Journal of Clinical Trials
Open Access

Developing a model to enhance patient involvement in designing and conducting research: Views of patients, academics and organisational staff

International Conference on Clinical Trials

July 27-29, 2015 Orlando-FL, USA

Helen Snooks, Evans B A, Porter A M, and Burholt V

ScientificTracks Abstracts-Workshop: J Clin Trials

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 audiorecorded
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.

Biography :

Helen Snooks is the Professor of Health Services Research in the Swansea University Medical School, UK. She is the Interim Director of the Swansea Trials Unit
(STU) and leads the Patient and Population Health and Informatics (PPHI) research stream at Swansea University. Helen’s main research interests and expertise
lie in the fields of Emergency Pre-hospital and Unscheduled Care, Clinical Audit and Effectiveness, and research support. The focus of her work is to plan, design
and carry out evaluations of health technologies and new models of service delivery. Helen has a Bsc (Hons) Economics, Sociology, Statistics from University of
Surrey with a PhD in Health Services Research ‘Post Traumatic Stress Disorder in seriously injured accident victims’ at the University of Sheffield in 2000.