, we adhered to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines [23]. The completed PRISMA-ScR checklist is provided in Multimedia Appendix 1.

A protocol was developed and registered with the Open Science Framework before the conduct of this review [24]. Given the iterative nature of scoping reviews, deviations from the initial protocol are generally possible [22,25]. All deviations are documented in the Multimedia Appendix 2 for transparency and justification.

We established a set of specific criteria to systematically identify eligible articles among our search results (Table 1). To be included, an article had to meet all of the criteria, which we divided into 2 main types, formal aspects (criteria 1 to 5) and content-related aspects (criteria 6 and 7).

Regarding the latter, they correspond to the “Concept” and “Context” elements of our research question, derived from the Population, Concept, and Context (PCC) framework, which is often used to construct the title and main research questions of a scoping review [22,25] (Multimedia Appendix 3). Accordingly, articles were considered eligible if they addressed digitalization efforts initiated by POs during and in response to the COVID-19 pandemic. We defined digitalization efforts as the adoption, development, or use of digital technologies for activities previously conducted in person, or as the scaling up of existing digital services. To ensure a comprehensive overview, we considered the structural and functional variations of POs when defining our inclusion criteria. We defined POs by 2 main characteristics, first, their commitment to supporting individuals affected by specific health conditions. This may include direct support, like counseling or peer support, as well as indirect support, such as advocacy or research funding. Articles that addressed the digitalization of peer support groups were also included if such groups were associated with a PO. The second defining characteristic was their nonprofit nature, which is predominant in this sector.

We deliberately chose this broader definition, which aligns with the common characteristics outlined in the introduction, to account for the diverse international landscape of POs while ensuring a cohesive and comparable data set to analyze their digital responses to the pandemic. We intentionally excluded for-profit organizations, as their different operational and financial structures would complicate meaningful comparisons with nonprofits. This distinction ensures methodological consistency and precision in our analysis while recognizing the diversity of these organizations.

Regarding the former (formal inclusion criteria), these included article type, date, and language. We used these criteria to establish a consistent, transparent, and reproducible selection process. Acknowledging that the scope of published literature has not been previously summarized, we adopted a broad approach for certain criteria to ensure comprehensive coverage. For instance, we did not impose limitations on the type of article or study design.

To ensure that our systematic literature search was comprehensive, we selected the bibliographic databases PubMed, Web of Science Core Collection, and the WHO (World Health Organization) COVID-19 Research Database as sources of information. The search strategy was primarily developed by SW, who relies on specialized training and extensive experience in developing search strategies and conducting systematic searches gained through a previous professional position. It was first developed for PubMed and then adapted for the other databases. It consists of 3 thematic search blocks, each containing different synonymous free-text terms and, if available in the databases, corresponding controlled vocabulary terms, that consist of (1) patient organizations, (2) digitalization and digital technologies, and (3) the COVID-19 pandemic. The creation of the third search block was based on PubMed’s general COVID-19 article filter “LitCovid” [26]. Where possible, a publication language restriction was included in the search strings (refer to Multimedia Appendix 3 for the search strings). Quality assurance of the search strategy was performed by the other authors to ensure its robustness and comprehensiveness. The initial search was performed on November 10, 2022, and updated on November 8, 2023. Citavi 6 (Swiss Academic Software GmbH) was used for literature management. To further increase the comprehensiveness of our search and to identify additional eligible articles, a citation search was conducted.

