Digital Information Exchange Between the Public and Researchers in Health Studies: Scoping Review
Authors: Soltani Nazli , Dietz Thilo , Ochterbeck Doris , Dierkes Jens , Restel Katja , Christianson Lara , De Santis Karina Karolina , Zeeb Hajo 
Published: January 2025

Background

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

Objective

This scoping review aimed to describe how digital information exchange occurs between the 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) guidelines. 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 up to February 2024. Studies published in peer-reviewed journals were screened for inclusion based on the 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 were synthesized into main themes using descriptive statistics.

Results

Overall, 4072 records were screened, and 18 studies published between 2010 and 2021 were included. All studies evaluated or assessed the preferences for digital information exchange. The target populations included the public (mainly adults with any or specific diseases), researchers, or both. The digital information exchange methods included websites, emails, forums, platforms, social media, and 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 to 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 the health study process. The main barriers were that information exchange was not planned or not feasible due to inadequate resources, highly 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, public) preferences and needs that are required to deliver and facilitate interactive digital information exchange.

Conclusions

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