Research Protocol

NoteStatus

Draft. The eligibility criteria and limits can still change. The protocol will be registered on OSF Registries before screening begins, because PROSPERO does not accept scoping reviews. Registration link: to be added.

Background

This review maps the factors reported to influence the sharing and reuse of research data in health research, including barriers, facilitators, and governance mechanisms.

This review updates the 2019 review of research data sharing (Chawinga and Zinn 2019) with the scoping review methods of Cavallaro et al. (2026). The 2019 review shares this review’s focus on research data sharing, which makes it a strong candidate for an update. It looks at differences across countries. This review looks at differences across research domains, with special attention on healthcare.

Earlier reviews address parts of this topic. Reviews in health and medical research examine incentives (Rowhani-Farid et al. 2017), principles and norms (Kalkman et al. 2019), and governance mechanisms such as harmonized data access agreements (Saulnier et al. 2019). Reviews in public health examine barriers to public health data sharing but exclude research data sharing (van Panhuis et al. 2014).

This review compares health research data sharing with data sharing in general and in other fields. Beyond health, cross-disciplinary reviews cover what drives and inhibits researchers in sharing and reusing data (Fecher et al. 2015; Zuiderwijk et al. 2020; Perrier et al. 2020).

The taxonomy of factors this review produces serves the CITF-emails study, where it supports manual annotation for supervised machine learning on the emails and identifies factors that the emails cover only in part.

Objective and questions

The objective is to map the factors reported to influence the sharing and reuse of research data in health research, and to compare them with the factors reported for other fields and for public health data.

  1. Which factors (barriers, facilitators, and governance mechanisms) are reported to influence the sharing and reuse of research data in health research?
  2. How can these factors be organized into a taxonomy suitable for annotating correspondence about data sharing?
  3. How do the factors reported for health research differ from those reported for research in other fields and for public health data?

Methods

The review follows the scoping review framework of Arksey and O’Malley (2005) as refined by Levac et al. (2010) and the JBI guidance (Peters et al. 2020). The method draws on the protocol of Cavallaro et al. (2026), which pairs machine learning screening with automated deduplication. It improves on that protocol in deduplication and seed generation. The review is reported according to PRISMA-ScR (Tricco et al. 2018). The searches are reported according to PRISMA-S (Rethlefsen et al. 2021). The flow diagram adapts the PRISMA 2020 template (Page et al. 2021), with “sources of evidence” in place of “studies”.

Eligibility criteria

The criteria follow the population, concept, and context (PCC) structure that JBI recommends for scoping reviews.

Element Criterion
Population No restriction. Sources may concern researchers, data stewards, institutions, or governance bodies.
Concept Factors that influence the sharing and reuse of research data, including barriers, facilitators, and governance mechanisms. Research data are data collected for research purposes under ethics oversight.
Context, tier 1 Health research. All source types are eligible.
Context, tier 2 Research in other fields and cross-disciplinary research. Reviews and syntheses only.

Sources are excluded when they concern only public health data or other health systems data, or only clinical care data. The rule for routine or clinical data reused for research is not yet set. Each source is assigned a tier at screening from its field.

The search covers 2015 to 2025. Language limits are not yet set. Any limit will be stated and justified, as PRISMA-S item 9 requires.

Selection of sources

Records are deduplicated with ASySD, which, unlike the Zotero workflow of Cavallaro et al. (2026), runs from a script and makes the step reproducible. The records are then screened on title and abstract in ASReview, and again on full text, against the screening guide. Exclusion reasons are recorded at full text. Counts at every stage feed the flow diagram.

ASReview ranks records by predicted relevance and starts from a seed sample. The seed is the base RDS query (Q1), which returned 308 records against 4,192 for the four queries combined (7.3%), modestly above the conventional 5%. A seed from a fixed keyword is reproducible. Cavallaro et al. (2026) select their seed sample ad hoc from the first 5% of deduplicated records.

Data charting

Each included source is charted once into the form defined in the codebook, with one row for the source and one row for each factor it reports. The form is piloted on a sample of sources and revised before full charting begins.

Synthesis

The review codes factors inductively. The resulting taxonomy is a primary output. Counts by tier, field, source type, and year describe the evidence base, and the factor categories are compared across fields.

Reporting and data

The checklists for PRISMA-ScR and PRISMA-S record where each item is reported. The flow diagram is generated from the screening counts. Search exports, screening decisions, charted data, and all code are in the repository.

