JMIR Publications

ABSTRACT

Background:

Information exchange regarding scope and content of health studies is becoming increasingly important. Digital methods, including study websites can facilitate such exchange.

Objective:

This study is a scoping review that aimed to describe how digital information exchange occurs between public and researchers in health studies.

Methods:

This scoping review was prospectively registered and adheres to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guideline. Eligibility was defined using the population (public and researchers), concept (digital information exchange), and context (health studies) framework. Bibliographic databases (MEDLINE, PsycINFO, CINAHL and Web of Science), bibliographies of the included studies and Google Scholar were searched through February 2024. Studies published in peer-reviewed journals were screened for inclusion in title, abstract, and full-text. Data items charted from studies included bibliographic and PCC (population, concept, and context) characteristics. Data were processed into categories that inductively emerged from the data and synthesized into main themes using descriptive statistics.

Results:

Overall, 4072 records were screened and 18 studies published between 2010-2021 were included. All studies evaluated or assessed the preferences for digital information exchange. Target populations included the public (mainly adults with any or specific diseases), the researchers, or both. The digital information exchange methods included websites, emails, forums, platforms, social media, or portals. Interactivity (ie, if digital information exchange is or should be active or passive) was addressed in half of the studies. Exchange content included health information or data with the aim to inform, recruit, link or gather innovative research ideas from participants in health studies. We identified 7 facilitators and 9 barriers of digital information exchange. The main facilitators were the consideration of any stakeholder perspectives and needs to clarify expectations and responsibilities, the use of modern or low-cost communication technologies and public-oriented language, and continuous communication of health study process. The main barriers were that information exchange was not planned or not feasible due to inadequate resources, too complex technical language was used, and ethical concerns (eg, breach of anonymity if study participants are brought together) were raised. Evidence gaps indicate that new studies should assess the methods and the receiver (ie, the public) preferences and needs that are required to deliver and facilitate (interactive) digital information exchange.

Conclusions:

Only few studies addressing digital information exchange in health studies could be identified in this review. There was little focus on interactivity in such exchange. Digital information exchange was associated with more barriers than facilitators suggesting that more effort is required to improve such exchange between the public and researchers. Future studies should investigate interactive digital methods and the receiver preferences and needs required for such an exchange.