Digitization in health-related self-help – Results of an online survey among self-help organizations in Germany

Abstract

Background Nowadays, much hope and expectations are associated with digitization in the health sector. The digital change also affects health-related self-help. A nationwide survey of self-help organizations (SHOs) aimed to show chances and limitations in the use of interactive IT tools like webforums, online meetings or social media as well as digital infrastructures for their organizational management. In this survey, we also determined whether SHO staff themselves have support and qualification needs with regard to this topic. Design The online survey was conducted between 14 November and 8 December 2019, i.e., immediately before the outbreak of the Covid-19 pandemic. The questionnaire consisted of 50 questions consisting of 180 single items which could be answered in 30–40 min. After two reminder letters, 119 questionnaires of the SHOs were gathered and analysed. Results SHOs already have a lot of experience with digital media/tools (e.g., own homepage, social media, cloud computing). Some tools are attested a “high” or “very high” benefit by more than 80% of users. Perceived benefits, however, are also facing a number of problems, ranging from lack of resources to data protection issues. Despite, or even because of the limits of digitization, there is great desire and need for support and further training in SHOs (and self-help groups). Conclusions At many points in the survey it was shown that digital media can be a useful extension of “traditional” collective self-help. Taking into account the risks and limitations associated with digital tools, SHOs can be central stakeholders in digitization in health-related self-help. Patient or Public Contribution The study was financially supported by the Federal Ministry of Health, Germany. A detailed representation of the results is publicly available at: https://www.uke.de/dish .

Digitalisierung im Zuge der COVID-19-Pandemie: Chancen und Risiken digitaler Angebote der Sucht-Selbsthilfe

“…Die Befragten, die in einer ambulanten Selbsthilfegruppe waren, gaben mehrheitlich an, dass die Selbsthilfe nicht über ausreichende finanzielle Mittel für die Ausgestaltung der Digitalisierung verfügt. Bereits vor Beginn der Pandemie gaben im Rahmen einer Studie mehr als 70 % der befragten Selbsthilfeorganisationen an, nicht über ausreichende finanzielle Mittel für die Digitalisierung zur Verfügung zu haben [21]. Finanzielle Hilfen für Digitalisierungsmaßnahmen sind daher vor allem für finanziell schwächer aufgestellte Selbsthilfegruppen/ organisationen notwendig.…”

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

“…Before the pandemic, research indicated that the level of digitalization among POs varied widely. While many relied primarily on basic digital communication tools such as websites, email, and social media, others embraced advanced technologies and developed interactive platforms, mobile applications, or electronic patient databases to enhance the use of digital patient data for research [14][15][16]. These differences in digitalization levels may be linked to the organizational characteristics described above, as well as additional factors such as the digital literacy of PO leadership and members and their demographic profile [14].…”

“…While many relied primarily on basic digital communication tools such as websites, email, and social media, others embraced advanced technologies and developed interactive platforms, mobile applications, or electronic patient databases to enhance the use of digital patient data for research [14][15][16]. These differences in digitalization levels may be linked to the organizational characteristics described above, as well as additional factors such as the digital literacy of PO leadership and members and their demographic profile [14]. However, despite the significant role of POs as supporters and advocates, we found no comprehensive reviews synthesizing the existing research literature on their digitalization efforts during the COVID-19 pandemic.…”