Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/50421, first published .
Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review

Journals

  1. Yusuf Z, Dixon W, Sharp C, Cook L, Holm S, Sanders C. Building and Sustaining Public Trust in Health Data Sharing for Musculoskeletal Research: Semistructured Interview and Focus Group Study. Journal of Medical Internet Research 2024;26:e53024 View
  2. Kaplow K, Downey M, Stewart D, Massie A, Motter J, Taylor L, Massarelli J, Matalon T, Sidoti C, Levan M, Parent B. Data professionals’ attitudes on data privacy, sharing, and consent in healthcare and research. DIGITAL HEALTH 2024;10 View
  3. Shi L, Fiscella N, Leung W. Status in using wearable devices as surveillance tools in public health research among people with disabilities: preliminary analysis of 2017 BRFSS. Disability and Rehabilitation: Assistive Technology 2025;20(4):1117 View
  4. Eversdijk M, Douma E, Habibovic M, Kop W. The Association of Psychological Factors With Willingness to Share Health-Related Data From Technological Devices: Cross-Sectional Questionnaire Study. JMIR Formative Research 2025;9:e64244 View
  5. Skovgaard L, Ekstrøm C, Svendsen M, Hoeyer K, Chima S. Survey of attitudes in a Danish public towards reuse of health data. PLOS ONE 2024;19(12):e0312558 View
  6. Nagappan A, Zhu X. Patterns of willingness to share health data with key stakeholders in US consumers: a latent class analysis. Journal of the American Medical Informatics Association 2025;32(4):702 View
  7. Sassa M, Eguchi A, Maruyama-Sakurai K, Fujita T, Kawamura Y, Kawashima T, Tanoue Y, Yoneoka D, Miyata H, Yamashita T, Nakashima N, Nomura S. Heterogeneity in willingness to share personal health information: a nationwide cluster analysis of 20,000 adults in Japan. Archives of Public Health 2025;83(1) View
  8. Dotter C, Haug S, Schnell R, Raptis G, Weber K. Sharing health data for research purposes: results of a population survey in Germany. BMC Health Services Research 2025;25(1) View
  9. Alimohamed M, Obeng G, Csanadi M, Masimirembwa C, Dandara C. Implementing health economics for pharmacogenomics research translation in Africa. Communications Medicine 2025;5(1) View
  10. van Drumpt S, Chawla K, Barbereau T, Spagnuelo D, van de Burgwal L. Secondary use under the European Health Data Space: setting the scene and towards a research agenda on privacy-enhancing technologies. Frontiers in Digital Health 2025;7 View
  11. Ahmed M, Okesanya O, Oweidat M, Othman Z, Musa S, Lucero-Prisno III D. The ethics of data mining in healthcare: challenges, frameworks, and future directions. BioData Mining 2025;18(1) View
  12. Smedinga M, Ballantyne A, Schaefer G. Why de-identified data sharing for research should be in the public interest. Journal of Medical Ethics 2025:jme-2025-110825 View
  13. Bedenik T, Geaney F, Foley B, Flynn R, Bennett K. If it wasn’t for us, there would be no data: stakeholders’ perspectives on patient involvement in the use of health data in Ireland. Research Involvement and Engagement 2025;11(1) View
  14. DENG Z. LEGAL REGULATION OF PERSONAL HEALTH DATA SHARING IN THE EU AND ITS IMPLICATIONS FOR CHINA. SSRN Electronic Journal 2025 View
  15. Liu X, Xu M, Wang H, Zhu L. Integrating Precision Medicine and Digital Health in Personalized Weight Management: The Central Role of Nutrition. Nutrients 2025;17(16):2695 View
  16. Eisner E, Ball H, Ainsworth J, Cella M, Chalmers N, Clifford S, Drake R, Elton D, Faulkner S, Greenwood K, Gumley A, Haddock G, Kendall K, Kenny A, Krogsæter T, Lees J, Lewis S, Maclean L, O’Hare K, Phiri A, Richardson C, Schwannauer M, Turner R, Walsh A, Walters J, Wykes T, Zahid U, Bucci S. Using Passive Sensing to Predict Psychosis Relapse: An In-Depth Qualitative Study Exploring Perspectives of People With Psychosis. Schizophrenia Bulletin 2025 View
  17. Olsen Q, Dyda A, Woods L, Lobo E, Eden R, Krahe M, Richards B, Pather N, McGee L, Sullivan C, Pole J. Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis. npj Digital Medicine 2025;8(1) View
  18. Carr R, Chan V, West N, Görges M. Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review. Interactive Journal of Medical Research 2025;14:e65606 View
  19. Parsons M, Skolnik M, Mwobobia J, Solomon E, DuBois J, McIntosh T, Sahoo J. Ethical implications of neurotechnology in industry-academia partnerships: Insights from patient and research participant interviews. PLOS One 2025;20(9):e0330367 View
  20. Brütting C, Moser K, Heise M, Bauch F, Frese T. Health disparities and selection bias in obtaining broad consent in a general practitioner setting. Frontiers in Medicine 2025;12 View
  21. Hauschildt K. Dissemination Feasibility Follows Robust Informed Consent. NEJM Evidence 2025;4(10) View
  22. Molino A, Revere D, Hills R, Elder A, West L, Karras B, Baumgartner C, Baseman J. Exploring Attitudes and Obstacles Around Digital Public Health Tools: Insights From a Statewide Cross-Sectional Survey on Washington’s Vaccine Verification System. Journal of Medical Internet Research 2025;27:e66550 View
  23. Fukuda Y, Fukuda K. Public Attitudes and Predictors of Public Awareness of Personal Digital Health Data Sharing for Research: Cross-Sectional Study in Japan. JMIR Human Factors 2025;12:e64192 View
  24. Krahe M, Eden R, Pole J, Richards B, Olsen Q, Dyda A, Lobo E, Pather N, Sullivan C, Woods L. A scientometric review of health data sharing for secondary use: Insights, frontiers and the path ahead. Health Information Management Journal 2025 View

Conference Proceedings

  1. Alosaime S, Jhumka A. 2025 IEEE 22nd International Conference on Mobile Ad-Hoc and Smart Systems (MASS). RIFLES: Resource-effIcient Federated LEarning via Scheduling View