Supporting meaningful patient and public involvement in systematic reviews

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (7)

Date: 

Tuesday 18 September 2018 - 11:10 to 11:30

Location: 

Ochil 2

All authors in correct order:

Blackburn S1, Rhodes C1, Higginbottom A1, Jordan JL1, Hyde C1, Bermeo IT1, Chew-Graham C1, Dziedzic K1
1 Research Institute for Primary Care and Health Sciences, Keele University, United Kingdom
Presenting author and contact person

Presenting author:

Steven Blackburn

Contact person:

Steven Blackburn
Joanne Jordan
Abstract text
Background:
The Research Institute for Primary Care and Health Sciences, Keele University has a successful recruitment and support system for delivering patient and public involvement and engagement (PPIE) in research. We now have over 100 people in our Research User Group (RUG) with lived experience of a range of musculoskeletal, mental health and other long-term conditions. Study teams involve RUG members throughout the research cycle and in a range of study designs, including systematic reviews (SRs).

Objectives:
To describe our approach to delivering and supporting PPIE, in the context of two SRs. The first investigated shared decision-making between General Practice doctors and patients during consultations; the second examined self-harm in older adults.

Methods:
We invited RUG members to be involved from the start to completion of both the SRs. To support the meaningful involvement of RUG members, we developed good practice procedures through experience and current guidance from INVOLVE and others.

Results:
We will highlight the involvement of RUG members and the impact this had in different stages of the SR research cycle including:

- identifying and prioritising the research questions;
- designing and managing research projects;
- disseminating findings.

Our support systems that underpinned PPIE in these studies included a dedicated PPIE team along with a number of resources to help the RUG and researchers work together. These included attending research meetings with RUG members, newsletters, guides, glossaries and training courses. We will also highlight the importance of our group's links to regional and national public involvement networks and organisations to learn and share best practice (e.g. Research Design Service, INVOLVE). For example, we have adopted the INVOLVE Values and Principles Framework throughout all of our work and we are planning to roll out the new National Standards for Public Involvement in Research.

Conclusions:
Our open model of recruitment attracting 'expertise by experience' has succeeded and is underpinned by an effective support system including the development of a PPIE team and resources.

Patient or healthcare consumer involvement:
We supported the meaningful involvement of patients, carers and the public in both systematic reviews highlighted, as well as many other research studies.

Relevance to patients and consumers: 

RUG members are actively involved in all areas of our research studies. In both systematic reviews, patients and the public highlighted the topics were important to them and contributed to refining the research questions and the design and scope of the reviews. The involvement of RUG members in interpreting and disseminating the findings ensured the reviews reflected patient priorities. The lay member of our PPIE team helped draft this statement.