PPI Case Studies
There is a rich diversity of public and patient involvement happening across UCD. We are firm believers in learning from peers.
In this section we highlight some of the different examples of PPI in UCD, both past and present for you to explore, consider, and get inspired.
Critical Care Public and Patient Involvement and Engagement- in Ireland and beyond.
The Irish Critical Care-Clinical Trials Network, UCD established the Irish Critical Care-Public and Patient Involvement (ICC-PPI) group in early 2020. ICC-PPI consists of past intensive care unit (ICU) patients and relatives aiming to make our research accessible and meaningful to patients, families and the public. The ICC-CTN now leads an international PPIE network (>3 continents) linked to the adaptive platform trial testing treatments for community acquired pneumonia and COVID-19 (REMAP-CAP) with four working groups and outputs underway.
- ICC-PPI group of 8 past Irish ICU patients and relatives who generously give their time, 2020-present. We aim to expand membership to all Irish regions.
- REMAP-CAP PPIE group of investigators and PPI representatives from Europe, Australia and New Zealand, North America and Asia, 2021-present.
- Focus groups: 80 members of the public (aged over 18 years) in Belgium, Spain, Poland and the UK.
- International Survey: 6804 members of the public in 8 countries globally (Belgium, Poland, Spain, Ireland (850), the United Kingdom, Canada, Australia and New Zealand). Both focus groups and surveys were conducted in 2014-2019 as part of EU-funded PREPARE consortium.
The ICC-PPI group have been involved in all parts of the research cycle (topic importance, grant applications, network and trial governance, study processes, consent models, dissemination). These topics and study documents (including patient and public facing) have been discussed in quarterly meetings and by email communication in the interim. Members have supported several funding applications.
The International REMAP-CAP PPIE Group: will develop regional PPI groups, host PPI meetings, conduct public surveys and develop public-facing documents in all regions in a harmonised, coordinated fashion through a hub and spoke model international group led by the ICC-CTN at UCD. The first public-facing document has been developed and published. There is 4 working groups focused on these aspects.
The PPE focus groups and international survey influenced our research ideas, how we plan and conduct our research with specific emphasis on pandemic related research, acceptability of our consent models (overall high levels of acceptance) and the use of biological samples for research.
The focus groups and international survey (2014-2019) influenced researchers, practice policy and PPI. To summarise the key findings, people understand and value the public health importance of emergency and pandemic research and recognise the requirement for simplified consent models to reduce enrolment barriersin trials. The majority of those surveyed would prefer deferred or third-party consent to participate in ICU clinical trials during a pandemic and are supportive of this research.
ICC-PPI Group discussion and activities have shown support for our research topics, studies, biological sampling and trial processes, in particular, consent. They have influenced our consent process, forms and dissemination (improving consent procedures, patient-facing documents, methods and modes of dissemination, supportive of research priorities). They have helped us understand the patient perspective and journey. Members of our group have been active in the media and social media telling their story and how they feel about research and PPI.
REMAP-CAP PPIE group activities have influenced public dissemination to date. Future activities will inform all study stages, enhance PPI, complete further international surveys and future research activities. This will be of interest to researchers, PPI, practice and policy worldwide.
Irish Critical Care-CTN
Prof Alistair Nichol
Dr Leanne Hays
Dr Kate AinscoughMs Kathy Brickell
Health Research Board
European Union FP7 Funding
|PPI Budget Category||€10,000-20,000|
Working together to define priorities for rheumatic and musculoskeletal disease research in Ireland
Traditionally, the health research agenda has been largely researcher- and politics-driven. There has been limited influence from people living with rheumatic and musculoskeletal diseases (RMDs), caregivers or the community. This can lead to research gaps that fail to address important needs of these stakeholders.
In this research, we formed a team of people living with RMDs, researchers, and healthcare professionals to work together. With more than 1,000 responses across two surveys, we identified the top RMD research priorities for Ireland.
The core project team was formed from different parts of Ireland. It had six people: half were people living with RMDs and half were research academics. The PPI contributors were members of the Patient Voice in Arthritis Research and responded to a specific call for expressions of interest.
