What does PPI in research look like?
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.
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Building connections for future PPI relationships: The "Cut from the Same Cloth" project
Textiles trace the shapes of individual lives. They invoke memories, embody emotion, create connections and provide a sense of continuity. Each textile holds a story.
This project engages women and girls from minority communities in health research. It aims to establish connections with researchers and build trust in an open, equitable and accessible way through community based workshops involving textiles. Using textiles and personal narratives allows researchers to find common ground with women and girls in minority communities helping to overcome barriers to the inclusion of underrepresented voices in public & patient involvement (PPI) in health research.
“I celebrate the fact that the participants will be equal partners in this exhibition, building initiative alongside biomedical research scientists.”
-Kilkenny County Council Arts Office
PPI Contributors
The project included strong elements of co-creation with the target participant groups from initiation. In the proposal development, the team connected with community leaders from the Bangladeshi, Kashmiri, Venezuelan communities; Muslim Sisters of Eire; the Islamic Cultural Centre; an Iranian-American patient partner and other supporting organisations.
The project will facilitate conversations between researchers and minority communities in Ireland where power dynamics are equalised. Both are sharing stories with personal emotional resonance: the researchers of their lives and work, and minority communities of their lives and countries of origin. By the end of the project both will have gained insight into each other’s world and will get to know each other as humans.
Involvement
Project design: Discussions with the communities highlighted above helped to evolve the project idea iteratively; explore barriers, challenges and opportunities.
Workshops: Community partners relayed information through their networks and to recruit participants. They engaged with the project staff to ensure the workshops are designed to meet the needs of each community.
As the project progresses, there will be further involvement in the public engagement and exhibition elements of the project.
Outcome
This project is on-going. Expected outcomes include researchers learning key skills in communication, cultural awareness and public engagement. They will build connections with people from minority communities who may self-select to become involved in
research at a later date.
The project will produce textile inspired scientific images printed on fabric; mounted pieces of characteristic textiles from migrant countries of origin and a large hand-woven tapestry representing the textiles of 200 women along with an integrated QR code that links to a dedicated digital experience for deeper engagement with minority community member stories and scientists’ research. A digital exhibition platform will be created in addition to an exhibition in at least 5 venues in Ireland, including in art galleries and community settings.
The team plans to develop a framework for researchers engaging with minority communities and sustaining relationships once the workshop phase is completed.
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Project Team | Elaine Quinn, Institute Manager (Communications & Education), UCD Conway Institute Prof. Amanda McCann, Principal Investigator, UCD Conway Institute & UCD School of Medicine Dr. Arman Rahman, Assistant Professor, UCD Conway Institute & UCD School of Medicine Anna Wedderburn, Public Engagement, UCD Conway Institute & Systems Biology Ireland Lorna Donlon, Artist in Resident UCD |
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Project Funders | Science Foundation Ireland, Discover Programme |
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PPI Budget Category | >€20,000 |
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More Information | This project focused upstream to PPI in research, in the pre-commencement relationship building phase. It focuses on sustainability of connections with minority communities. About: See UCD Conway Project exhibition site: (opens in a new window)cutfromthesamecloth.org |
What is research? Promoting the role of adults with an intellectual disability in conducting and participating in research.
Adults with an intellectual disability (ID) have an important role to play in setting the research agenda in health and social care settings, and in society. However, they may experience limited opportunities to engage in research and even less opportunity to be a researcher and identify research priorities.
St Michael’s House (SMH) has a history of supporting individuals with ID to achieve their potential as a member of their community. This project has built capacity and confidence amongst adults with ID to participate in and lead research. It has adopted a staged approach by developing and delivering an accessible workshop supporting adults with ID to understand what research is, how to set a research goal, how research is conducted, and how they can influence the research agenda more broadly.
PPI Contributors
Six PPI partners – adults use who St. Michael’s House (SMH) services – were co-researchers on this project. An easy to read information leaflet about the project was prepared by the Research Team and people within the service were asked to express interest in joining the group, having reviewed this information (with a staff member for support if required).
Involvement
The PPI partners were involved in all aspects of the project. Specifically:
- A nominated PPI partner set the agenda (in easy to read format) for our Committee meetings and chaired these meetings.
- Another PPI partner took the minutes (in easy to read format), taking responsibility for ensuring these were circulated to all members.
- PPI partners came together, with all Committee members, to plan a staged approach to the project. Within these discussions, we agreed together timelines and also identified specific parts of the project each PPI partner was available for.
- For example, some PPI partners were responsible for researching suitable venues for our Research Workshop. Other PPI partners were responsible for developing an Easy to Read leaflet, for launch at the workshop, entitled – ‘What is Research?’
