Electronic Health Records for biomedical research: when epistemology and ethics intertwine
The traditional purpose of health records in primary, secondary and social care contexts is to collect information about patients for management and clinical purposes. In this context, the transition towards electronic health records (EHR), sustained by the increasing availability and use of IT in clinical settings was initially motivated by the need to improve health care quality, by integrating information across different settings and allowing clinicians to have a better overview of individual patients. More recently, EHRs have also been used as an important source for public health and population health research. EHRs as well as administrative hospital data populate the larger vision of Data Science.
The use of EHRs in data science comes with many challenges. First of all, the use of EHRs in the context of biomedical research has raised ethical concerns mostly related to issues of privacy, informed consent, and repurposing of data. A complicated governance system needs therefore to be navigated by researchers in order to use EHRs in their research. In addition, epidemiologists have raised issues concerning the scientific validity and accuracy of research based on these data. One of the problems is that “data in EHRs is not a true reflection of the patient, but a reflection of the recording process in healthcare” (Hripcsak J of Am Med Inf 2012) and these contextual aspects need to be accounted in research. The origin of EHRs in clinical practice raises not only scientific challenges but also practical ones as it is often difficult for researchers to use unstructured information on records and curate the data.
The goal of this project is to explore the governance, ethical and practical challenges that arise in data science using EHRs. The project will require the candidate to engage in a literature review and interviews with experts in order to explore these sets of challenges. The analysis of these challenges will aim at exploring possible ways in which governance changes could address some of the practical/scientific and ethical challenges. Potential solutions will then be discussed within stakeholder meetings involving relevant actors in the field (Information Officers in Trusts, clinical professionals, data scientists, NHS policy makers, members of research ethics boards, etc).
RESEARCH EXPERIENCE, RESEARCH METHODS AND TRAINING
This project will involve empirical bioethics methods which combine philosophical and ethical analysis with empirical research. It will provide a range of training opportunities in empirical bioethics research methods, including literature review, conceptual ethical analysis, qualitative research, data analysis.
FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING
The project will require qualitative interviews with a diverse range of stakeholders in the UK.
This project would suit a candidate with a background in social/political sciences or philosophy wishing to develop expertise in the field of empirical bioethics with an interest in governance, new technologies, and health care.