The project was overseen by the Arthritis Ireland Research Working Group which included two senior members of Arthritis Ireland and a person living with RMD. The charities Arthritis Ireland, iCAN Ireland, and Pavee Point assisted in disseminating and raising awareness of the research.
This project was a partnership. The PPI contributors were involved from idea generation, through to dissemination of the results.
There was equal decision-making power and responsibilities for all members of the project team. The PPI contributors were involved in the design, facilitation of workshops, conduct of research, analysis of data and write up. They were also authors on the resulting manuscript.
"The voice of patients is critical important in co-created research priorities setting. It ensures all stakeholders decide what are important to them and what are the priority areas of research to be funded for the future. In the coming years we should fund more relevant and impactful research based on patients' and all stakeholder's preference. I hope that by highlighting this study we can show the need for a comprehensive research prioritisation programme here in Ireland as well as a more strategic approach to funding research projects nationally."
“This work is hugely valuable to people with arthritis and arthritis/musculoskeletal researchers in Ireland by identifying the top priorities for arthritis research using an approach with PPI at its core. We now have a clear focus on the important research questions in this field”.
It is hard to know what the community of people living with and supporting people with RMDs in Ireland truly need, and how to best meet those needs, if we do not ask. Focusing on what the most pressing issues for the Irish community can help us to better focus energy and resources towards research for the largest impact on people’s lives. Having a focal point can help us make real breakthroughs in our understanding of these complex issues. The publication arising from this work is published in August 2022. However, Arthritis Ireland released the top ten research priorities in advance of this.
The research priorities have been used to inform Arthritis Ireland’s latest research funding call. For their latest funding scheme under the HRB-HRCI funding call, they invited “original, internationally-competitive proposals that are relevant to the research priorities”. Thus, this research has helped inform funding decisions and focus research to meet critical evidence gaps relevant to an Irish context.
|Project Funders||Arthritis Ireland|
|PPI Budget Category||No specific PPI funding|
Let’s ask the experts - co-design of Physiotherapy pain science curricula
Pain management is one of the main reasons people attend physiotherapy. As a topic, pain science is included in physiotherapy programmes but there is no standard curriculum and it is often reported as being inadequate.
The Undergraduate Pain Science Education Augmentation project (UPPScAle) brings together partners from five university Physiotherapy programmes across Europe to standardise and improve pain curricula.
To help inform the new curriculum content we worked with people living with chronic pain and students/recent graduates to inform what skills they believe are necessary for graduate Physiotherapists to have for treating people with pain effectively, and how these skills can be included into teaching.
To help inform the new curriculum content a one-day co-design hybrid workshop was held.Along with lecturers from the 5 partners the workshop included:
People living with chronic pain to ensure that their voice was heard in the curriculum design process. Chronic Pain Ireland (a national charity providing information, education, and support services) advertised the workshop through their social media channels. Six attendees took part (5 females and one male, aged 18-65 years). They had a range of chronic conditions including migraine, back pain, and fibromyalgia.
Final year and recent Physiotherapy graduates from Ireland (3), Romania (2), Slovenia (3) and The Netherlands (3). Students were recruited by an administrator unrelated to the project to ensure no undue influence was not put on them to participate.
Due to COVID 19 restrictions, attendees attended virtually.
"The UPPScAle study day was intellectually stimulating, collaborative and enjoyable. As a recent physiotherapist graduate, I was particularly interested to speak with patients about their lived experience of chronic pain and their feedback on what they value in a clinician. I was inspired to see the strength and resilience these patients exhibit"
The workshop began with separate moderated sessions for people living with pain, for students / graduates and lecturers. People living with pain described their experiences of coping with this condition, how they interact with health services, and what they believe physiotherapists need to know about managing people living with pain (multiple diagnoses, challenges of multiple health problems, health literacy).
Students / recent graduates discussed the skills they needed for treating people living with pain and what topics they would like more of in their undergraduate programmes.
The lecturers discussed how to include new learning in their programmes. At the end of the session, a spokesperson shared the findings from their group to all.
