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Patient and Public Involvement

You are here: Home > Getting involved with research > Patient and public involvement (PPI) Researcher Guidance > Section 3 – PPI and the Research Pathway
PPI Researcher Guidance

Section 3 – PPI and the Research Pathway


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

The PPI research cycle model

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PPI opportunities in the research pathway

Research stageWhat 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 prioritisationIdentify research topics and raise the need for new research.

Collaborate with researchers to identify topics for research.

Inform research priorities through lived experience.

Ask key questions about the need for and benefits to patients.  
Discussions with existing reference groups and networks.

Holding a workshop or event for brainstorming.

Attending meetings held by service user groups.

Peer group interviews.

Surveys and interviews.

Asking support organisations about the feedback they get from people who use services.

Using 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)  

Supporting PPI in your grant application
The NIHR Research Design Service (RDS) provides design and methodological support to researchers applying for funding from NIHR and other national funding programmes. Help with planning and developing a PPI strategy for your grant application is available via RDS South Central which covers Oxford.  They have a small amount of funding for pre-submission PPI activities. To get PPI advice submit a request for support here.
2. Designing and managing researchSupport 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 outcomesBring a wider perspective to the communication strategy.

Identify new and additional ways 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 findings.

Consider 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 projectCollaborate 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:  ced@nihr.ac.uk  

Recording impact

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.

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Case studies across the research pathway

Research Group, department or funding programmeDescriptionLink
Oxford BRC10 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 Centre PPI Group, Oxford BRCThe 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.  

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< Previous: Section 2 – What is Patient and Public Involvement?

Next: Section 4 – PPI in Practice >

Post an opportunity for patient and public involvement

PPI RESEARCHER GUIDANCE

  • Section 1 – Foreword and Introduction
    • Foreword by Professor Gavin Screaton
    • Introduction
  • Section 2 – What is Patient and Public Involvement?
    • Patient and public involvement, engagement and participation definitions
    • Why involve the public in research?
    • Funding body requirements: NIHR, UKRI and Wellcome
    • Academic literature requirements
    • PPI strategies
    • Standards and best practice
    • Why patients and the public want to get involved
    • Involving people from diverse and ‘under-served’ groups
    • Ethical approval
    • Costing and funding patient and public involvement
  • Section 3 – PPI and the Research Pathway
    • The research cycle
    • PPI opportunities in the research pathway
    • Case studies across the research pathway
  • Section 4 – PPI in Practice
    • Recruiting patients and the public
      • Deciding who to involve
      • PPI groups and recruitment websites
      • Advertising for PPI contributors
      • Where to advertise
      • Template for advertisement for PPI contributor
    • Communicating with patients and the public
      • Writing in plain English
      • Social Media
    • Support and guidance for patients and the public
      • Role descriptions and interviews
      • Templates for working agreements
      • Induction and welcomes
      • Training and support for PPI contributors
      • Thanking and giving feedback to PPI contributors
      • Payment for PPI contributors
      • Benefits advice and support
    • Guidance for meetings and other PPI activities
      • Guidance for online meetings
      • Guidance for in-person meetings
      • Terms of Reference
      • Consent to share personal information
  • Section 5 – PPI Resources for Researchers
    • PPI leads and coordinators
    • PPI groups, Oxford
    • Training and support
    • Recruitment websites
    • Organisations supporting PPI in research, nationally
    • Funding opportunities supporting PPI in research

Public engagement for researchers

  • Public engagement for researchers
    • Public Engagement Case Study – Breathe Oxford at the Royal Society Summer Science Exhibition
    • Public Engagement Case Study – GenExpressID study: working with a patient interest group

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