Views of Individuals Concerning Research (VOICE): An interpretative phenomenological analysis

2014 Conference

Abstract: There is a clear need for research institutions to develop opportunities for patient and public involvement (PPI) within their research themes in order to:

1. provide high quality evidence in areas of importance to patients and the public
2. meet the recommendations of governance guidelines
3. meet the requirements of funding providers.

However, there is a lack of literature describing how PPI advisory groups have been developed, and a dearth of evidence on how development has considered the needs of group members in order to provide meaningful involvement, where such groups are already established.

The aim of the VOICE study was to explore the opinions of patients with uncommon and poorly understood respiratory conditions (chronic cough and aspergillosis) with respect to involvement in clinical research using hermeneutic phenomenology methodology. The main focus of the study was on the interpretation and understanding of motives for involvement or non-involvement in the research process. The purpose of this was to facilitate the development of a patient advisory group by ensuring opportunities for involvement were aligned with the interests and needs of patients themselves.

We hope the findings of this study will be both interesting and enlightening for INVOLVE delegates to hear and we welcome the opportunity for a discussion around PPI advisory group development.

Download poster