During the initial stage of our selection process, we used Citavi’s duplicate detection feature. Each potential duplicate was thoroughly reviewed by SW using criteria such as title, author, DOI, and journal. Only confirmed exact duplicates were removed, to ensure the integrity of the data set. To then systematically identify all relevant articles, we adopted a 2-step selection process. First, SW and CJ independently screened the titles and abstracts of all articles to determine eligibility based on our inclusion criteria (Table 1). When both reviewers considered an article potentially eligible, it was forwarded to full-text screening for further evaluation. Those that did not meet the eligibility criteria were excluded, with the first unmet criterion noted as the reason for exclusion. Conflicting assessments were discussed. If a consensus could not be reached, the article was also forwarded to full-text screening. Full texts of all preselected articles were then obtained and independently reviewed by SW and JL for final inclusion according to our inclusion criteria (Table 1). Conflicting assessments were discussed to reach a consensus. We did not need to involve a third independent reviewer in the selection process, as all conflicts were resolved at this stage. The screening process during the search update was also carried out using the 2-stage selection approach and was performed by SW and JL. We used Rayyan (Rayyan Systems Inc), a web-based software application designed to facilitate literature screening in systematic reviews, to conduct the selection process for both the initial and the update searches. The citation search was also performed independently by 2 reviewers (SW and CJ). It involved screening the reference lists of the included articles and searching Google Scholar for articles that cited them. The 2-step selection process was followed. The citation search approach was also applied to articles identified during the update of the systematic search, which was conducted by SW and JL.

A critical appraisal of the methodological quality of the included articles was not performed. This is in line with the standard approach for scoping reviews to provide an overview of the existing sources of evidence on a particular topic, regardless of their methodological quality [25].

To extract the relevant data from each included article, we developed a standardized table aligned with the PCC elements of our primary research question and subquestions. The extracted data included bibliographic information (eg, first author, title, and year of publication), methodological information (eg, study design and methodological approach), information on the POs (eg, type of entity, its specific health condition, and group represented), information on the digital adaptation activities (eg, types of digital technologies implemented, positive outcomes and facilitating factors identified, and challenges encountered).

Given the potential diversity in reporting styles, measures, and depth, and to maintain transparency and coherence, we focused our extraction on information explicitly linked to digital adaptation activities. This included aspects like the transformation of in-person services, members’ experiences with online support group activities, or the expansion of existing digital services. If a link to such efforts was not clearly identifiable, we excluded that information from the data extraction. For example, a study reporting a lack of funding as a major challenge for POs during the pandemic was not included unless the challenge was explicitly related to funding for such digitalization measures. To ensure consistency and accuracy, SW and JL collaboratively extracted the data, with each handling half of the included articles. The data was initially extracted verbatim so as not to miss important details. This approach included a range of data, from concise statements to entire paragraphs. Subsequently, the extracted information was condensed to distill the main points and to facilitate focused analysis.

After condensing the textual data, we proceeded with inductive coding. Thematic codes were assigned to the condensed data to reflect the primary information reported. These codes were then organized into broader categories. Whenever possible, these codes, as well as the corresponding broader categories, were applied across the data of all included articles, to allow for a structured and comprehensive analysis.

In the narrative synthesis of the data, which forms the core of our results section, we aimed to highlight similarities and differences among the included articles and to describe potential trends using a slightly quantitative approach by presenting the frequency of reporting (eg, regarding the digital technologies used or the services that had been digitally transformed).

To achieve this, we first summarized the characteristics of the included articles, followed by information on the POs highlighting key aspects and variations. The reported characteristics of the digital adaptation efforts were then synthesized, with a focus on identifying and describing common trends and approaches.

The systematic search of bibliographic databases, along with its update, yielded a total of 2212 results after the removal of duplicates. Of these, 10 references met the eligibility criteria and were included in our review. The citation search yielded 3 additional eligible references. Thus, after the completion of all screening steps, 13 articles were finally included. Figure 1 displays the selection process during the initial search using a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram [27]. The search update is shown in Figure 2.

Of the 13 included references, 9 were original research articles. Of these, most were empirical studies employing a qualitative (n=4) or mixed methods approach (n=4). Of the remaining 4 articles, 1 was based on a survey but was published as a data note due to its unexpectedly small sample size [28]. The other 3 articles can be broadly categorized as experience reports, as they aimed to describe practical examples or lessons learned regarding digital transformation, without collecting data in this context [29-31].

Most of the included articles were published during the first 2 years of the COVID-19 pandemic. Of the 3 included articles published in 2023, Bouey et al [32] was initially identified as a preprint, flagged as relevant, and included when it was fully published. Constantini et al [33] was identified through the search update.

