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

Abstract

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.

Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process

“…Research is, therefore, needed to help identify what level of resource is required for the implementation of PPI to ensure plans for such involvement are realistic and adequately supported. Whilst work is being undertaken to develop frameworks and guidelines to guide PPI practice in research, PPI plans and activities often vary according to context . Two of the top ten prioritized topics (Topics 4 and 2) point to concerns about current models of PPI, highlighting the need for research to explore adaptations of PPI to the needs of particular trials, as well as methods to capture wider patient and public perspectives.…”

Practical guidance on undertaking a service evaluation

“…By its nature, evaluation takes place either when a change in practice has been made, or when it is suggested (Pollard et al, 2015). Staff may be resistant to the changes and become defensive of the service they provide.…”

“…The involvement of patients and members of the public in health and social care research is In terms of good practice, at least two PPI members should be involved from the very beginning, or as early as possible (Pollard et al, 2015). This provides an opportunity for shared working and support between public members.…”

“…The University of the West of England, Bristol has developed a set of Guidelines for good practice regarding PPI in research (University of the West of England, 2011), which have subsequently been evaluated (Pollard et al, 2015). The Guidelines highlight in some detail the challenges of doing PPI in research and evaluation and offer practical solutions.…”

Using children and young people as advocates to inform research design

“…Boote et al (2012) suggest that most advocate involvement is at the point of question identification, it is recommended that communities are consulted prior to deciding research agendas (Pollard et al 2015). Several models exist recommending more active involvement of advocates throughout the research process (Minogue et al 2005, Oliver et al 2014, Shipee et al 2013).…”