Patient and Public Involvement and Engagement Strategy
(2024-2029)
Our vision and priorities for collaborative working between researchers, industry, and those with lived experience.
Who is this strategy for and what is its purpose?
This strategy outlines how we intend to deliver and measure the impact of our PPIE work. It also provides information about our objectives and delivery plan. This strategy is intended to be shared with current and future collaborators from research, industry, clinical practice and those with lived experience of brain and spinal injury. More than 350,000 people are admitted to hospital every year in the UK with an acquired brain injury. This includes 158,000 with a traumatic brain injury and 137,000 with stroke. There are around 2,500 new spinal cord injuries every year in the UK. New innovations and treatments are needed to improve outcomes for these people. The Brain Injury HRC is one of fourteen nationally designated sites and is part of the HRC Network. This Network supports co-ordination across external agencies, dissemination of support and information, and community engagement. Involvement: - Where members of the public are actively involved in research projects and/or organisations. Examples of public involvement are: Engagement - Where information and knowledge about research is given and shared at public events. Examples of engagement are: Embedding of PPIE will be done via clear aims and SMART objectives. These will be prevalent in all aspects of our activities and at every point of the research cycle. These include:
Context
What is Public Involvement and Engagement?
The Brain Injury HRC’s (2024-2029) approach to PPIE extends the principles established by the Brain Injury Healthcare Technology Co-operative (2013-2017) and MedTech Co-operative (2018-2024).
Values and Principles for involvement and engagement
The Brain Injury HRC puts patient experience at the heart of all our work. The voice of lived experience will inform every stage of the research cycle to make sure that the design and development of health technologies meet patient needs and improves outcomes.
By building a large diverse patient group on the RHITE platform, we will be able to draw on the personal lived experience of patients and careers to best inform our work. The diversity of the group we will be monitored in line with the Research Inclusion Strategy and aims to be representative of the communities affected by brain and spinal injury.
We will work according to the UK National standards for PPI to embed a meaningful approach. Our engagement work will have clearly defined messages and targeted audiences appropriate to each project.
We will use the Equity Compass tool (image above) to reflect on our engagement practice to monitor Equality, Diversity and Inclusion and to make our work accessible.
Governance
The development and delivery of the strategy will be monitored by the Patient Oversight Committee (POC).
The POC will actively encourage the involvement of patients, carers, members of the public, and charities and community representation in all aspects and stages of our work programme, including as is appropriate:
- Contributing to the design PPIE programme,
- Management and prioritisation of the work programme,
- Planning and development of specific topics,
- Research activity,
- Interpretation of research findings as appropriate,
- Peer review,
- Monitoring progress,
- Evaluating and reviewing actual versus expected outcomes.
If you want to find out more about the POC, or other ways you can be involved, please contact us on info@brainhrc.org.
The HRC team
For information about us, please visit our website: https://hrc-braininjury.nihr.ac.uk/#about
The core team is ably supported by the POC:
- Robert Runcie; Chair of the POC
- Mrs Kavita Basi; Brain Haemorrhage survivor, Board of trustees Brain & Spine Foundation Charity.
- Lay members connected to partner organisations, see details below.
Our partners and collaborators
The HRC works closely with regional and national partners across the UK. Representatives from these are involved in the development and delivery of the Involvement and Engagement activities described in the strategy.
For a list of our collaborators: https://brainhrc.org/strategic-partners
Strategic Collaborators are listed: https://hrc-braininjury.nihr.ac.uk/#collab
Our aims and SMART objectives
The strategy has key aims, each with its own SMART objectives. The aims were developed by the POC with support from the core team. They provide measurable outcomes, with milestones to monitor the impact and success ande strategy. The objectives will be reviewed and updated every 12 months.
We will collaborate with partners and third sector organisations to reach under-represented groups to improve diversity and inclusion in all our work.
We will use the Patient Involvement in Research Impact Toolkit (PIRIT) to track and record learnings from our Involvement and Engagement activity.
Aim 1: Support involvement in Brain Injury HRC programmes through a diverse and Inclusive panel of people with lived experience of brain and spinal injury.
Smart Objectives:
| Objective | Time period | Monitoring Information |
|---|---|---|
| Recruit additional members to POC, through our strategic partners. | Short - by Nov 2024. | Record invitations, membership, and areas of interest and experience. |
| Recruit 100 patients and careers to RHITE by linking with partners and third sector spinal and brain injury organisations. | Short - by March 2025. | Periodically review numbers registered on RHITE. |
| Ask all research groups to clarify experience required from patients/carers and to be clear about their research needs. | Short – by March 2025. | Issue and collate researcher requirement forms. Monitor number received. |
| Develop an inclusive interactive patient portal to increase engagement with the work of the HRC. | Short - by March 2025. | Record date of platform implementation and track user engagement dates. |
| Run 6 outreach focus groups. | Short - by March 2025. | Use the PIRIT tracking tool to record events and diversity of attendees. |
| Hold monthly meetings of the POC to monitor and inform PPIE activity. | Short - by March 2025. | Record meetings and actions on our internal database (the Hub). |
| Connect with underrepresented communities to encourage participation. | Medium - by Mar 2026. | Use PIRIT to record the names of communities/groups contacted. Monitor RHITE sign up after contact with these groups. |
| Review and update RHITE membership. | Long - from Mar 2027. | Reporting of numbers and engagement of participants every 6 months. |
Aim 2: Use insight of unmet need from those with lived experience to guide innovation and development of new technologies.