Next, in mixed groups, attendees reflected on how and why to include new learning topics by using ‘De Bono's 6 Hats’ Theory. This theory identifies six lines of human thought in problem solving. Each is called a ‘hat’ and assigned a colour: white (information and facts); yellow (benefits and positives); black (difficulties and dangers); red (feelings, intuition); green (new ideas and possibilities); blue (thinking processes).
Each group discussed two ‘hat’ themes (20 minutes each), after which attendees came together to give feedback.
"It was a very positive day and gives us hope for the future, where there is a more patient centred approach and more collaboration between the patient and the practitioner. We all want the same thing. I think this has really come out very strong. It’s just about trying to find that common ground as to how we achieve that one goal for managing pain"
The results from the hybrid workshop have informed the development of two ‘Train-the- Trainer’ Pain Schools. These Schools, hosted in The Netherlands and Slovenia for up to 30 physiotherapy academic staff from the 5 partner universities take place in September 2022 and January 2023.
The new lectures / modules developed will form part of the UPPScAle open education resource that will be available to all students and lecturers across Europe.
This will enhance pain science education in physiotherapy programmes in the hope that it will lead to improved treatment approaches and ultimately quality of life for people living with pain.
Some attendees living with pain have volunteered to come into the UCD when pain science is being taught to share their lived experience with physiotherapy students.
Han van Dijk,
University College Dublin (Ireland)
Universitatea Din Craiova (Romania)
Univerza V Ljubljani (Slovenia)
Stichting Hogeschool Utrecht (Netherlands)
Zdravstveno veleuciliste (Croatia)
European Pain Federation EFIC
European Union Erasmus Call 2021
Cooperation partnerships in higher education
|PPI Budget Category||€10,000-20,000|
Home Away from Home
UCD worked with the Client Action Group of Dublin Simon to identify research priorities in relation to homelessness. Several small projects were carried out involving clients, Dublin Simon staff and academic researchers. All projects used a design thinking approach. Project 1 developed tool for homeless clients accessing shelters for the first time; Project 2 led to the prototype of a peer-support programme in residential care and Project 3 identified solutions to provide better access to downstream services within one residential site.
The Client Action Group (CAG), operated by Dublin Simon consists of clients receiving homelessness services. The CAG advises Dublin Simon in relation to client-centred issues. ‘Home away from home’ was developed by clients during a ‘Speak Out’ meeting, which was organized and attended by approximately 50 service users. The UCD PPI team in attendance worked with clients and Dublin Simon to transform the research agenda into three distinct projects so far.
On each project, the UCD PPI Team worked with a different group of clients, support workers, volunteers and staff of Dublin Simon.
The ‘Speak Out’ event was co-facilitated between the Client Action Group and Dublin Simon staff. The UCD PPI team was invited to present the idea of collaborative research and invited clients to help identify an involved research agenda. As a next step, three projects were taken forward jointly between Dublin Simon and UCD. Dublin Simon and the Client Action Group advised on which clients would be happy to work with the UCD team. All three projects involved repeated meetings, mostly in Dublin Simon premises. However, clients also made visits to UCD and participated in a seminar event.
- In Project 1, the team identified the challenge of navigating shelter life in the first days of homelessness. We developed a simple communication tool using a pictorial rating scale and words to describe the new client’s feelings.
- In Project 2, we introduced formally design thinking and developed in five workshops (following the Stanford D process: Empathy, Define, Ideate, Prototype, Test) a peer-support prototype. Clients used their experiences to determine the direction of the project. They were also in charge of interactive workshop elements.
- Project 3 also used design thinking and involved a comprehensive observational and interview-based data collection exercise in one shelter to identify key challenges in why clients may not access downstream services. Interactive meetings led to the identification of solutions to address short- and mid-term challenges.
“The support and expertise we have gained from our partnership with UCD has been a huge asset to the organisation. The perspective and voice of our clients were at the centre of these projects, highlighting them as experts by experience. UCD and the PPI Ignite Network have given Dublin Simon a solid foundation upon which to build a framework for meaningful and impactful client engagement in our research, policy and service provision.”
