If you would like any support in developing, delivering or evaluating your PPI activities please contact the BRC’s Patient and Public Involvement Manager.
How does patient and public involvement help researchers?
A key question for researchers is “What will involvement do for me?”. Documented benefits include:
- Stimulate new ideas
- Fill gaps in your knowledge
- Challenge your assumptions and encourage you to reconsider what is important
- Help you to identify and avoid problems you would not otherwise have anticipated
- Deepen your understanding of the issues of significance to patients/the public
- Give you confidence and motivation
From Changing what researchers ‘think and do’: Is this how involvement impacts on research? in Research for All 1 (1), 158-67, Staley K. (2017).
Here is our Informatics and Digital Health theme lead Professor Simon Lovestone talking to Dementia Reporters from Dementia Research on ‘people with dementia being co-researchers’:
Helping you plan your PPI project
The PPI theme offers support for your PPI activities, and can advise on designing accessible and engaging activities. .
Our PPI Project Planning Form can help you plan your activity and share it with our PPI Contributor Pool.
Our Introduction to PPI for research staff includes links to best practice and ‘Ten tips to get you started’.
Four case study examples of recent PPI projects are included in this report from the PPI Theme’s 2019/20 Small Grants Scheme.
If you are organising digital PPI activities it is important to use technologies that are easily accessible and to provide clear guidance on how any new technologies work.
We can provide direct support with developing or delivering your PPI. Just get in touch with our PPI Manager, to discuss your plans or needs: PPI.OHBRC@oxfordhealth.nhs.uk
Researchers Toolkit
Explore events, opportunities, funding, research practice and training, translation and innovation and much more with the researchers toolkit published on the Medical Sciences Division research web page.
Patient and Public Involvement Research Meetings
The PPI Research Meetings are an exciting opportunity for you to receive early feedback on your research from a group of patients, carers and public members with an interest in mental health and dementia.
These meetings take place every two months. Feedback from researchers that have presented at previous meetings include:
“ I found the entire day useful. I was able to gain insight into public perception surrounding depression, dementia and pharmacological interventions. This has changed the idea of my future work and I think for the better. ”
“ Thank you for doing all the arrangements and set up. I didn’t have to consider any of these parts which I know is no small job. It just made the whole thing so easy for me a researcher to use PPI as a resource for grant development. ”
The PPI Theme liaises with the PPI contributors, organises the venue and catering, and reimburses the volunteers’ expenses and time.
Patient and Public Involvement Groups
The following PPI groups are established and can provide support for your research.
- Patients and Research Group (PAR)
The BRC’s Patients and Research Group (PAR) brings together patients, carers and members of the public who are interested in being involved in mental health and dementia research.
We run regular PPI Research Meetings where you can present your project to a panel of PAR members.
We also send regular emails to the group sharing current PPI opportunities.
- Friends of OxDARE
The Friends of OxDARE enables public members to register their interest in dementia and ageing research. A regular newsletter is sent to Friends of OxDARE sharing the latest research, news and PPI opportunities.
You can contact the OxDARE team to find out more about sharing your dementia or ageing research PPI opportunity at oxdare@psych.ox.ac.uk .
- ENGAGE
ENGAGE is a group of research participants from the Oxford cognitive health Clinical Research Facility. They can provide Patient and Public Involvement input on your research including how to create clear information for potential research participants. They can share their perspective to help you consider how to design your study and identify potential issues. ENGAGE meets every two months.
- NeurOx Young People’s Advisory Group (YPAG)
The BRC is committed to ensuring that young people have a voice in mental health research and that we listen to a diverse representation of young people’s views to build an evidence base that is acceptable and authentic to the lives of young people.
The NeurOx YPAG is a group of young people (between 14 and 18 years old) who work with the Neuroscience, Ethics and Society (NEUROSEC) team to help develop methods for working with young people to better understand their views.
- PPI Early Psychosis Research Group
The Early Psychosis Research Group has set up a patient and public involvement group to provide PPI expertise throughout all of their group’s studies. It involves a group comprising young people with psychosis, some people who have recovered from psychosis, and carers.
You can also post PPI opportunities on patientsactiveinresearch.org.uk which has a Thames Valley reach, or peopleinresearch.org/ which has a national reach.
PPI Payments
It is best practice to offer reimbursement for time, and essential to provide expenses for those getting involved.
We have developed a Payment Policy in keeping with NIHR guidance and in line with other local agencies – you can download the Policy for Researchers, and the accompanying Public Version.
The NIHR PPI payment guidance provides advice on budgeting for involvement, payment rates and information about PPI payments and welfare benefits.
PPI Training
We partner with local health and research organisations to deliver a range of PPI related training.
Our next training sessions are:
- Future dates will be included here
Equality, Diversity & Inclusion
The NIHR Clinical Research Network have produced a road map of guidance and initiatives to help include under-served groups in research as part of the INCLUDE project. The road map highlights the importance of involving people from under-served groups in the design and development of research.
