Empowering Patients through Transparent Access to Personal Health Data


Abstract views: 152 / PDF downloads: 133

Authors

  • Ekaterina Kan Tashkent State University of Law

DOI:

https://doi.org/10.59022/ijlp.188

Keywords:

Patient Empowerment, Personal Health Information, Electronic Health Records, Health Information Exchange, Interoperability, Patient-centered Care, Digital Health, Health Data Transparency

Abstract

The rapid digitalization of healthcare has brought about new opportunities and challenges for patient empowerment. This comprehensive literature review explores the importance of transparent access to personal health information (PHI) in enabling patients to take control of their health in the digital age. The findings reveal that patients with access to their PHI report greater engagement in their care and improved health outcomes. The development of patient-centered health information exchanges (HIEs) and clinically integrated networks (CINs) can help bridge the gap between patients and their health data. To achieve patient empowerment in the digital age, healthcare organizations must prioritize the development of patient-centric tools and platforms that facilitate transparent access to PHI, while policymakers should consider regulations that mandate patient access to their health data and incentivize the adoption of interoperable EHR systems. Future research should explore the specific needs and preferences of patients regarding PHI access and the impact of patient empowerment initiatives on health outcomes and healthcare costs.

References

Cahill, J. E., & Gilbert, M. R. (2018). Personal health records: Empowering patients through information. Journal of AHIMA, 89(2), 20-25. https://library.ahima.org/doc?oid=302027

Cahill, J. E., & Gilbert, M. R. (2018). Personal Health Records: Empowering Patients Through Information. Journal of AHIMA, 89(2), 20-25

Califano, S., Cantor, M., & Shubina, M. (2019). Patient access to electronic health records: Differences across ten countries. Health Policy and Technology, 8(1), 1-9. https://doi.org/10.1016/j.hlpt.2018.11.003

Johnson, C., Richwine, C., & Patel, V. (2020). Individuals' access and use of patient portals and smartphone health apps, 2020. ONC Data Brief, no. 54. Office of the National Coordinator for Health Information Technology. https://www.healthit.gov/sites/default/files/page/2020-12/2018HINTSCancerSurvivorDataBrief.pdf

Kish, L. J., & Topol, E. J. (2015). Unpatients—why patients should own their medical data. Nature Biotechnology, 33(9), 921-924. https://doi.org/10.1038/nbt.3340

Kish, L. J., & Topol, E. J. (2015). Unpatients—why patients should own their medical data. Nature Biotechnology, 33(9), 921-924. https://doi.org/10.1038/nbt.3340 DOI: https://doi.org/10.1038/nbt.3340

Mandl, K. D., & Kohane, I. S. (2016). Time for a Patient-Driven Health Information Economy? The New England Journal of Medicine, 374(3), 205-208. https://doi.org/10.1056/NEJMp1512142 DOI: https://doi.org/10.1056/NEJMp1512142

Office of the National Coordinator for Health Information Technology (ONC). (2020). 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program. Retrieved from https://www.healthit.gov/curesrule/

Roehrs, A., da Costa, C. A., & da Rosa Righi, R. (2017). OmniPHR: A distributed architecture model to integrate personal health records. Journal of Biomedical Informatics, 71, 70-81. https://doi.org/10.1016/j.jbi.2017.05.012 DOI: https://doi.org/10.1016/j.jbi.2017.05.012

Smith, J. D., Birkeland, A. C., Goldman, E. B., Brenner, J. C., Carey, T. E., & Spector-Bagdady, K. (2019). Immortal Life of the Common Rule: Ethics, Consent, and the Future of Cancer Research. Journal of Clinical Oncology, 37(24), 2061-2069. https://doi.org/10.1200/JCO.19.00508 DOI: https://doi.org/10.1200/JCO.19.00508

Wolfe, L., Chisolm, S. S., & Bohsali, F. (2018). Clinically Integrated Networks: A Framework for Patient Empowerment. Journal of General Internal Medicine, 33(3), 223-225. https://doi.org/10.1007/s11606-017-4244-2 DOI: https://doi.org/10.1007/s11606-017-4244-2

Published

2024-05-30

How to Cite

Kan, E. (2024). Empowering Patients through Transparent Access to Personal Health Data. International Journal of Law and Policy, 2(5), 37–41. https://doi.org/10.59022/ijlp.188

Issue

Section

Abstract