- Another pair of PPI partners were responsible for trialling ways of conducting research, for example completing surveys with their peers and bringing that information back to our group for discussion and learning.
- PPI partners were responsible, with the group, for developing a flyer advertising the Workshop and sharing this out amongst peers.
- On the day of the workshop, each PPI partner sat at a different table with their peers to share their learning on ‘What is Research’ and on their experience in this Research Group.
- Now, our PPI partners have reconvened in our Committee to discuss the learning from the Workshop event and where we need to go next.
Outcome
The project deliverables and outcomes associated with same include (so far):
- Identification and induction of a project steering group which includes staff within SMH and PPI members.
- A steering group was successfully established with a mix of staff with different backgrounds and 6 service users from across a variety of services with SMH, and with a range of abilities and support needs.
- Development of accessible information about the project to raise awareness and opportunities to contribute to the project in SMH.
- Easy to read information was developed about the project in order to recruit service users into the roles of co-researchers.
- Development of a series of accessible workshops on the theme of ‘What is Research?’
- We developed and held an accessible workshop in the Hilton Hotel at Dublin Airport in November 2023.
- Development of a suite of accessible resources for people with ID to support their understanding about key research concepts.
- The project committee together developed accessible information about ‘what is research?’.
- The PPI partners gained new confidence and skills through their involvement in the project.
- This includes leadership, public speaking, administration skills, teamwork, communication skills, planning and organisation.
- Post-project presentations as part of an organisational research forum.
- Scheduled for Autumn 2024
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Project Team | Sarah Hewitt (SMH) Sabrina Barrett (SMH) Teresa Gadd (SMH) Caroline Howorth (SMH) Suzanne Guerin (UCD) Six Service Users of St. Michael’s House |
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Project Funders | PPI Ignite Network @ UCD Seed Funding, supported by HRB, IRC and UCD. |
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PPI Budget Category | €1,000-4,999 |
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More Information | This project was awarded seed funding from the 2022 PPI Ignite Network @ UCD seed funding scheme which focused on "Equality of opportunity for public and patient involvement in research". |
Alignment to aims of the seed funding
This project has supported adults with an intellectual disability to develop a solid, meaningful understanding of what research entails and of their role as co-researchers on topics that are important to them. Both the ‘What is Research’ booklet and the template for the Accessible ‘What is Research’ Workshop are resources that can be shared or run again – building capacity within SMH and externally.
The accessible workshop content will act as a template that can be modified for other groups across the organisation and the sector. The accessible ‘What is Research?’ workshop has contributed an important foundation for learners as they embark on thinking through how they can conduct their own research. A broader understanding of research will give these learners more confidence to engage in their learning and to share findings with the wider organisation and beyond.
Having the funds from the PPI Ignite Network @ UCD Seed Funding scheme was key to including our co-researchers in a person-centred and meaningful way. Each person was paid for their role/time and this was discussed and agreed with group members up-front. It also allowed us to create resources in a more professional manner and host the workshop in an off-site venue – which was an important factor identified by our PPI partners.
Adults from SMH, as co-researchers on the project, supported and guided the planning process, creating accessible workshop content and co-facilitating its delivery, thus enabling peer-to-peer learning and support. They have co-led the project as a group of Experts by Experience.
STAND UP – Exploring STANDardised Outcome Measures Use with Parents
The overarching goal of the STAND UP project was to facilitate input and strategic advice from service users into (opens in a new window)Barnardos research and evaluation activities. A series of six workshops were run across three Barnardos projects. These workshops were attended by parents using Barnardos services.
The main aims of the workshops were to: (i) identify contributors’ priorities and preferences in relation to research, data collection and assessment priorities in Barnardos services, (ii) collaborate with contributors to facilitate a review of Barnardos research tools, in particular the measures used in Barnardos assessment.
“They’re taking on people’s views you know, everyday people’s view. It’s not just, you know, someone sitting in an office, piling together a load of information and sending it out, so I found that really interesting” -PPI contributor
PPI Contributors
The PPI contributors were all parents who either use Dublin-based Barnardos services or their child uses the services. This included: two community-based family support services and one early years service. The groups were assembled through advertising the workshops in projects, and via word-of-mouth between staff and service users. In total 30 parents were involved across the 6 workshops. All contributors were mothers, from the local community, and the vast majority were White Irish. Their history of service use with Barnardos varied. Many parents used a range of services, while some were only using one. Some parents had been engaged with Barnardos for years, while others had been engaged with the services for less than a year.
