Although wider use of health technologies can contribute to the improvement of public health and individual patient outcomes, increasing access to patient health information brings challenges. There is a balance to be struck between protecting individual privacy, for instance, and gaining benefits from additional data becoming available for healthcare research.
In this blog we will be documenting the progress of our research project looking at patient and public perceptions around Electronic Health Records (EHRs) used for care, research and policy-making purposes. We would like to share our findings, thoughts and plans with the public and invite feedback and comments from patients, health professionals, researchers, policy-makers and other interested parties.
This research is being conducted by a team led by Professor Derek Bell and Dr Julie Reed in the Department of Medicine at Imperial College London, based at NIHR CLAHRC for Northwest London at Chelsea and Westminster Hospital. The project is funded by the Wellcome Trust and involves collaboration with Professor Azeem Majeed in the Department of Primary Care and Public Health at Imperial College London and Dr Cicely Marston at the London School of Hygiene and Tropical Medicine.
We are very excited about completing data collection for the first phase of the project, which included a large-scale survey with over 5000 patients and members of the public in Northwest London. We are currently analysing the data on people’s views around EHRs and will post our work here soon.
The second qualitative phase of the project starts in September and we have planned workshops and focus groups where we aim to apply participatory methodologies for the study of EHRs. Our goal is to produce a strong empirical base concerning the ways people make sense of EHRs and to help patients, health professionals, researchers and policy-makers engage in meaningful dialogue around their benefits and risks.
In the third and final phase of the project we are aiming to engage with the public in order to co-produce a range of information and educational materials and activities that address people’s hopes and fears in relation to EHRs.
For more information or questions, please contact:
Chrysanthi Papoutsi (c.papoutsi@imperial.ac.uk)
NIHR CLAHRC for Northwest London, Department of Medicine, Imperial College London