Title: Examining the role of patients' experiences as a resource for choice and decision-making in health care
Funder: Department of Health (England)

Abstract: The aim of the programme is to find out whether, when and how the NHS should incorporate people’s experiences (PEx) into online health information. To do this we need to understand the mechanisms through which PEx may influence health, develop the tools to measure the effects,explore how PEx is used, and test prototype websites on exemplar conditions. The programme will be delivered through 3 work packages. Background The Department of Health is committed to giving reliable and timely health information to the public and patients. Traditional health information has been based on facts and figures, not the experiences of patients. Many different types of PEx are available online in health information sites, social networking, reputation systems (an approach borrowed from e-commerce) and on-line support groups. PEx may support and inform people but there are also concerns, eg that people may make poor decisions if they identify with powerful stories that are not relevant to their circumstances Research Plans The projects in work package 1 establish the conceptual and theoretical underpinnings for the study with a ‘realist’ literature review which will include identifying outcomes measures currently used in research; qualitative secondary analysis of a collection of narrative interviews held by the Oxford group; and development of an assessment tool to measure unique aspects of PEx interventions Work package 2 includes an ethnographic study of how PEx is used in online support groups and a series of detailed, computer lab explorations of how patients use and respond to a variety of different types of websites that use PEx (health information sites, social networking sites and ‘reputation’ sites) presented as single stories, testimonials or ‘maximum variation’ samples. The findings will clarify how best to present PEx to support and inform and will contribute to guidelines for online PEx information. Work package 3 will use these guidelines to develop a set of prototype PEx multi-media websites. Comparison sites will have similar content and design but specifically exclude PEx. Smoking cessation, infertility and caring for someone with a neurological condition have been selected as exemplars with the likelihood of transferable lessons for other health issues. A series of exploratory trials, using the MRC complex intervention framework, will assess acceptability, feasibility and effect on health. Research Team We have gathered a multi-disciplinary team with established records of working together, an unrivalled track record, and complementary skills in innovation and research on patients’ experience, e-health, outcomes measurement, self-care, clinical expertise, the practitioner-patient relationship, primary care research, and dissemination of information about health and social care. Programme Management The programme will be coordinated in Oxford, where the research in work packages 1& 3 will also take place. Work package 2 involves a series of specialist, lab based explorations that will be conducted by co-applicants (all leading researchers in the field) at the Oxford Internet Institute (social networking sites), Northumbria (patient experiences sites) and Warwick (online support groups). Research Environment The programme will benefit from the close working relationship between the PCT and the RAE top rated University Department of Primary Health Care in Oxford. Co-applicants bring environments with excellent track records in research on e-health and the internet. Anticipated outputs (see Figure 1 for integration and outputs) The programme will clarify whether, when and how the NHS should provide information based on PEx. Our aim is to provide transferable lessons for the use of online PEx. Outputs include a new assessment tool, guidelines for the inclusion of PEx, a doctoral thesis and a series of presentations and peer reviewed papers in our multidisciplinary fields. Patient and public involvement The project will be both consultative and collaborative in user involvement. We have consulted users in preparing the proposal, a service user (MB) is a co-applicant and she will ensure user involvement for the programme in individual work packages, and annual feedback and development meetings between the applicants, PCT and user groups. Ethical implications The programme includes research with members of the public, internet communities and patients and will therefore require ethical review. Justification for resources requested The main costs are for staff - research, co-ordination, administrative support, PhD student fees and supervision. To ensure that the programme is fully integrated all co-applicants are funded for regular involvement throughout the 60 months. Research costs include equipment, questionnaires, transcription, travel and costs for prototype PEx interventions for the exploratory trials.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE