Developing and evaluating guidelines for patient and public involvement (PPI) in research

• Published in: International journal of health care quality assurance Vol. 28; no. 2; pp. 141 - 155
• Main Authors: Pollard, Katherine, Donskoy, Anne-Laure, Moule, Pamela, Donald, Christine, Lima, Michelle, Rice, Cathy
• Format: Journal Article
• Language: English
• Published: England Emerald Group Publishing Limited 09.03.2015
• Subjects: Academic staff; Caregivers; Citizen participation; Communication; Community; Grounded theory; Guidelines as Topic; Health & social care; Health care; Health service delivery; Health service quality; Health services; Health Services Research - organization & administration; Health Services Research - standards; Humans; Information Dissemination; Living skills; Mapping; Mental health; Patient participation; Patient Participation - methods; Patients; Professional ethics; Professionals; Quality of care; Reassurance; Research design; Research methodology; Skills; Social services; Time Factors; Workshops; United Kingdom > UK; England; Evaluation; PPI in research; Guidelines
• ISSN: 0952-6862; 1758-6542
• DOI: 10.1108/IJHCQA-01-2014-0001

Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.