The majority of the included articles (n=8) reported receiving financial support from a PO or indicated varying degrees of involvement by representatives of a PO [29-32,34-36], or an umbrella organization of POs [37]. Table 2 presents the objectives of the included articles, while Table 3 outlines their general characteristics. Also refer to Multimedia Appendix 4.

Chung et al [37] and McMullan et al [28], based on their surveys with representatives of rare disease POs, reported that the majority of participating organizations used digital communication tools to maintain contact with their members and provide ongoing support during the pandemic. This included enabling interactions through video calls, social media, and discussion forums.

In addition, Chung et al [37] described the digitalization of counseling services that were previously offered in person. Bouey et al [32] and Nemeth Blažić et al [31] also discussed this transition, focusing on POs that provide support and care for individuals with sexually transmitted infections, particularly HIV infection and AIDS, where counseling is an integral part of their prevention and testing activities. Various digital technologies were used to maintain support through counseling during the pandemic, such as videoconferencing software, email, and social media.

Chung et al [37] reported that relying on digital communication tools during the pandemic posed challenges to adequately supporting all members, as not all had access to these tools or were skilled enough to use them.

We could not identify any information on facilitating factors specifically associated with the digital transformation of POs’ communication and counseling services (Table S1-S4 in Multimedia Appendix 6).

The digital adaptation of POs’ information provision and educational activities was addressed in 3 of the included articles [28,35,37]. Marks et al [35] described the digital delivery of educational workshops through Zoom, while McMullan et al [28] briefly mentioned the implementation of weekly webinars and the distribution of information updates and newsletters. Similarly, Chung et al [37] reported the use of newsletters, along with the use of POs’ websites, as methods of disseminating information to members during the pandemic.

Marks et al [35] observed that participants in the educational workshops delivered via Zoom experienced social support and a sense of collectivity, echoing findings from digital group-based support activities. They also deduced from their qualitative interview data that professional facilitation and moderation created a positive learning environment where participants felt motivated and comfortable to engage. Attributes specific to the digital format, such as the ease of information sharing through chat, enhanced the learning experience. However, the authors also described challenges associated with the use of digital technology for some participants. Further details are provided in Table S1-S4 in Multimedia Appendix 6.

Chung et al [37] and McMullan et al [28] also addressed how POs have digitally transformed their operation. McMullan et al [28] specifically mentioned the transition of committee meetings to videoconferencing formats. Chung et al [37] also noted the digitalization of meetings, though they did not specify the types, and further addressed the broader digitalization of organizational operations as an adaptive response to the pandemic. Their survey of directors and representatives of rare disease POs in the Asia-Pacific region revealed that the “digitalization of operation” was most frequently stated as the predominant factor contributing to the perceived success of POs during the pandemic. However, the survey also showed that the actual success of these digital adjustment efforts varied by geographic region. For example, all 15 Australian organizations reported successful digital adaptation of their operations, while none of the 18 participating POs from Hong Kong were able to digitally adapt. The authors hypothesize that this disparity may be due to differences in the availability of the necessary digital infrastructure. Refer to Tables S1-S4 in Multimedia Appendix 6, for more details.

Based on the results of our systematic literature search, this review provides a comprehensive overview of how various POs adapted their services and operations to digital formats in response to pandemic-related circumstances. It covers a wide range of organizational types, health-related indications, and geographic areas, highlighting the broad impact of the pandemic.

Our analysis reveals that the COVID-19 pandemic prompted various digital responses from POs. It led to the adoption of new digital solutions or, in some cases, the significant expansion of existing digital services, to maintain essential activities under pandemic conditions and to meet support needs. All articles reported largely successful digital efforts by POs and their associated support groups, ensuring the continuation of their services in the midst of the pandemic. This is consistent with broader trends observed in the health care sector, where rapid digital transitions during the pandemic played a critical role in maintaining service delivery [13,17,18,20,21].