Michelle Connolly, Senior Research and Policy Officer, Dublin Simon Community
The communication tool developed as part of Project 1 has been ‘tested’ in two shelter sites. A formal evaluation has not been conducted. Preliminary client reports suggest high acceptability and utility of the tool. Thus far, there has been no routine implementation of the tool. Refinements may need to be considered and a reflection on how it can be used for greatest impact.
Project 2 has generated a ‘prototype’ of a peer support program. Initially, the prototype will be ‘tested’ with one peer supporter in one of Dublin Simon’s residential sites. The peer supporter will receive regular supervision from two of the residential care managers. Exploratory data on the number and nature of peer-to-peer meetings, support needs and the acceptability of the programme will be collected by the Dublin Simon team.
Project 3 has led to several potential prototypes that will be tested in the service over the coming months. The prototypes aim to improve the general awareness and accessibility of a variety of supports and services that are geared towards supporting clients to exit homelessness. The prototypes include a wide range of resources such as information sessions and drop-in clinics, an ‘exit map’ of pathways out of homelessness or through addiction services as applicable, and providing peer-led support in services.
Dublin Simon Community
Dublin Simon Client Action Group
|PPI Budget Category||Not Declared|
|More Information||Dublin Simon|
Smoking cessation for cancer patients in Ireland: a scoping and feasibility initiative
‘Health professionals need to read the room’
PPI contributor in relation to raising topic of smoking cessation
Patients who stop smoking after a cancer diagnosis can live longer and have a better quality of life. The aim of this 18-month study, funded by the Irish Cancer Society, was to determine how to support cancer patients to quit smoking.
The research team were guided by a steering group comprising experts by experience [ex-smokers with a diagnosis of cancer], healthcare professionals (HCPs) and leaders in cancer care and tobacco control.
The research to co-develop a smoking cessation pathway included a national audit of services, interviews with patients and HCPs, and a PPI workshop with experts by experience and cancer advocates.
A collaborative patient and public involvement (PPI) approach was adopted from the outset. Firstly, PPI knowledge was sought on the proposed research question at a Patient Voice in Cancer (PVCR) and National Cancer Research Institute UK (NCRI) Dragons’ Den event held in February 2020.
A study Steering Committee (SSC) included three experts by experience, in addition to cancer specialists, and experts from tobacco control. All members provided expert knowledge and sharing of their experience throughout the research.
A final dedicated PVCR workshop was run to garner further PPI input to the research question.
Members of the study team attended a Dragons’ Den event to seek advice and input from experts by experience on co-developing the methods. Feedback from this event provided expertise that shaped decision making in the selection of questions to include in interviews, the terminology used for quitting and treatment literacy, consideration to ensure choice for participants in the timing of interviews, family involvement, and inclusion of questions on the emotive nature of smoking.
Members of the SSC attended meetings virtually, additionally providing expertise throughout the project, including the development of study instruments, questionnaires and topic guides used in qualitative interviews, in addition to attending the PVCR workshop.
The PVCR network facilitated a PPI 2-hour virtual workshop in April 2022. Evidence and results were presented for collaborative discussions with experts by experience, cancer advocates and health professionals to inform decisions as part of the co-development of a smoking cessation pathway.
Collaborating with experts by experience was key to the co-development of the research through the life cycle of the project. This included reviewing questions used in survey instruments, questionnaires, qualitative interview guides and co-developing a proposed smoking cessation pathway and recommendations. We are finalising a draft for circulation to the Irish Cancer Society.
PPI members of the SSC are co-authors on submitted abstracts to national and international conferences. PPI partners who attended the PVCR workshop will be contacted and asked if they wish to be named co-authors on a subsequent publication.
The impact of co-developing a smoking cessation pathway with people who smoked previously and had a cancer diagnosis, and with PPI partners from clinical practice ensures an inclusive and participatory approach. The collaborations provide real-time confirmation of the decision-making and interpretation of findings and thus is a key strength in the further sharing of results.
