PPIE Innovation Grants 2022 - 2023
Patient and Public Involvement and Engagement (PPIE) Innovation Grants are awarded to teams.
Summary of projects for 2022 - 2023
Below is a summary of the projects that were awarded funding for this cycle. Taking place, we have:
16 projects, reaching 300 people
12 leaflets and posters that will be produced
6 events that will take place
7 champions
1 impact project
3 websites that will be made more accessible
5 patient videos that will be made
Please find a greater breakdown of each project below.
To establish a group of community research champions in under-represented communities, through events with The Zainab Project
The project is run by Dr Emily Clarke, GP & Rash Ibrahim, of The Zainab Project
Aims of project:
Two community events, supported by five different academic professionals
To bring together people who were at different stages of the asylum process - young, old, men and women (first event was mixed and second was only women)
To use translated health information from Doctors of the World as basis of workshop - they are an independent humanitarian movement working at home and abroad to empower excluded people to access healthcare
To explore the meaning of health research, why it is important and starting to break down barriers between the formality of academics and academic institutions and marginalised communities
Outcomes of project:
Built a trusted relationship with The Zainab Project
70 asylum seekers, refugees and vulnerable migrants took part in research
Outcomes of project:
Better understanding of asylum seekers and refugees, how they access health and their understanding of health research
Produced powerful visual poster of what it means to be an asylum seeker in the UK, and another poster highlighting the successes of the project
These posters will be used for the advocacy work of both UEA City of Sanctuary work, and by The Zainab Project
Overall feedback was highly positive - produced a visual image to summarise how people felt about the events
Next steps:
Further funding from REND to continue project has been awarded - several more workshops are planned
Impact evaluation & how to measure wellbeing
Planning PhD application with the ideas from the events as the start of co-producing an application
To learn from PRES feedback and improve the way we engage with and provide research to babies, children and young people
The project is run by Katherine Vale, Cambridgeshire Community Services NHS Trust
Aims of project:
Trial recruitment and retention strategies for young children to the Okko Space Academy study based on local PRES feedback
Improve PPIE for other underserved groups, e.g. women of childbearing age, ethnic minority groups in Luton and Bedford, people living in remote areas, people in full-time employment, under-served due to health status e.g. visually impaired
To secure additional funding for parking costs/travel assistance, refreshments, colouring pens/pencils/ craft activities/stickers (to support children to take part in PRES and receive accessible study information)
To gain an additional member of the team for the clinic on Saturday, in order to support PPIE engagement, communication with the children and their caregivers, and additional time planning logistics of the strategies suggested above
Outcomes of project:
PRES feedback for Q4/1 will be reviewed when available
We will ask patients if they would like to share their experience and link them into our patient experience team, and the CRN East of England Communications team
We hope that we will see an increase in recruitment from more diverse communities as a result of these strategies
Volunteer role created and advertised
Outcomes will be further identified once the study has restarted recruitment (temporarily paused)
Next steps:
Outcomes will be further identified once the study has restarted recruitment (temporarily paused)
To identify patients in underserved groups, filtering via demographic factors, social-economic factors and health status, and where eligible, approach them to participate in OCEANIC-AF
The project is run by Dr Joshua Leader, East & North Hertfordshire NHS Foundation Trust
Aims of project:
To generate a report from the anticoagulation database, for patients potentially eligible for OCEANIC-AF study (admitted within the past 12 months, with non-valvular atrial fibrillation)
To approach all eligible patients - additional time and effort to be taken to go through consent process in a more inclusive way
To conduct a patient survey via telephone to understand barriers to participation
To contact five local GP surgeries to help widen access and participation for greater diversity and inclusion, and to ask them to advertise a leaflet provided by BAYER
Outcomes of project:
Gained a better understanding of the major barriers to research - lack of awareness of research identified as key barrier
Better understanding of barriers to research - lack of awareness of research identified as significant barrier
Database unable to filter demographic variables - focused on widening access in the community (targeting certain group of individuals is a form of recruitment bias)
25 patients approached/counselled on study, 25 failed to meet inclusion criteria during pre-screening, 11 agreed to participate in OCEANIC AF, 7 enrolled thus far, baseline visits scheduled for the rest
