Upskilling consumers for the digital health era: a content analysis of resources for consumer representative training

Background In the past decade digital health research has exponentially increased. Concurrently, consumer involvement in digital health research has grown, but often relegated to late stages like user experience testing, for which a fundamental capability is digital health literacy. In-depth knowledge about how digital health tools and platforms are developed, evaluated, and implemented is necessary for higher levels of meaningful consumer involvement in digital health research. It is unclear what resources are freely available to consumer representatives and advocates to learn how digital health tools and platforms are developed, evaluated, and implemented.Aim To examine what freely available resources are available for consumers to learn how digital health tools and platforms are developed, evaluated, and implemented.Methods This was a content analysis study. Keywords representing digital health were identified in an iterative process with consumer advocate members of the research team. Researchers compiled a list of possible online resources where relevant educational material could be found. One investigator searched these resources in February 2024, recording website URLs and keyword frequencies. Keyword context was assessed to ensure alignment with study eligibility criteria. Data extraction was performed independently by two investigators with discrepancies resolved through discussion.Results We reduced an initial list of 129 keywords, to 13 MeSH headings to include in the initial search. This number increased to 23 keywords searched in a subsequent refined search. We searched 21 websites; 13 were from Australian non-government organizations(NGOs), with 11 were hosted by health consumer organizations. Government websites(n = 3), a cooperative website(n = 1), and international websites(n = 4) comprised the remainder. The digital health keywords most commonly found were digital health (n = 6444 instances), followed by data security (n = 4863 instances). When these keywords were paired with the keyword “consumer” we found limited resources to upskill in the development, evaluation, and implementation of digital health tools.Discussion The extent of consumer involvement in digital health research is compromised due to limited available resources to upskill consumer representatives and advocates. This poses a challenge for consumer involvement in digital health research as digital health technologies are ubiquitous yet evolving.