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PPI in Research Support Small Grant Awards

Award summary

PI

Dates

Funding

Making Science Accessible: Supporting Patient and Public Involvement in Research and Research Communication

Lauren McKenna (QUB)

25.2.26 - 27.2.26

£2,500

The purpose of this initiative is to bring together cancer researchers and people affected by cancer at the All-Ireland 2026 Annual Meeting of the Irish Association for Cancer Research (IACR). This will provide an opportunity for researchers and PPI members to meet and foster relationships that support future research collaboration. In addition, the initiative will educate researchers, at all career stages, on the importance of effective science communication for lay audiences and provide opportunities to develop these skills, drawing on the expertise of PPI members.

     

Explain My Research: Supporting shared decision making in Adult Congenital Heart Disease Clinical Research

Dr Fintan Corvan (QUB)

3.11.25 - 31.10.26

£2,450

BraveheartsNI, a Northern Ireland based charitable organisation which supports young adults and their families with ACHD, will collaborate on this initiative as part of a wider research project to co-design resources that improve informed consent process and recruitment. Patients and their carers will be identified through BraveheartsNI to share their lived experience and why they feel research in this area is important. This will guarantee that patient and public voices are involved from the outset and ensure their perspectives are integrated into the initial design of research studies. Co-production of participant information frameworks will emphasise collaboration and shared responsibility between healthcare professionals and patients in designing and delivering this and future research maximising engagement and trust.

     

Northern Ireland Kidney Voices: A Patient and Public Involvement Initiative

Dr Michael Corr (QUB)

1.1.26 - 31.12.26

£2,050

Funding will be used to to create Patient and Public Involvement (PPI) group for kidney research in Northern Ireland. This initiative, led by the Northern Ireland Kidney Research Fund will ensure more diverse patient voices are included in shaping research, help researchers meet funder requirements, and provide a clear, ethical route for collaboration between patients, carers, and researchers. This initiative will be developed in conjunction with the Northern Ireland Kidney Research Fund (NIKRF), a local charity run by patients and their families to support kidney research and improve the lives of those affected by kidney disease. Patients, carers, and partner organisations (e.g. Northern Ireland Kidney Patients Association (NIKPA), Transplant Sport NI) will take part in co-design workshops to shape the group’s aims, values, and ways of working. 

     

NI Cancer Research Consumer Forum (NICRCF) members, attendance at VOICE 2025

Ruth Boyd (BHSCT)

31.8.25 - 5.9.25

£2,500

This intensive course (VOICE) provides unparalleled opportunity for two NI Cancer Research Consumer Forum members to learn from leading researchers and clinicians in seminar settings and, uniquely, in a hands-on laboratory setting. An array of topics in cancer research are covered, increasing confidence in patient advocacy with the objective of enhancing effective partnership working in cancer research. Enhanced understanding and expertise in cancer research PPI will inform partnership working in cancer research, promoting co-design and co-production in cancer research and building leadership, training and influence in this arena.

     

The Value of Lived Experience: Introductory Training on Research Involvement for Service Users and Experts by Experience

Prof Paula McFadden (UU)

6.10.25 - 28.11.25

£2,500

This initiative aims to build capacity to enable people with lived experience and service recipients to engage with research engagement opportunities on an informed basis. A 10 credit, Level 4 academic module entitled ‘Service User Involvement in Research’ has been written to meet the stated aim.The course will provide service users and those with lived experience with education containing relevant knowledge, skills and values which are important for informed PPIE and inclusion. The content will enable research engagement in a variety of ways such as participation, peer researchers, advisory panel membership and dissemination activities.

*click here for Executive Summary

     

Post qualifying research methods programme (Ulster University) place for a young person with lived experience

Anne McGlade (NISCC)

1.9.25 - 30.6.26

£2,500

Funding will be used to support one young person with lived experience to participate in the post qualifying Research Methods Programme in conjunction with Ulster University. NISCC will take responsibility for supporting two other student so that one person is not participating alone. The post qualifying course has been designed to ensure that those with lived experience get the same teaching, support, and opportunities as social work practitioners. It is the co-working and networking within the course that works creating mutual understandings and respect. 

     

Exploring the needs of patients with a Left Ventricular Assist Device (LVAD) in Northern Ireland

Dr Loreena HIll (UU)

1.8.25 - 1.11.25

£2,450

Funding will be used to establish a Steering Group, that will include patients with a LVAD, clinical professionals, academic researchers, and representatives from Patient Associations. The Steering Group will be involved in the co-production of the future research applications. This will encompass co-development of the original research idea, planning and designing effective methodological to dissemination and next steps strategies. 