All individuals contacted reported that research was not advertised in their GP surgery and that they had never been approached to participate in research before
A physical presence is the most effective way to engage/recruit under-served people
The study only had a small leaflet - as result of feedback from this project, the study team is producing a poster
Next steps:
Continue to approach individuals and widen access to commercial research - implement strategies to address this (more funding will need to be sought)
To increase PPIE in Rheumatology, focussing on EDI and reaching out to rural communities
Sam Wright, Cambridge University Hospitals NHS Foundation Trust
Aims of project:
To set up PPIE group in the community for Rheumatology research - fundraising and encouraging engagement with service users
Developing and distribute posters & leaflets to promote PPIE groups to patients
Finding accommodation in the community to meet the PPIE team to improve local engagement
To look at opportunities for our PPIE members to have access to the internet, if unable to access due to costs
Outcomes of project:
An active PPIE group: to champion research, reach under-served communities, give people a voice, help with recruitment, raise profile in community, enable Rheumatology Research Unit (RRU) to access larger funding streams to enable more community clinics, and thus enable more people to access research
Roadshow event: highlighted the importance of EDI and what research is all about, including terms and jargon, gave out flyers about the new CARE (Cambridge Arthritis Research Endeavour) website that launches soon
The CARE website provides a form to register their interest in joining the PPIE group, and an advert for the 'power of participant stories' as directed by CRN East of England communications team
Next steps:
The ultimate goal is to provide a venue for patients from diverse communities to be involved in supporting RRU projects (such as the CARE roadshow), to give academics access to PPIE, and to use EDI work to assess demographic areas which need more support
To gain support from the Trustees to support PPIE on a rolling basis, including the CARE agenda
Reaching out with the refugee/asylum-seeking 'community' and delivering health and wellbeing workshops
Lamiya Samad, Norfolk & Suffolk Foundation Trust
Aims of project:
To focus on refugee/asylum seeking communities and develop a health and wellbeing workshop
To work with NSFT external partners (Health Outreach, One Life Suffolk, ICB), VCSE (Suffolk Refugee Support, Inside Out Community, Volunteering Matters) and asylum seekers’ accommodation/hotel manager. Additional insights gained from Advancing Mental Health Equality (AMHE), People's Participation Coordinator and Quality Improvement colleagues, NSFT
To prepare materials for the workshop - translated version in languages commonly spoken by asylum seeking families
Outcomes of project:
Two workshops in Ipswich (the second one had to be rearranged due to Ramadan) - included translated versions of Wellbeing and One Life Suffolk information leaflet, Nutrition resources, linking nutrition and food with stress and wellbeing issues
Poster created as a result of the project - link here
Community relationships were built and a better understanding of the community was developed, e.g. challenges, skills, identifying what people wanted and why
Initial community engagement was challenging
Language barriers - helped by people who could speak English and another language, use of Google translator, posters in different languages
Next steps:
Feed into the NSFT PRAISE (Protecting Refugee and Asylum Seekers’ Identifies by Supporting and Engaging) project
Apply for funding to further develop work, with the NIHR funded 'health and being' workshops forming the foundation of PPIE and trusting relationship-building process
To strengthen the PPGs through the recruitment of research champions, and widen research access and information to under-served communities
Karen Norcutt, research manager, Primary Care, Breckland Alliance (School Lane Surgery)
Aims of project:
To widen research participation among people from deprived areas, who make up 25% of the population
To drill down in more detail into the people who come forward for research to assess the effect of the funding
To raise awareness of research by taking our work into communities to spread the word about studies
To develop a better understanding of the needs and challenges of people in these deprived areas, and to take these into account when considering research expansion
Outputs
Hired a Portuguese and Eastern European translator to support visits in the community
Set up community meetings to discuss Patient Participation Groups (PPGs) and research with communities in the area
Produced a banner and posters for the main public and meeting spaces, translated into the key languages
Provided link in the surgery for interested people to contact
Outcomes
Staff regularly attended a community cafe where up to 80 people met every week, as well as a mother and baby group, hot spots where our Portugese and Eastern European Communities meet up, and a recent Romany Community settlement
An expected outcome was to have research champions in PPGs at surgeries - this was not achieved due to the time frame, and there is an aim to develop relationships so that this is possible in the future
Next steps
