Research title: Patient consent to share data in their electronic health records: exploring issues and surfacing the complexities.
Supervisors: Dr Sue Richardson (Faculty of Management and Law, University of Bradford) and Professor Mohamed Amin Mohammed.
I started in the academics field as a graduate tutor back in 2000. As part of my studies, I completed my MSc in Analysis, Design and Management of Information Systems from The London School of Economics and Political Science, based at the ‘Information Systems’ department. Here, I aligned with the department’s ethos of examine information systems through a socio-technical lens, often focusing not just on technologies but also on the wider social, organizational cultural aspects which shape the working and implementation of information systems in real life. I was then based at the Leeds Institute of Health Sciences, where I used my socio-technical insights to examine data sharing issues in Large Scale Complex IT systems within the health sector.
Based on this background, I started to get interested in examining the ways in which patient consent to share their health data. Most electronic health records (EHR) today are designed with a number of assumptions by their designers and commissioners. In traditional health records (often paper based), assumptions by most practitioners were that communication between the health care workers would be a one-to-one exchange of messages, where the initiating party would know the other party which is being queried. These exchanges, often comparable to telephone conversations lead to create conflicts when sharing of information takes place, as ten years ago, most system users did not expect this information to move across systems. However, this attitude seems to be changing rapidly now. More problems arise when use of EHRs increases, with the number of people accessing the information snowballing. In order to facilitate this increased sharing of EHRs, clinical structures and content also needs to evolve, which can lead to facilitation for patients as their information is shared across organizational boundaries. On the other hand, one of the problems is that professionals are often not aware of all the devices or systems which are collecting information about their patients from their respective electronic health records. This informed contest includes the construction of such record for use, storage, communication and manipulation of records and data which they may contain. However, the impact of these technologies (and lately those of ‘mobile apps’) on gaining the consent from patients is often unclear. Moreover, the shaping of perceptions and assumptions of these systems also changes as new technologies are introduced, both for patients and for clinicians.
The following preliminary research question has been formulated:
- What are the potential benefits and limitations of the use of mobile technologies, such as smart phone ‘apps’ for accessing and controlling health data access by patients (and their carers)?
- What problems would be faced by patients when using a mobile ‘app’ as a portal for managing consent to their electronic health records?
- What are the benefits or limitations for system designers and clinicians to encourage and proliferate the use of ‘patient-facing’ mobile ‘apps’, by the patient and their carers for gaining consent both for care and wider research?