As all included articles focus on the immediate impact of the pandemic and the rapid adoption of digital solutions, it is not possible to reach definitive conclusions about the long-term impact of the pandemic on digitalization within these organizations, or its sustainability. However, our findings from 4 articles suggest a preference among some participants for the continuation of digital group activities [33,35,38,40]. This observation suggests that digital options might beneficially be preserved alongside the resumption of in-person meetings, particularly where digital experiences have been positive. Therefore, future research could explore the long-term implications of pandemic-induced digital transformations within these POs.

Another notable finding is that the digital transformation of group-based support activities is the most frequently and extensively reported response in our sample (n=9). This trend may be related to the fact that providing peer support, such as through support groups, is a core task of many POs [2,4,5]. The pressing need to digitize these services during the pandemic, which was likely a priority for organizations to continue providing support, may explain the extensive reporting of this transition.

The predominant use of videoconferencing software during the pandemic-driven digitalization is consistent with trends observed in various sectors, such as higher education [41] and health care [17]. This widespread adoption may be related to the nature of these tools, which enable audiovisual communication and are therefore closest to face-to-face interaction. Consequently, videoconferencing offers a more comprehensive mode of interaction, potentially making it a more appealing alternative for social interaction than purely speech- or text-based forms. Before conducting our review, we had considered the possibility that POs might develop specific digital solutions, most likely in collaboration with software developers, to better customize their services and meet the needs of their members. However, our findings did not indicate such developments. This may be due to the rapid and urgent nature of the pandemic-related digital adaptations, which likely made the development of specialized technologies impractical at the time. In addition, the relatively high cost may have been a limiting factor or existing tools may have been sufficient for the needs of POs.

The majority of articles addressing group activities reported that participants’ interpersonal experiences in online support groups were similar to those in face-to-face groups, including a sense of togetherness. This observation aligns with similar trends reported in studies on various digital support group formats that emerged independently of the COVID-19 pandemic [42-44]. Consequently, such groups may indeed serve as adequate alternatives to face-to-face group activities of POs. Another positive outcome highlighted in several articles, primarily regarding the digitalization of group activities, is increased accessibility. This shift has effectively removed several former barriers, allowing participants to access meetings from anywhere. This has been particularly beneficial for individuals with financial or mobility constraints. This reported benefit of improved access through digital technologies is consistent with previous findings, both during [13,20] and outside the pandemic period [42]. However, our review also shows that the shift to digital formats has simultaneously created new barriers, particularly for those with limited digital literacy or resources. These challenges also appear to transcend the pandemic context, as evidenced by other findings on digital health in both pandemic [13,20] and non-pandemic settings [45,46]. This dichotomy points to the dual nature of digital formats, as they can both bridge and widen access gaps and underscores the importance of nuanced consideration.

Regardless of the specific service or activity, we found that comparatively few factors were consistently reported as facilitators of digital transformation. The beneficial impact of skilled facilitators on the smooth digital adaptation of support groups and educational workshops, as reported by Marks et al [35] and Constantini et al [33], is also highlighted in a review not specifically related to the pandemic [46], making this a potentially relevant general recommendation for the future delivery of digital activities. From a broader perspective not focused on group activities, Chung et al [37] identified preexisting digital resources and experience in digitally delivering such services and activities as important facilitators of digital adaptation.

In conclusion, when establishing any kind of digital service within POs, it is likely to be advantageous to promote digital literacy among members and participants and to create solutions for those without access to digital technologies, as well as to be digitally equipped and experienced as an organization.

In contexts such as digital transformation in health care, ethical implications such as privacy and justice, as well as related issues, are frequently discussed [47]. Notably, as mentioned above, only Seckam and Hallingberg [34] reported ethical considerations related to the limited accessibility of digital formats and the unintentional exclusion of some group members due to digital literacy gaps or a lack of necessary technology. While other articles [34-36,40] also reported accessibility challenges, they did not explicitly categorize them as ethical issues. Bergmans et al [29], Penfold and Ogden [39], and Senreich et al [40] observed privacy concerns, although not explicitly framed as ethical issues either. These challenges regarding fair access and privacy align with those identified in the broader digital health landscape, where ethical guidance is suggested as an initial step to address such concerns [47]. However, only Bergmans et al [29] reported mitigating actions, such as “coaching” sessions to help participants navigate the privacy settings of digital platforms. Other articles did not specify the approaches taken by POs to address these potential ethical challenges.