Outreach meeting areas in wider communities where research information would be displayed frequently
Explore ways to make participation easier and provide research champions the community can relate to and feel more comfortable with to discuss research
To assess and expand the inclusion and diversity of the research panel and recruitment to studies
Chrissie Mills, Papworth
Aims of project:
To educate patients about ways to get involved and to diversify our panel
To dedicate time and resources to community engagement with people from different backgrounds and cultures
To develop resources to ensure they are appropriate to people of varying backgrounds
Outputs
Explored the EDI distribution of Royal Papworth Hospital patients vs our participants and created a report
Created a leaflet in an easy read format to be shared around the hospital and via social media
Taking part in the Heart and Lung Research Institute (HLRI) family day at Papworth to promote research, raise awareness and encourage participation
Outcomes
Recruited a new Champion
Leaflet is in development to share on the website and social media
A June event was planned to support wider participation
Next steps
Our department is committed to making sure everybody has the opportunity to contribute
We will continue to develop and consult the PRCs on our activates and increase engagement
To create posters and materials to advertise that the trust is research active
Claire Adams, West Suffolk NHS Foundation Trust
Aims of project:
To increase research awareness amongst West Suffolk Hospital patients, highlighting that the Trust is research active in order to enhance access and recruitment
Outputs
A number of patient videos for social media and our website to advertise that we are research active and to give the perspective of research participants
Outcomes
Release the videos across our social media platforms (via our communications team) on the run up to international clinical trials day to boost our reach in the community and to raise awareness of research at West Suffolk
Next steps
Add videos to our website and further enhance our website research page
To update NNUH research website pages, with focus on diversity and inclusivity
Michael Sheridan, Norfolk and Norwich University Hospitals NHS Foundation Trust
Aims of project:
To develop our website in particular our public and patient focused pages
Outputs
Reviews into best website practice for engaging diverse audiences and providing inclusive content, to drive our approach towards making the website accessible to all; for example, making text available in various languages, the ability of users to increase/decrease text size and contrast, and to utilise voice recognition technologies
Engaging with the Trust PPIE group to understand what patients and the public would like
Outcomes
Individuals engage with our website and find the information they seek
The website presents that research is inclusive for all, breaks down barriers or misconceptions so they can see it as something they can be part of
The changes show that research is not just driven by clinicians and their voice matters
Users can more easily find other support services relevant to them
To hear real experiences of research participants from their community
Next steps
The website is a permanent feature and we will continue to update it to meet the needs of our community
Continue to engage with PPIE groups for their feedback and make real time changes to reflect the feedback and analytical reports
Collect information on local impacts of research in primary care across communities
Clare Symms, Norfolk and Waveney ICB & Suffolk and North East Essex ICB
Aims of project:
To consult with participants and staff to develop an acceptable and effective method/framework to collect information on local impacts of research in primary care across communities
Outputs
Information gained from 9 participants of Prodemos study
Better understanding of how to collect research impacts from participants and what is important to them.
Participants found the questions were clear and appropriate,
Participants prefer face-to-face discussions with a nurse rather than an online survey, but email was considered an appropriate contact method,
Participants want to have the discussion at the end of the study, after or during a study visit
Participants want posters/videos promoting research in waiting rooms/pharmacies, or to be informed by GPs about relevant studies
Participants would like to see research being promoted on social media/NHS website
Outcomes
We are working on developing this into a pilot project
Pulling the data together to make a pilot framework for collecting impacts
Working closely with the CRN PC (Public Contributors) team around how best to pilot this project in order to not overburden participants, practices or teams
What is being collected sits between PRES and patient stories and so it is important to explore how these fit into our wider strategy
Next steps
Measure the impact of research on populations, communities and individuals
Travelling to collect research impacts is labour intensive, with “dead time” between appointments, so ideally this would be built into follow-up visits
We need to consider the impact on nurse capacity and clinic time and work with the CRN PC teams to identify the best approach (online/telephone/video collection are options.