Involvement
PPI contributors were involved in workshops which were designed to allow parents explore and identify their own priorities and areas of interest vis-à-vis research in Barnardos. Parents involved in the workshops also discussed the suitability of data collection tools (e.g. wording of standardised outcome measures, information sheets, consent forms) and collaborated with the PPI group in determining the suitability of proposed tools through interactive, collaborative activities.
The hosting of the workshops involved interaction and collaboration between the Barnardos research team, UCD staff/students as well as Barnardos service providers. For example, the project planning and grant application was completed by the Barnardos research and evaluation manager, supported by (opens in a new window)Prof Eilis Hennessy (UCD). Subsequently, a Barnardos researcher (Andrea Eakin) and UCD student (Aundria Cameron) collaborated to create a plan for the workshops. Service providers in Barnardos advertised and facilitated workshop hosting in community-based venues. Ongoing collaboration between Barnardos and UCD includes the development of post-workshop reports, as well as a PPI impact log.
The PPI workshops were evaluated using feedback forms and a small number of interviews. Feedback provided by parents in the feedback forms and follow-up interviews was very positive. Overall, contributors found the workshops easy to attend and enjoyable. They felt comfortable in voicing their views and opinions, and appreciated being heard. Almost all contributors left their contact details to engage in more PPI activities in the future. Some parents also expressed how having insight into how research and evaluation is conducted in Barnardos has given them a more positive view and they are now more trusting of the process.
Outcome
The key aims of the PPI project were to inform research and evaluation activities across Barnardos services. The workshops have helped to identify and build an understanding of service users’ priorities when it comes to research and evaluation across Barnardos. For example, a learning from workshops related to importance of breaking down barriers to service engagement through integrated, seamless service delivery. Following identifying this as a research priority, we have subsequently sought and have been successful in obtaining funding to explore the “how to” of service integration.
In addition, parents explored on the types of data collection activities they had experienced in Barnardos and provided feedback on types of standardised outcome measures used to capture outcomes in parent and child wellbeing. This was very beneficial in highlighting challenges and barriers to collecting sensitive data from service users and has been used to inform the development of the following:
- Wording and formatting of parent information leaflets and consent forms
- Formatting options for standardised outcome measures
- Identification of appropriate outcome measures to be used across Barnardos services
- Protocols for data collection
- Development of guidelines for staff collecting measures
More generally, the workshops have helped to build a better understanding of how to ground research and evaluation activities in Barnardos in the voice of parents and to build better links between research, services and service users. We hope this project will provide a basis for ongoing PPI activities and further engagement. The success of the PPI activities was explored by an anonymous feedback form and follow-up interviews with contributors. Positive feedback on the process was provided by contributors.
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Project Team | Gráinne Hickey, Research & Evaluation Manager, Barnardos Andrea Eakin, Researcher, Barnardos Aundria Cameron, UCD MSc Psychological Science Graduate Prof Eilis Hennessy, UCD Department of Psychology |
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Project Funders | PPI Ignite Network @ UCD Seed Funding, supported by HRB, IRC and UCD. |
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PPI Budget Category | €1,000-4,999 |
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More Information | This project was awarded seed funding from the 2022 PPI Ignite Network @ UCD seed funding scheme which focused on "Equality of opportunity for public and patient involvement in research". |
Alignment to aims of the seed funding
This project gave voice to a ‘seldom heard’ group and facilitated parents who engage with Barnardos services to have input into and inform the development of research and data collection activities across the organisation. This is important as Barnardos services work with families and communities who experience disadvantage and inequality. A greater proportion of service users are from minority and marginalised groups when compared to Irish population data.
"Involving service users, through PPI activities, in the development and implementation of research activities in this way has been highly worthwhile and has been important in developing our understandings of their needs, concerns, and priorities and ensuring we have the tools to design a standardised outcomes framework that is fit for use."- Barnardos Researcher
Understanding “what works” for children and families engaging in Barnardos services is an important undertaking and requires high-quality data collection and research processes to be put in place. The PPI workshops were successful in creating a space where parents could have their voices heard in relation to the development of research priorities, and the introduction of standardised outcome measures into data collection activities in Barnardos.
Establishment of an Irish Acquired Brain Injury Public and Patient Involvement Group.
The purpose of this project was to establish Irish Acquired Brain Injury Public and Patient Involvement (Irish ABI-PPI) Groups, through a collaboration with ABI Ireland (PPI partner) and the Irish Critical Care-Clinical Trials Network at UCD (research partner).
It sought to include the voice of people with acquired brain injury (ABI) to contribute to high-quality research enhancing its accessibility, acceptability and improving patient outcomes.
