DEVELOPING A MODEL TO ENHANCE PATIENT INVOLVEMENT IN DESIGNING AND CONDUCTING RESEARCH: VIEWS OF PATIENTS, ACADEMICS AND HEALTH SERVICE STAFF

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Abstract

Background

Patients with chronic conditions are at high risk of using unscheduled and emergency services because health status fluctuates and deteriorates. We work with them to design and conduct collaborative research, but need an effective interaction process with academic and organisational experts.

Objectives

To describe development and implementation of a model to enhance patient involvement in health and social care research.

Methods

Twenty patients with chronic conditions were supported by a researcher to develop ways to enable their involvement in health services research. We explored experience of being involved in research through the model through interviews with participating patients, academics and senior managers responsible for health policy and services. Data were audio-recorded with consent and analysed using Interpretative Phenomenological Analysis.

Results

Patients established a pool structure, sharing support, information and skills development. Members were recruited to more than 30 collaborative research opportunities over three years. Interview respondents agreed the model increased the number and proficiency of patients involved in research. Academics and health service managers perceived this was a credible and legitimate patient group. However recruitment and communication processes were seen as confusing and interaction in research meetings was not consistently effective. Patients found the language and culture of research environments was off-putting and said they did not always know what they should and could contribute.

Conclusions

We developed a model which enhanced patients' contributory expertise and strengthened some interaction processes when they were involved in research through collaboration. Further research training for patients, improved communication and better ways to match patients' skills to research opportunities are needed to strengthen the model. Research teams should also clarify aims and roles of all collaborators when involving patients in research, to enable all expertise to be effectively integrated within research processes.

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