Patient perspectives on access control of Electronic Health Records

Thesis submitted in partial fulfillment of the requirements for the Degree of Masters in Applied Philosophy and Ethics (MAPE) at Strathmore University, KenyaRecent technological advances pose a challenge to the basic framework of medical ethics and the fundamental nature of the doctor-patient relationship - a relationship based on consent and trust that has stood for almost 2,500 years. Access to health records may be granted, in limited circumstances, for example, to relatives or proxies of incapacitated or deceased patients. Disclosure of patient information for legal or public interest purposes, sharing of health information of people who lack mental capacity, and access to medical information relating to relatives all have ethical implications. The first objective of the study was to identify patient perspectives on access control to their Electronic Health Records (EHRs) by doctors, family, researchers and State. The second objective of the study was to identify the extent to which sensitivity of EHRs is linked to patient-controlled access to their EHRs. The third objective of the study was to investigate the extent to which different situations may affect patients’ perspective on access to their EHRs. This study adopted a mixed study approach in which a multi-site cross-sectional questionnaire was designed and piloted for use in waiting rooms and administered to randomly selected patients (N=394) in private doctor clinics in Nairobi, Kenya (in February 2019) . These clinics were involved in the pilot of a novel EHRs known as MedbookAfrica. Quantitative data was analysed using Statistical Package for Social Sciences (SPSS) while qualitative data was analysed thematically. A vast majority of patients (>70%) agreed that they have the right to grant or deny access to their EHR irrespective of the recipient or sensitivity. A vast majority also agreed that in emergencies, incapacitation or death, their health record should be made accessible. The interviews revealed that the recipients of the health record in case of emergency or incapacitation should be limited to close family members or primary doctor. The interviews also revealed that patients perceive their electronically stored health records to be safe. Patients expressed sharing preferences consistent with a desire to exercise autonomy over which health information is shared and with whom. Close family members and primary iv doctor were people that the patients felt should have access to their health records to assist in treatment and especially in emergency situations. The study recommended that a level of informed consent needs to be factored in during EHR design to protect patient autonomy and conditions when this can be overridden to be agreed upon by all stakeholders. An open dialogue between patients and health care providers is required to balance respect for patient autonomy and the health care provider’s need for patient information to provide good quality care