Helen Snooks
Swansea University Medical School, UK
Title: Developing a model to enhance patient involvement in designing and conducting research: Views of patients, academics and organisational staff
Biography
Biography: Helen Snooks
Abstract
Background: For patients to fully contribute their expertise to designing and conducting collaborative research, the interaction process with academic and organisational experts needs to be effective.
Objectives: To describe development and implementation of a model to enhance patient involvement in health and social care research.
Methods: Patients with chronic conditions were supported by a researcher to develop ways to enable their involvement in research about chronic conditions management. 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 while available for recruitment 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 organisational managers perceived this was a credible and legitimate patient group. But recruitment and communication processes were confusing and interaction in research meetings was not consistently effective, they reported. 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.
