The ‘IMPRESS’ project: Researching the IMPlementation and evaluation of Patient and Public Involvement (PPI) in CLAHRC East of England RESearch
Plain English Summary
‘IMPRESS’ is a study funded by the CLAHRC East of England and run by teams from the Universities of East Anglia and Hertfordshire. ‘IMPRESS’ aimed to find out how Patient and Public Involvement is being used within projects that are part of the CLAHRC East of England research programme .
There is increasing evidence that involving patients and the public can improve research in several ways such as: in recruiting people to take part in research, in making research procedures more ethically sensitive, and in making research more useful to a wider variety of people. There is also strong public and policy support for research to include PPI. However, for PPI to happen, different groups of people need to work together.
During ‘IMPRESS’ we aimed to find out: the different ways patients and public are involved in research, look at any problems, benefits and costs, and work out the best ways for them to be part of research projects.
The study team did this by exploring and building on the experiences of researchers and PPI members taking part in research projects within a large programme (the CLAHRC East of England). The IMPRESS study was an ‘action research’ project.
Action Research is: a type of research used to bring about improvements or practical changes. A group of people (e.g. researchers and PPI members) who know about a problem (e.g. getting PPI to work well) work together to develop an idea about how to solve it. They then test this idea in practice and gain feedback on their experiences from the people who take part in testing. They may also identify further ideas and actions to test. This cycle of developing ideas and testing them in practice is repeated until the problem has been solved.
Each IMPRESS action research cycle was made up of several steps: first, finding out some facts, then planning a course of action, then taking action, then evaluating the action and then begin the process again.
For the study, the IMPRESS team did the following:
- Found out what PPI is in each project in the CLAHRC by emailing a questionnaire to each project’s lead researcher.
- Analysed the results returned then share them with people who support PPI in the East of England (within and beyond the CLAHRC). Based on what people said were the most relevant issues, we then chose and invited 8-10 projects to become ‘case study projects’. These included different types of research and different levels of PPI contributions.
- Explored PPI in each case study project in more depth, by interviewing both researchers and PPI representatives and asking them to keep a record of the cost (both financial and time) of using PPI in their projects.
- Organised focus groups to explore views on some issues in greater depth with more people. There were separate focus groups for researchers and PPI representatives.
- Built an Action Plan. We looked at all the information we had collected and then listed ways we can improve Patient and Public Involvement in the CLAHRC. We then invited people to share their views of this list and agree a shared Action Plan of how to improve PPI across the CLAHRC East of England.
Key findings and outputs:
The Action Plan from the study was made up of these ten recommendations:
- More training, education, advice and discussion around PPI
- More informal networking and cross-theme discussion on PPI sources and networks
- Support provided for PPI initiation before and maintenance between projects
- Plan PPI structures, purpose and roles in relation to project timelines
- Construct a CLAHRC EoE PPI resource handbook
- Greater transparency and sharing of project reports with PPI representatives
- CLAHRC to be flexibly responsive to changes in PPI plan within a project’s timescale
- Mobilise PPI for translating research into practice
- Timely and appropriate feedback given to PPI representatives
- Emphasise the evaluation of PPI within projects beyond existing use of KPI tool
The IMPRESS Project Team Members have produced 3 shorts films about PPI on IMPRESS, the project itself and the key findings. These films can be found on our YouTube page:
For a ‘BITE’ sized summary of the research, please see: IMPRESS BITE May 2016
For more information about this study, please see here