Professor Patricia Fitzpatrick
Associate Professor Kate Frazer
Dr Patricia Fox
Professor Amanda McCann
Dr Ailsa Lyons
Dr Nancy Bhardwaj
Dr Vikram Niranjan
Dr Shiraz SyedMr Mouayad Masalkhi
|Project Funders||Irish Cancer Society|
|PPI Budget Category||
Working collaboratively to co-design an evidence-based secondary prevention intervention to reduce risk after stroke
“Helen Keller’s famous quote ‘Alone we can do little; Together we can do so much’ is how I feel about our iPASTAR meetings. For me PPI is Participation, Processing & Involvement”
Philip, PPI Contributor
This project asks: how can we best support individuals after stroke to reduce their risk for further cardiovascular events. PPI engagement is embedded in the project through a bidirectional knowledge exchange process, learning from individuals with stroke and feeding back the knowledge gathered through the research process.
As part of the wider iPASTAR (improving pathways for acute stroke and rehabilitation) programme, the direction and content of the research project from the beginning, was informed by a round-table consultation process with individuals with experience of stroke. From here, individual PPI champions volunteered to work collaboratively with researchers/scholars, supported by a wider advisory panel.
Since commencement of the PhD projects we formed a small group panel of PPI champions and PhD scholars to progress individual projects. Our PPI champions – Clíodhna, Julianne, Sigrid, Martin and Phillip all have busy working family lives but delight in coming together regularly to share their experiences of stroke and progress the research projects. They reflect the ongoing reduction in age when stroke can occur and represent the clinical diversity associated with stroke. They bring a range of experiences of stroke occurrence, access and treatment, rehabilitation and recovery, and the challenges of life after stroke.
Involvement of our PPI champions has been integral to conceptualisation, participation, contribution and collaboration throughout the research cycle. We began by co-creating our “vision and purpose” (terms of reference) document as a cornerstone to building meaningful dialogue, stating objectives and expected commitment, and practical organisational elements.
Taking a lead from our champions, group sessions are scheduled ahead on a monthly basis with agenda and any required supplementary reading shared prior to meeting. During COVID restrictions all meetings were conducted online, for the duration of 1 hour for business, preceded by a half hour catch-up/social chat. All champions were also available separately for individual specific elements of projects which did not require the whole group discussion.
Practically, our champions have provided direction on how best to ensure our website meets international best practice in accessibility standards.
On an individual project level, champions have contributed to the design and content of study participant information; through feedback sessions they have helped develop a topic guide for focus group discussions; they participated in a ‘mock’ focus group discussion to inform and refine prior to commencement of data collection; and they contribute and provide feedback on all oral/poster presentations. My individual champion has contributed to an associated project – a protocol preparation for a scoping review of PPI in stroke research.
Our PPI partnership has received recognition at the RCSI Research Day 2022 winning ‘Best Presentation’ in acknowledgment of our close collaboration and their valuable contributions.
This collaboration has been apparent since my research proposal stage where feedback confirmed the importance of the research question and the aims to improve life after stroke. The impact of our champions has been vital in further developing the methodology of the qualitative study, offering guidance on participant information development, recruitment decisions, practical solutions to potential participant burden, and participating in the preparatory focus group discussion in order to maximise data collection.
An important impact the PPI panel has had on both the research and the doctoral researcher is the language and terminology used when referring to people who have experienced stroke. Whilst ‘stroke survivor’ is acceptable to many or most individuals as it reflects a positive attitude, some of our PPI panel were loath to be defined by their stroke and felt ‘survivor’ did this. The researcher has subsequently changed the participant information to reflect this and now always refer to those with experience of stroke or those who have had a stroke rather than ‘stroke survivor’.
Dr Olive Lennon
Prof Thilo Kroll
Prof Maggie Lawrence, GCU
The iPASTAR Collaborative Doctoral Award Programme RCSI Scholars
-Geraldine O Callaghan
- Clare Fitzgerald
The iPASTAR Collaborative Doctoral Award Programme PPI Champions
- Julianne Hickey
- Clíodhna Ní Bhroin
- Sigrid O Meara
- Martin Fahy
- Philip Osbourne
The iPASTAR Collaborative Doctoral Award Programme Advisory Group.
|Project Funders||Health Research Board|
|PPI Budget Category||Undeclared|