The INCLUDE project have also developed an online course , hosted on NIHR Learn, to help people involved in research think about ways of making health research more inclusive and to ensure under-served groups are more fairly represented in health research.
Other useful resources include Being Inclusive in Public Involvement in Health Research and Ensuring ethnic diversity in COVID-19 research .
If you would like to discuss approaches for addressing equality, diversity and inclusion in your research please get in touch with PPI.OHBRC@oxfordhealth.nhs.uk .
Diversity Data Questions
As part of the ‘Evidence-led diversity and inclusion’ theme of the NIHR’s Equality, Diversity and Inclusion strategy 2022-27, we have committed to:
– Expand the diversity data collection approach to include all protected characteristics.
– Create an NIHR standard for diversity data which will cover data governance and when and how to ask diversity monitoring questions.
You can contact the NIHR research inclusion team for further support:researchinclusion@nihr.ac.uk
User guidance for the diversity data questions
The following information provides an overview of the suggested text for questions and responses for collecting data across the 9 protected characteristics outlined by the Equality Act 2010, and socio-economic status.
The guidance has been informed by various sources including 2021 Census, the EDIS DAISY guidance, Advance HE guidance and the draft Race Disparity Unit’s Standards for ethnicity data.
For those working outside of NIHR CCs, we recognise that there may be reasons, related to your institutional context, data systems or requirements (etc), that mean you choose to deviate from the questions and responses we have suggested in this guide. However if you use any of the questions in this guide, please follow the user guidance.
User guidance for the diversity data questions
It is recommended that questions and response text in this guidance are used verbatim.
The order of responses should be presented as in this guidance.
A ‘Prefer not to say’ option should always be provided, and this option should be provided as the final response option.
Prior to collecting this data you should ensure appropriate information governance processes are in place. Data use, storage and sharing statements should be made clear prior to collecting data.
Clear communications outlining why you are collecting this data and how it will be used can help develop trust and improve response rates.
Please find an example of a Diversity Data questionnaire which you can download for use in your project.
Clear Communication
Clear communication and plain language is vital for building shared understanding in research and supporting effective involvement. Below are some useful resources:
National Public Involvement Standards: Standard 4 Communication
INVOLVE Plain English Summaries
Healthwatch Bucks Making health and social care information easier to understand
Other useful resources
The PPI theme has worked with our Patient and Research Group and research staff to develop at ‘Introduction to patient and public involvement for researcher staff‘ Guide.
Involvement Matters is a free monthly bulletin of opportunities, training, events and information for the public to get involved in research, commissioning or health service provision in the Thames Valley area. You can sign up to receive it here.
The following resources are available to inform and support your patient and public involvement:
- A set of six UK Standards for Public Involvement describing what good public involvement looks like, designed to encourage self reflection and learning.
- The NIHR Learning for Involvement website hosts a range of resources covering managing involvement, co-production and running meetings and events. Publications include
- Guidance on public co-applicants in research
- Guidance on being inclusive in public involvement
- Guidance for PPI payments
- The NIHR Research Design Service provides free advice to researchers who are developing proposals for national, peer-reviewed funding competitions for applied health or social care research, including on Patient and Public Involvement. It is best to register for support at a very early stage of your project design in order to gain most benefit.
- Co-production podcasts – a series of six podcasts created by the NIHR Centre for Engagement and Dissemination and the Research Design Service South East
- Guidance on digital involvement includes:
- Online Engagement: a guide to creating and running virtual meetings (National Co-ordinating Centre for Public Engagement)
- How do I hold online PPI meetings? (NIHR School for Primary Care Research)
- A practical guide to patient and public involvement in lab-based research, published December 2020 by Parkinson’s UK, Alzheimer’s Society and University College London Hospitals Biomedical Research Centre.
- COVID-19 PPIE Hub created by the NIHR Clinical Research Network and including resources to support patient and public involvement and engagement around COVID-19 research.
- A project using art to engage with people not often involved in research development and production, shared by the School of Primary Care in July 2020.
- The NIHR Oxford Biomedical Research Centre and the MRC Network of Hubs for Trials Methodology Research have published PIRRIST to help plan effective PPI to enhance the recruitment and retention of trial participants.
- Guidance for Researchers: Feedback is a tool providing advice on the best ways to ensure PPI contributors are kept informed of research progress and their input is formally acknowledged, published by CLAHRC East of England.
- The James Lind Alliance (JLA) offers a process to bring patients, carers and healthcare professionals together in particular healthcare conditions or topics, to identify and prioritise issues that are most important to them. A number of Priority Setting Partnerships (PSPs) have taken place, including for bipolar disorder, depression and dementia.
- THIS Institute report on Involving patients and the public in research (July 2019).
- PPI is increasingly essential in reporting research. The BMJ promotes patient partnerships, and you can read about GRIPP2 guidance for reporting PPI in health and social care research.
- This BMJ Opinion Piece on PPI in basic science research makes useful reading.
- NIHR School for Primary Care Research blog on social prescribing and PPI (July 2019).