     

What Matters Most in Managing Headache: A Co-Designed Exploration of Priorities, Practices, and the Potential Role of Digital Support

Dr Joanne Marley (UU)

1.6.25 - 31.12.25

£2,500

This PPI initiative aims to include individuals with lived experience of headache disorders in shaping the direction of research by exploring patient priorities, self-management, and the potential role of digital support tools. Headache disorders, particularly migraine, are among the leading causes of disability in the UK and Europe, however people living with headache report their views are underrepresented in research. Through collaboration and co-design, the project will identify priority areas for research, support development of accessible interventions, and promote person-centred approaches to headache care.

     

Building Advocacy in Medical Students in Low-Diversity General Practices

Dr Clare Puddifoot (UU)

1.4.25- 31.8.26

£2,500

The purpose of the PPI initiative is to ensure that the perspectives of refugees, asylum seekers, and their communities inform the design, delivery, and evaluation of the study titled Building Advocacy in Medical Students in Low-Diversity General Practices. This study explores how primary care placements in underserved areas affect medical students’ development of advocacy skills. The initiative empowers refugees and community representatives to shape advocacy training. The study team will establish a Refugee Health Advisory Group (RHAG), comprising refugees, community leaders, and primary care professionals. This group will co-create and refine an interview guide used in the study to evaluate advocacy training in Primary care placements.

     

PPI in Action; an interactive workshop for early career researchers in biomedical science

Emma Allot (QUB)

5.3.25 - 7.5.25

£2,500

The purpose of this initiative is to provide insight into the real-life workings of PPI in research, through hearing from speakers with lived experience in this area, and through a facilitated workshop to learn from peers who are meaningfully engaging with PPI. The target audience of early career biomedical scientists will gain practical insights into how to engage and work meaningfully with PPI in their research projects. This initiative will encompass a two-part PPI Workshop and a PPI Stand at Irish Association for Cancer Research (IACR) conference (2025).

     

Engaging the public in pre-conception, antenatal and post-natal physical activity research: development of a PPI panel

Dr Nicole Blackburn (UU)

1.1.25 - 31.12.26

£2,500

The aim of this initiative is to establish a PPI panel of health care professionals, community groups and people with lived experience to provide advice, guidance and help co-design research projects that are relevant and appropriate. It is anticipated that this PPI initiative will provide ongoing support and direction for future research projects. The PPI panel would be actively involved in the design, conduct and evaluation of research projects related to pre-conception, antenatal and post-natal physical activity.

     

Ethnic Minority Led Cultural Competency Training for Medical Students on the Island of Ireland

Dr Clare Puddifoot (UU)

1.11.24 - 1.5.25

£2,500

This initiative aims to put members of the Traveller community, who at times can be a carer or a patient, at the centre of the learning experience for medical students who are developing their professional identity and awareness of unconscious and conscious biases. The Traveller community will define the learning objectives they feel doctors of the future should be cognisant of when caring for patients from an ethnic minority promoting increased equality, diversity and inclusion awareness.

     

Social Care Research Priority Setting Group

Paul Webb (Praxis Care)

1.1.25 - 31.3.26

£2,368

Funding was used to establish a research priority setting group. The aim of the group will be to identify social care research priorities. The group will include a range of stakeholders including service users, carers and health and social care professionals. The initiative will be supported in-kind by Praxis Care and Queen’s University Belfast.

     

Women's Voices Shaping a Women's Health Strategy for Northern Ireland

Rhonda Murphy (Derry Well Women)

30.8.24 - 30.4.25

£2,500

Funding suported the development and design of a listening exercise with and for women of Northern Ireland to place Women’s Voices at the centre of planning for women’s health. To ensure that Personal and Public Involvement (PPI) shapes the listening exercise, particular attention was given to ensure the involvement of women traditionally disadvantaged by health inequalities.The work of the Stakeholder group will shape the process for developing a women’s health strategy for Northern Ireland.

     

Impact of Children’s Social Worker Turnover on Service-Users and Families

Prof Paula McFadden (UU)

1.11.24- 28.2.25

£2,500

Funding supported the establishment of a PPI steering group consisting of care leavers, family and carer representatives (Care Leaver Group, Patient Client Experience Group, Parent Advocacy Group, Fostering Network, & VOYPIC representatives), and BASW representatives. The applicant aimed to include the voices of service recipients in applications for funding for further research in the area both locally and nationally.