Smart Objectives:
| Objective | Time period | Monitoring Information |
|---|---|---|
| Provide patient involvement in 2 Technology evaluation Programmes (TEPs). | Short - by Mar 2025. | Record events and participants in the PIRIT tracking tool. |
| Develop a comprehensive Directory of Unmet Needs (DUN) through consultation with patient groups. | Short - by April 2025. | Review submissions, keep record of DUN. |
| Provide patient involvement in 5 Technology Assessment Programmes (TAPs). | Medium – by March 2026. | Record events and participants in the PIRIT tracking tool. |
| Use PPIE to inform responses to grant calls on diagnostic pathways. | Medium – by March 2026. | Record outcomes of enquiries from research groups. |
| Record impact of PPI. | Medium - Long by Mar 2027. | Researcher survey capture changes as a result of PPIE, 6 months after initial work. |
Aim 3: Raise awareness of brain and spinal injury, their impacts, and the role of research and technology in prevention, assessment and treatment.
Smart Objectives:
| Objective | Time period | Monitoring Information |
|---|---|---|
| Identify potential engagement opportunities and activity. | Short - by Oct 2024. | Produce and share list with partners. |
| Identify key messages and audiences in discussion with partners and POC. | Short - by Jan 2025. | Produce messages and record in update strategy. |
| Develop engagement to build understanding of sensitivity and specificity. | Medium- by Jan 2027. | Record delivery of engagement and audiences. |
| Form a consensus on advocacy for change with those with lived experience to inform public engagement messages. | Medium – by March 2027. | Record PPI sessions in the PIRIT tracking tool. |
| Present work on all themes at public facing events twice a year. | Long - from Jan 2025. | Record events in an engagement tracking tool. Include audience metrics and response. |
Aim 4: Ensure public collaborators are rewarded fairly and recognised.
Smart Objectives:
| Objective | Time period | Monitoring Information |
|---|---|---|
| Establish a system of payment via cheque or vouchers. | Short - by Nov 2024. | Record rates and mechanism. |
| Conduct a survey to find preferences for payment method and recognition. | Short- by Dec 2024. | Produce short report of responses. |
| Set clear reimbursement rates for each kind of involvement activity and update these in line with NIHR national standards. | Short - by Jan 2025. | Monitor payments to ensure standards are met. |
| Encourage partners to acknowledge lay contributions through authorship or public notice where appropriate. | Medium - by Mar 2025. | Add section to research team follow up to report to monitor acknowledgments. |
Example PPI questions
- What level of diagnostic accuracy is acceptable to patients and carers?
- When should patients and career be approached about research?
- How should patient information about research be provided?
- Do levels of acceptance to new treatments and technologies vary between different communities?
Evaluating our impact
We will measure our success through the clear aims and objectives above set out above. We will annually review and update the SMART objectives in collaboration with the POC.
All our involvement activity will be tracked and reviewed. The Patient Involvement in Research Tracking Tool (PIRIT) will be used to monitor involvement and impact against the needs of research and industry teams ensure that our work is in line with the UK Standards for Patient Involvement. To facilitate this, we have aligned our involvement database (RHITE) with PIRIT.
We will follow up all research groups we work with to see how involvement has informed their work and how well PPI has remained embedded in their projects. We will closely monitor the diversity of involved members and continually work to improve this. We will review our methodologies for involvement and measure success against the UK for Patient Involvement
Our engagement projects will have clear audiences and messages. We will conduct short evaluations of public and schools’ engagement to see if these have been achieved.
How this strategy was developed
The strategy was developed with reference to the NIHR Strategic Commitments for Public Partnerships 2025-30. The development of the aims and objectives were subject to review by public contributors. The strategy was overseen and approved by the POC.
The strategy and SMART objectives will be subject to short, medium, and long term review. The POC will have oversight of this to monitor progress.
Words and acronyms used in this document
| DUN | Directory of Unmet needs. This list is developed with patient involvement to identify areas where new technologies can make a meaningful contribution to prevention, treatment and recovery from injury. |
| Engagement | Ways in which research can be shared with and influenced by the public in a two-way process. Engagement encourages researchers to listen and interact with the general public, for example, via science festivals, open days, media coverage. |
| Involvement | Also known as PPI or public involvement. An active partnership between patients, the public and researchers in the research process, rather than the use of people as ‘subjects’ of research. For example, this might be working with research funders to prioritise research or offering advice as members of a project steering group. The term ‘public’ includes individuals (patients, potential patients, carers, and people who use health and social care services) as well as organisations that represent people who use services. |
| Participation | Taking part in a research project as a subject of research. Participants may try new innovations, medicines or placebos in order to test their efficacy in controlled trials. |
| POC | Public oversight committee. The group that led the development of this strategy and oversees its implementation. The group is chaired by and made up of people with lived experience of brain and spinal injury, supported by the Patient and Public Involvement and Engagement Lead. |
| RHITE | Register for Healthcare Involvement and Technology Evaluation. A database of people interested in becoming involved in research projects or acting as participants in studies. The database collects demographic information about people to monitor inclusivity and diversity in our panels. |
| SMART objectives | A method of describing activities in order to measure success of delivery. SMART objectives are Specific, Measurable. Achievable, Relevant and Time-bound. |
| TAP | Technology Assessment Programme. The programme run by the HRC assesses the feasibility of ideas through review by a clinical panel. An involvement group will also review proposals to check for suitability and how well they work towards unmet needs. |
| TEP | Technology Evaluation Programme. This extended programme run by the HRC will set up trials and use involvement to focus research questions. |
Acknowledgements
In addition to the POC, thanks to the people who reviewed and assisted with the development of this strategy:
- Dr. Amanda Stanks- PPIE Lead, NIHR Cambridge BRC
- Mr Greg Dean- Public contributor
- Mr Jeremy Dearling- Public contributor