Expanding free, educational resources for consumers on digital health topics is vital to increasing consumer-led research, experts say.
A lack of educational resources is holding back consumer involvement in digital health research, a new study has shown
Researchers from the University of Sydney and the Health Consumers Council of WA found very few resources dedicated to upskilling consumers in the development, evaluation and implementation of digital health tools.
In a keyword search of 23 digital health keywords across 21 consumer and government sites providing information free-of-charge, they found 6444 instances of the term “digital health” and 4863 of “data security”. But when combined with the word “consumer” the number of relevant search results plummeted, with only 27 results related to “digital health” and no results relating to “data security”.
Across the 11 websites hosted by health consumer organisations, only four free resources were identified that were targeted at upskilling consumers in how digital health tools and platforms were developed, evaluated and implemented. The majority lacked detail on what information consumers needed to be able to meaningfully contribute to co-design and implementation processes.
“Lived experience is invaluable, but methodological and technical knowledge is essential for consumers to fully contribute to digital health research,” the study’s authors wrote.
“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.”
Refining the search parameters to include more specific terms such as “interoperability” and “my health record”, researchers found several educational resources that offered “useful fundamental information” but were addressed primarily at improving user experience rather than looking more broadly to foster consumer involvement in co-design and implementation processes for digital health tools and platforms.
In contrast, researchers found ample resources offering tailored training and support for clinicians, nurses and other healthcare professionals covering a wide array of digital health topics, including electronic prescribing, virtual care, data analytics and governance as well as IT infrastructure and management.
While not currently available to consumers, educational resources targeted at health professionals could provide a useful “starting point” for developing consumer-oriented resources addressing similar topics, the authors argued, in addition to extending upon existing resources available through health consumer organisations such as Health Consumers Queensland’s advocacy toolkit.
“There are positive indications of growing consumer engagement in digital health research, yet as the digital health landscape expands and evolves, there may be a requirement for additional foundational resources to support this involvement effectively,” the authors wrote.
“Most consumer organisations have resources to support general consumer involvement in health research but have not yet included a focus on digital technologies.
“Expanding these toolboxes and frameworks to include resources for consumers to upskill in the development, evaluation, and implementation of digital health tools seem like a logical next step.”
The full study is available here.