*click here for Executive Summary

 

 

 

All-island Cancer Research PPI meeting and networking: NI Cancer Research Consumer Forum (NICTN) and Patient Consultants Committee Ireland (Cancer Trials Ireland)

Ruth Boyd (BHSCT)

25.9.24- 25.9.24

£2,475

Funding supported a shared learning event between members of Cancer Trials Ireland (CTI) Patient Consultants Committee (PCC) and representatives of NI Cancer Research Consumer Forum (NICRCF) in Dublin. 

*click here for Executive Summary

*click here for the event report

 

 

 

NI Cancer Research Consumer Forum (NICRCF) members, attendance at VOICE 2024 - Vision on Information, Confidence and Engagement Course

Ruth Boyd (BHSCT)

1.9.24 - 06.9.24

£2,180

This funding enabled two experienced NI Cancer Research Consumer Forum to attend the VOICE 2024 Course (bench to bedside science for patient advocates)  held at Barts Cancer Institute, London. This Independent Cancer Patients Voice (ICPV) co-designed intensive 5 day residential course offered unique learning opportunities with peers and leading researchers and clinicians including hands-on practical sessions in the laboratory setting. 

*click here for Executive Summary

*click here newsletter report

 

 

 

Public involvement in health research in NI: Facilitating the voice of lived experience in shaping future research and policymaking

Dr Laura McGowan (QUB)

1.6.24-31.12.26

£2,280

This proposal aims to use the funds in two ways (i) to fund input from PPI collaborators as part of planned workshops as part of ongoing health research into maternal health inequalities; and, (ii) to fund input from PPI collaborators in the research development process which will lead to better integration of PPI into research and policymaking arenas.

 

 

 

Establishing and Sustaining development of a Northern Ireland Head and Neck Cancer (HNC) Research PPI Group

Ruth Boyd (BHSCT)

14.8.23-30.9.26

£2,493

Funding was agreed to host an initial public awareness and information event for patients, carers, and health and social care professionals, to support the initial establishment of a Head and Neck Cancer PPI group, and to help sustain this PPI group through additional opportunities for networking and training events. This group has been a huge success to date.

 

 

 

Northern Ireland Lewy Body Dementia (LBD) Research Advisory Group (RAG)

Paula Sinead Donnelly (QUB)

1.8.23-31.7.27

£2,496

Funding supported the research to develop a Research Advisory Group (RAG) to facilitate the codesign of research projects. This funding has enabled the delivery of structured, in-person involvement activities and the development of a sustainable, trusted network of PPI contributors. This Lewy Body Dementia (LBD) Research Aadvisory Group is now recognised as one of only two LBD-specific PPI groups in the UK.

 

 

 

Fostering partnerships between cancer researchers and people affected by cancer

Emma Allott (QUB)

1.2.23 - 31.12.23

£2,500

This initiative supported various PPI activities at at the 59th Irish Association for Cancer Research (IACR) conference (2023). This included a 3-hour PPI Workshop aimed at early career cancer researchers, and a PPI Stand for the duration of the 3-day meeting, where cancer researchers could chat informally to PPI contributors in their own time.

*click here for Executive Summary

 

 

 

Attendance at the ASCO annual conference by NICRCF member 

Ruth Boyd  (BHSCT)

2.6.22- 7.6.22

£1,130

This application supported a member of the NI Cancer Research Consumer Forum to attend The American Society of Clinical Oncology (ASCO) Annual Meeting (a major international educational event for the oncology community and is attended by UK/NI oncologists). 

* click here for Executive Summary

 

 

 

Service User Research Initiative

Paul Webb (Praxis Care)

1.6.21- 31.5.22

£2,415

This initiative established a Service User Research Initiative to promote service user research in Northern Ireland. The aim was to train, support and facilitate people with experience of health and social care to get involved in identifying research priorities, designing projects, securing funding, conducting research and disseminating findings.

* click here for Executive Summary

* click here for research article

* click here for case study

 

 

 

The Involvement, Participation and Engagement of people living with Parkinson’s disease in Undergraduate Nurse Education

Dr Gary Mitchell (QUB)

1.1.20- 30.6.20

£2,002

This initiative involved the co-design of an audio podcast with people with lived experience of Parkinson's Disease, Parkinson's Disease advocates, student nurses and academic staff. A 75-minute audio podcast about Parkinson's Disease was produced.

* click here for Executive Summary

 

 

 

PPI Co-Designers in AHP Research in Northern HSC Trust: a co-production approach to the development of tools and resources 

Dr Elaine Duddy (NHSCT)

1.6.20- 30.8.20

£2,500

The aim of this project is to identify the perceptions of NHSCT Allied Health Professional staff, their service users, carers/families and public on the tools and resources to facilitate Patient and Public Involvement in Health and Social Care research.

* click here for Executive summary