Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers
This is the review of article by Eiric Meslin et al (2013) “Giving patients granular control of personal health information: Using an ethics ‘points to consider’ to inform informatics system designer".
How much information should be available to the patients about their medical care has been a controversial subject since decades. The electronic health records stores all the medical information about the patients electronically and transfer all necessary information through health information exchange(HIE) to providers and insures. This potential “tsunami of data”may create several ethical and legal barriers complicated by the different perspectives of physicians,patients and consumers about the proper scope of such control. Indeed, privacy issues alone are responsible for considerable commentary and reflection. The Health Insurance Portability and Accountability Act (HIPAA) stipulates numerous uses and disclosures of health information that do not require patient authorization (e.g., for treatment, payment, and health care operations) that could result in the disclosure of information to dozens of recipients. That's why developers of EHR systems must balance the benefits of granular control by patients with the risks of clinical harm to the patients.
The main objective of this study is to develop a structured ethics framework to accomplish more granular control to the patients of their health information in EHR.
The authors have developed “Points to consider (P2C) document tool from extensive literature reviewing.The P2C is an instrument that can be used to identify and guides decisions about complex ethical, regulatory, and policy choices.
The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. This P2C was created based on following questions
- How will the system make transparent the uses and flows of clinical information so that patients can make informed choices about disclosing/restricting their information?
- How will the system structure the array of choices patients can specify for disclosure and non-disclosure of their clinical information?
- How will technologically and/or medically unsophisticated patients, or those with other challenges, exercise their choices for granular control of their information?
- How will the system inform providers of a patient's preferences for data access/restrictions?
- Under what circumstances/conditions will the system allow health care providers to access patient data in ways that may over-ride stated preferences for granular control?
- How will patients be told about mandatory reporting requirements (e.g., public health, gunshots, abuse, disease registries, etc.) and their impact on granular control?
This P2C clarifies what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities.
- . Meslin,E.M., Alpert,S.A., Carroll,A.E., Odell,J.E., Tierney, W.M., Schwartz, P.H. (2013). Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers. International Journal of Medical Informatics,82(12),1136-1143. http://dx.doi.org/10.1016/j.ijmedinf.2013.08.010. Retrieved from http://www.sciencedirect.com/science/article/pii/S1386505613001895