First, our analysis is based on a limited sample of publications that may not fully represent the situation of all POs. Our search primarily yielded articles that focused on organizations in Europe, particularly the United Kingdom. Therefore, our findings may not fully capture the global situation. It is possible that digital responses related to the pandemic may have varied significantly in countries not included in our sample. In addition, the majority of the articles focused on well-established organizations with the resources to actively support research. Of these, 7 articles received funding from or were developed in an active collaboration with POs, suggesting that these factors may have influenced the scope of the available research on this topic. As a result, the experiences and perspectives of smaller, less financially equipped organizations may be underrepresented in our findings, despite representing a large proportion of POs in countries, such as Germany or the United States [3,4]. In conclusion, our findings indicate that the research literature predominantly focuses on more professionalized POs and entities in specific geographical regions. Hence, a need for more diverse research is apparent. Further, we found that despite the diverse activities of POs, the articles in this review did not address instances in which these organizations acted as advocates, which may include efforts to influence health policy making, collaborate with other health care stakeholders, or engage in research. Consequently, it remains unclear whether these specific activities were also adapted to digital formats, suggesting potential areas for further research.

Having acknowledged these limitations, it is important to clarify our objective. The primary purpose of this review was not to generate generalizable findings or to provide a comprehensive picture of the global situation. Rather, our aim was to determine what literature has been published on the topic, describe individual findings, identify emerging trends, and highlight research gaps. In fact, the absence of articles addressing certain gaps identified in our review is more indicative of a lack of diversity in the published literature. This may be due to factors such as POs lacking the necessary financial or human resources for research involvement, or possibly because engaging in research or publishing in academic journals is not a priority for some POs.

Finally, the quality of reporting within our sample varies, particularly in terms of depth. For example, most articles did not focus on the digital transformation process as such. This variation means that the amount of information we gathered and extracted varied. As a result, not all aspects of digital transformation were reported in each article, nor were they necessarily covered to the same extent.

A challenge in developing our search strategy was the lack of consistent terminology and definitions for POs. Hence, we refined our search strategy, incorporating various synonyms to retrieve relevant literature. After the initial search and screening, we identified additional terms as potentially relevant, such as “voluntary health agency.” The fact that adding these terms to the search strategy did not yield any additional relevant publications gives us further confidence that our search was sufficiently sensitive.

Also, we used a definition of POs that may reflect a rather Western perspective. Potentially, even broader inclusion criteria might have yielded more publications. However, this approach may have resulted in a sample with significant variation across organizations, making comparisons impossible. In addition, by limiting our review to nonprofit POs, the scope of our findings may be somewhat narrowed, as POs with different operational modes are not represented. Nevertheless, this approach reflects the predominant structure within the sector.

Finally, we included only articles published in English or German to ensure feasibility. The overall search results in PubMed, for example, showed only a modest increase in search results (0.87%) when no language filter was applied, and hence this language restriction appears to have been negligible.

Our findings on these rapid transitions can be taken as an indicator of the resilience and adaptability of these POs, and underscore the significant potential of digital technologies to enhance support services in such unprecedented times.

Based on the various aspects we identified in this review, potentially relevant recommendations for future PO digitalization strategies relate to promoting digital literacy among members and participants, creating solutions for those without access to digital technologies or those who may not wish to use them, and training PO staff to provide skilled and supportive delivery of digital services.

Our findings also highlight several research gaps. For example, there seems to be a predominant focus in the literature on well-established organizations in Western countries. This may overlook the unique experiences of smaller, less well-funded POs or those in different geographical areas. In addition, the current literature does not provide insights into areas such as advocacy or research engagement and their digital adaptations, suggesting potential areas for further research. Furthermore, while our review highlights the immediate digital responses of POs to the pandemic, the long-term sustainability and impact of these adjustments remain unclear. Future research should explore these aspects to fully understand the long-term impact of the COVID-19 pandemic on POs.