I am the programme coordinator for a NIHR funded study (iPEx) which aims to find out whether, when and how the NHS should incorporate people’s experiences into on-line health information.
I coordinate a team based at Oxford, Glasgow, Northumbria and Sussex who have internationally recognised expertise in making patients’ ‘experiential’ information accessible to the public. We remain unsure whether, when and how the NHS should provide information based on other patients’ experiences. How do people find and interpret online patient experiences and relate it to their own lives? What are the positive and negative consequences? How might this affect their health and well-being? How do we measure these effects? Does patient experiential information provide added value compared to facts and figures? The iPEx study is designed to answer these questions so that we can advise the NHS about how patient experiences can be presented to best effect.
I also manage a project funded by the HS&DR entitled 'Secondary analysis of narrative interviews to inform NICE Quality Standards'. This project aims to identify common, core components of patients' experiences of the NHS to inform the development, and measurement, of NICE Quality Standards and then to examine the reach and limitations of these core components in describing the aspects of care that are important to patients from diverse backgrounds, with experience of different conditions and NHS care pathways.
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