Section 3 sub-sections
The research cycle
The research process is often described as a ‘cycle’ or ‘pathway’. The research cycle model below, describes PPI at eight stages. The reality is more complex, but these models are a helpful starting point for PPI contributors to understand how research projects work, and where they as contributors fit into the research.
There is a clear expectation from the NIHR and other major funders that involvement should happen throughout the research pathway and that it will be evidenced in monitoring reports and research outcomes. Depending on the research project, every stage of the research pathway can potentially benefit from PPI. The project may need more PPI input at various stages work done in one stage can be used in another part of the pathway. Case studies from researchers, (see below) show PPI in practice across the pathway. . PPI is also an iterative process, influencing the research work, and changing its outcomes and impacts.
The same PPI contributors do not need to be included at every stage, some may be more suited or interested in specific stages. PPI is best done where it is meaningful, and this may not be the same extent at every stage. It needs to be done where it can make a difference otherwise it appears tokenistic. Be prepared to explain how this decision was made to funders.
Key messages from current researchers are:
- Be creative and pragmatic.
- Flexibility is important too
- It is not always possible to insist on an established process
- Every study will be different
- There is no one way to do PPI
“It wasn’t a case of ‘us’ versus ‘them’. We all worked together; clinicians, academics, our industry partners (Qbtech) and PPI. That was the real success of the trial.”(Source: Lead Researcher – Aqua Study)
The research cycle model
PPI opportunities in the research pathway
|Research stage||What they can do (Focus and benefits of PPI)||How they can do it (Examples of roles and tasks)||Useful references and top tips|
|1. Identification and prioritisation||Identify research topics and raise the need for new research Collaborate with researchers to identify topics for researchInform research priorities through lived experience Ask key questions about the need for and benefits to patients||Discussions with existing reference groups and networksHolding a workshop or event for brainstormingAttending meetings held by service user groupsPeer group interviewsSurveys and interviewsAsking support organisations about the feedback they get from people who use servicesUsing an independent facilitator minimizes the effect of a researcher on the agenda||James Lind Alliance – The James Lind Alliance | James Lind Alliance (nihr.ac.uk)|
|2. Designing and managing research||Support the application to demonstrate the topic is relevant and important to patients Review research methods for ethical concerns and practical considerations Identify opportunities for PPI and suggest ways to increase the diversity of public views Inform the design of the research study such as helping to define outcome measures that are important to patients Ensure the lay summary is accessible Raise awareness about costs of PPI for the public Comment on the accessibility of project documentation||Be a named PPI contributor Become a co-applicant Take the role of PPI Lead Review the lay summary Be part of a PPI advisory group for the study Review and comment on proposed questionnaires and data collection methods Translate and interpret participant-facing documents (information sheets, consent forms and lay summaries) to ensure accessibility to a non-academic audience||Specific advice for effectively involving the public in managing your research https://www.nihr.ac.uk/researchers/manage-your-funding/manage-your-project/ Specific advice for involvement in clinical trials – https://www.invo.org.uk/wpcontent/uploads/2012/04/INVOLVEpublicinvolvementinclinicaltrialsBriefingnotes2012.pdf|
|3. Carry out the research study||Assist in creating a recruitment strategy e.g., cost implications, time, confidentiality Ensure information for participants is acceptable and appropriate Identify potential participants and sites Bring skills and experience to support researchers in their data collection Be part of the PPI reporting cycle to funders and participants and other PPI contributors Support the research team in developing themes from data from a different perspective Help check the validity of the conclusions from a public perspective Develop progress reports or newsletters to keep people informed throughout the project Highlight findings that are more relevant to the public||Membership of project team Being part of the project governance e.g., membership of a Steering Committee and attending team meetings Be members of a patient advisory group Produce public facing summaries as feedback for participants Act as co-researchers Train other co-researchers Co-lead focus groups||Members of the public can also assist with library-based research and interpreting literature from a public perspective. This may be very useful for systematic review projects – Find out more about public involvement in systematic reviews.|
|4. Dissemination of research findings and outcomes||Bring a wider perspective to the communication strategy Identify new and additional ways and to reach the stakeholders and audiences||Co-author blogs, vlogs and journals about the study on the public involvement Jointly author and present the findings with researchers, participants and stakeholders such as patients, support groups and service providers Distribute results within their networks and forums||Remember to include funding for PPI to advise about disseminating the findings in your grant application Consider if you will need to allocate funding for developing and printing summaries and for postage Discussing your results with other patients can be a useful way to engage other members of the public for future involvement|
|5. Implementation – research into practice||Increase the likelihood that results of research are implemented by adding validity to the findingsConsider the practical implementation of sharing findings – e.g., geographical locations, care pathways, commissioning cycles||Develop patient information for new services/ interventions within hospitals, GP surgeries Help to develop training manuals for health professionals and/or other patients Help to influence key agencies and policy makers||PPI contributors can be great advocates for making changes happen|
|6. Evaluate and reflect on the research project||Collaborate with researchers to evaluate the research process Reflect on their role and what has been learnt and can be taken forward for additional projects||Publish the outcomes from your PPI, especially for more creative methods||One way to make others aware of the impact from your public involvement is to contact the NIHR Centre for Engagement and Dissemination to put an article in an NIHR newsletter: firstname.lastname@example.org|
There are tools to assist in recording the impact of PPI.
Public Involvement Impact Assessment Framework (2014) has been produced to help researchers assess the impacts of involving members of the public in their research in diverse fields from health care to local history.
Guidance for Reporting Involvement of Patients and Public – The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting.
Case studies across the research pathway
|Research Group, department or funding programme||Description||Link|
|Oxford BRC||10 case studies on 10 themes.||https://oxfordbrc.nihr.ac.uk/ppi/ppi-case-studies/|
|Diversity in Research Group, Oxford BRC||Public contributors encourage researchers to contact them to improve the diversity of their research.||https://oxfordbrc.nihr.ac.uk/getting-involved-with-the-oxford-biomedical-research-centre|
|NDORMS (Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences)||Surgical Interventions Trials Unit in NDORMS used PPI contributors, including children and young people, to design and run successful clinical trials. There have been successful outcomes for patients, but challenges too. Talk by Cushla Cooper.||Patient and Public Involvement in Surgical Research – Cushla Cooper – YouTube|
|Oxford Blood Group, Oxford BRC||PPI contributors talk about their involvement as patients, encourage people to be involved and show value of PPI.||Oxford Blood Group – NIHR Oxford Biomedical Research Centre|
|Oxford Health BRC||Introduction to PPI at Oxford Health, with a PPI contributor and researcher from the Department of Psychiatry.||https://www.youtube.com/watch?v=86QU3Nq98PE&t=252s –|
|Oxford Vaccine Group, Oxford BRC||The Oxford Vaccine Centre, Jenner Institute staff and a PPI contributor talk about the role of PPI and also the impact on vaccine hesitancy.||Oxford Vaccine Centre PPI video – YouTube|
|Allied Research Collaboration – Oxford and Thames Valley||Article on PPI contributors working on research prioritisation for obesity and weight related research, the ARC POWER study.||https://www.arc-oxtv.nihr.ac.uk/research/Priorities-in-Obesity-and-Weight-related-Research-The-POWER-Survey.|
Next: Section 4 – PPI in Practice >