Participants in Prodemos were 60+ and younger people may be happier with alternative methods rather than in-person follow up
Feed back all findings into those communities, populations and our services
Consider best how this kind of information could be used / shared more widely
To create a working group to develop website resources as well as supporting those without digital access
Clare Symms, Norfolk and Waveney ICB
Aims of project:
Patient Participation Group (PPG) members to look at patient research website to discuss how it could be translated into resources to make research information more accessible
To make links with community groups about research and what materials may help to promote research for those without digital access
To review and pull together feedback from these groups to develop resources suitable for a broad audience
Outputs
Developed a community engagement plan with Community Connectors with the Mile Cross Phoenix Centre – MX community groups
Worked with the communications and engagement teams at the ICB to align our community engagement work more broadly with the work of the ICB, and ensuring we can maximise opportunities for engagement more broadly
Outcomes
Started building relationships with both the PPG members as well as with the community connectors and the Norwich Mile Cross Community Centre
This is an ongoing piece of work to develop relationships and to work with them around enabling research more generally
Next steps
We are still in the process of building relationships and will continue to develop these and to work with these groups to develop resources and promote research.
To update NNUH research website pages, with focus on diversity and inclusion
Carla Thompson, North West Anglia NHS Foundation Trust
Aims of project:
To host an event with Consortium of Peterborough Community Groups (CPCG) including: Latvian, Lithuanian, Slovakian, Polish, Romanian, Nigerian, Ugandan, Timor, Indian & Roma communities
For the CPCG community leaders work with NWAFT (on Core20plus areas) starting with maternity
To increase opportunities to engage with people from a variety of communities, ask about barriers and how research can work for them, whilst introducing our research, focusing on maternity
Outputs
"Your Pregnancy Journey" event in March 2023 at the Gladstone Community Centre with NWAFT and community stands e.g. Rahman Project and local businesses run by and for women - community groups felt as represented as the Trust and we had good attendance
International Women's Day was acknowledged
40 goodie bags were given out containing leaflets from the stands including ours, and there was an estimated attendance of 100 people
PPIE grant funded posters, leaflets and colouring sheets for children were available
We produced an R&D leaflet in key languages; now available to research nurses across the Trust.
We shared general research and specific study information - e.g. Plan A that is holding similar events for their study
Outcomes
Promoted Research Champions and Public Contributors with members of the public
Research posters were useful and will be used at future events (and will include information on Be Part of Research)
Talked to the public about research; there was a good level of interest and a desire to be more involved, and a desire for more events
Research was promoted in Trust and community maternity networks
Next steps
Shared experience with Plan A study and connected it with Rahman Project
Off the back of the community event the research team presented to the Trust Patient and Public Voice Partnership - members volunteer on other Trust patient groups and some have particular interests e.g. dementia
R&D recruited over 5 new Research Champions from Trust volunteers
Work more with CPCG and hold more events around Core20plus5
We had interest in starting a study and had people interested in careers
Leaflets for PPIE
Jackie Orford, Norfolk and Norwich University Hospitals NHS Foundation Trust
Aims of project:
To design and develop new leaflets to widen participation and increase recruitment of Public Research Champions (PRCs)
Outputs
PRCs have been involved in the development of two new leaflets (previously one leaflet), designed to encourage participation in research, and to recruit more volunteers (PRCs)
Outcomes
Desire to increase the number and diversity of PRCs
Desire to widen participation in research
Provided a resource for PRCs to distribute at events and stimulate conversation
Link here to A5 flyer and here to folded leaflet
Next steps
To better understand 'Easy Read' - NIHR provided contacts and development of the Easy Read versions is in progress and will be used at future events, and at PRC 'talk to me about research' sessions
Early plans for a ‘card’ for patients to hand to clinicians i.e. ‘I am interested in participating in research’
PRCs are actively participating in events: e.g. Norwich Science Festival, Clinical Trials Day etc
Delivering research to make patients, the NHS and social care, better