Open decisions

  • Language limits.
  • The rule for routine or clinical data reused for research.
  • The definition of research data, by purpose or by consent.
  • The number of screeners, calibration on a sample, and the handling of disagreement.
  • Critical appraisal of included sources, which PRISMA-ScR treats as optional.
  • Whether any step uses a large language model. Any such step will be reported following the PRISMA 2020 guidance on automation tools and the RAISE guidance.

References

Arksey, H., and L. O’Malley. 2005. “Scoping Studies: Towards a Methodological Framework.” International Journal of Social Research Methodology 8 (1): 19–32. https://doi.org/10.1080/1364557032000119616.
Cavallaro, Ludovico, Philipp Graf, Josephine Verona Konrad, et al. 2026. “Conceptualization, Operationalization, and Measurement of Adherence to Patient-Facing Digital Health Applications: Protocol for a Scoping Review.” JMIR Research Protocols 15: e95287. https://doi.org/10.2196/95287.
Chawinga, Winner Dominic, and Sandy Zinn. 2019. “Global Perspectives of Research Data Sharing: A Systematic Literature Review.” Library & Information Science Research 41 (2): 109–22. https://doi.org/10.1016/j.lisr.2019.04.004.
Fecher, B., S. Friesike, and M. Hebing. 2015. “What Drives Academic Data Sharing?” PLoS ONE 10 (2): e0118053. https://doi.org/10.1371/journal.pone.0118053.
Kalkman, S., M. Mostert, C. Gerlinger, et al. 2019. “Responsible Data Sharing in International Health Research: A Systematic Review of Principles and Norms.” BMC Medical Ethics 20 (21). https://doi.org/10.1186/s12910-019-0359-9.
Levac, Danielle, Heather Colquhoun, and Kelly K. O’Brien. 2010. “Scoping Studies: Advancing the Methodology.” Implementation Science 5: 69. https://doi.org/10.1186/1748-5908-5-69.
Page, M. J., J. E. McKenzie, P. M. Bossuyt, et al. 2021. “The PRISMA 2020 Statement: An Updated Guideline for Reporting Systematic Reviews.” BMJ 372: n71. https://doi.org/10.1136/bmj.n71.
Perrier, Laure, E. Blondal, and H. MacDonald. 2020. “The Views, Perspectives, and Experiences of Academic Researchers with Data Sharing and Reuse: A Meta-Synthesis.” PLoS ONE 15 (2): e0229182. https://doi.org/10.1371/journal.pone.0229182.
Peters, Micah D. J. et al. 2020. “Updated Methodological Guidance for the Conduct of Scoping Reviews.” JBI Evidence Synthesis 18 (10): 2119–26. https://doi.org/10.11124/JBIES-20-00167.
Rethlefsen, Melissa L., Shona Kirtley, Siw Waffenschmidt, et al. 2021. “PRISMA-S: An Extension to the PRISMA Statement for Reporting Literature Searches in Systematic Reviews.” Systematic Reviews 10: 39. https://doi.org/10.1186/s13643-020-01542-z.
Rowhani-Farid, Anisa, Michelle Allen, and Adrian G. Barnett. 2017. “What Incentives Increase Data Sharing in Health and Medical Research? A Systematic Review.” Research Integrity and Peer Review 2: 4. https://doi.org/10.1186/s41073-017-0028-9.
Saulnier, Katie M., David Bujold, Stephanie O. M. Dyke, et al. 2019. “Benefits and Barriers in the Design of Harmonized Access Agreements for International Data Sharing.” Scientific Data 6 (1): 297. https://doi.org/10.1038/s41597-019-0310-4.
Tricco, Andrea C., Erin Lillie, Wasifa Zarin, et al. 2018. “PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation.” Annals of Internal Medicine 169 (7): 467–73. https://doi.org/10.7326/M18-0850.
van Panhuis, Willem G., Proma Paul, Claudia Emerson, et al. 2014. “A Systematic Review of Barriers to Data Sharing in Public Health.” BMC Public Health 14: 1144. https://doi.org/10.1186/1471-2458-14-1144.
Zuiderwijk, Anneke, Rhythima Shinde, and Wei Jeng. 2020. “What Drives and Inhibits Researchers to Share and Use Open Research Data? A Systematic Literature Review to Analyze Factors Influencing Open Research Data Adoption.” PLoS ONE 15 (9): e0239283. https://doi.org/10.1371/journal.pone.0239283.