This project established two Irish ABI-PPI Groups (Leinster and Munster) including recruitment of members, hosting two online training/introductory sessions and in-person meetings of both groups with a goal of inclusivity and representation.
"Through the PPI Ignite @ UCD seed funding and collaboration with the ICC-CTN, it has been possible to strengthen relationships between researchers and the public we work with, and I hope this is something that will continue.” - Ellen Conlon, ABI Ireland.
PPI Contributors
PPI contributors included 17 people living with acquired brain injury (ABI) ranging in age from 23 and 65 years. The group included a mix of men and women with traumatic and non-traumatic brain injuries of varying causes. Some meetings also included staff who work with people with ABIs, including rehabilitation assistants and psychologists to support the members and also provide a unique perspective.
Group members were recruited through networks within ABI Ireland, with safeguarding and ethics guided by senior psychologists. Senior psychologists worked closely with Ellen Conlon of ABI Ireland to identify ABI survivors who would be interested in participating. When contact was established with those potentially interested, an information sheet was shared to allow them to make a decision about whether or not to get involved. For individuals where an information sheet was not a preferred mode of communication, local staff verbally explained the initiative.
Two groups were established based within two HSE Community Healthcare Organisation (CHO) areas in Ireland - CHO 6/7/9 (Dublin/Wicklow) & CHO 3 (Clare/Limerick).
Involvement
The project represented a fully active partnership between (opens in a new window)ABI Ireland (PPI partner) and the (opens in a new window)ICC-CTN, UCD (Research Partner). This included idea generation, project planning and the funding application. Regular meetings of the project team facilitated a strong collaboration throughout the project. PPI group members were recruited within ABI Ireland and supported by their research project officer and senior pyschologists. Meeting scheduling, content and facilitation was conducted by both PPI and research team members. The in-person meetings were hosted at ABI Ireland locations in Dublin and Clare with assistance provided by ABI Ireland's research, rehabilitation and psychology team. Meeting materials (agendas, flyers, minutes), topic guides and discussions were co-lead by the research and PPI members based on previous PPI experience. Financial management was conducted by UCD with PPI member reimbursement (vouchers) delivered by ABI Ireland. Continuation of the group and further meetings are planned beyond the lifetime of this award with both partners engaged.
Outcome
All of the project aims have been achieved with a number of outputs to date.
- Pre-meeting information sheet developed.
- Training materials were developed including agendas, zoom guide, presentations, training exercises and discussion topic guides including terms of reference, minutes circulated.
- Online training sessions for PPI members were delivered with active engagement and discussions.
- In-person meetings were held (Dublin and Clare) with flyers, agendas and meeting materials accessible to those with ABI developed.
These have led to a number of outcomes:
- Two PPI groups now exist representing ABI survivors in Ireland. There was previously no such formal group in Ireland. This provides a PPI voice to the ABI research landscape and significantly enhances inclusivity of this patient population.
- These groups include both sexes, diverse ages, those who have sustained injuries of varying severity and causes, different communication abilities and two broad geographic regions in Ireland. We aim to continue to diversify and enhance inclusivity within our groups.
- PPI members have been introduced to research and PPI adding knowledge and confidence in this area.
These groups will start to discuss aspects of research and specific projects. This will lead to more informed and impactful ABI research throughout Ireland and opportunities to researchers to inform their projects. It will support both ABI Ireland and the ICC-CTN embed PPI within their research.
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Project Team | Prof Alistair Nichol, University College Dublin Dr Leanne Hays, University College Dublin Ms Ellen Conlon, ABI Ireland Dr Kate Ainscough, University College Dublin Dr Lorraine Crawley, ABI Ireland Mr Dylan Keegan, University College Dublin |
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Project Funders | PPI Ignite Network @ UCD Seed Funding, supported by HRB, IRC and UCD. |
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PPI Budget Category | €1,000-4,999 |
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More Information | Presentation at International Brain Injury Association Conference 2023: (opens in a new window)https://www.abiireland.ie/events/ibia-2023-world-congress/ (opens in a new window)https://www.iccctn.org/ (opens in a new window)https://www.abiireland.ie/advocacy/research/ This project was awarded seed funding from the 2022 PPI Ignite Network @ UCD seed funding scheme which focused on "Equality of opportunity for public and patient involvement in research". |
Alignment to aims of the seed funding
"One of the key positive impacts of this project has been working together to improve the accessibility of research findings and participation, especially in exploring alternative methods of communicating beyond written mediums."- Ellen Conlon, ABI Ireland
The project provides a voice to people with lived experience of ABI, a seldom heard group for whom there was no formal Irish PPI group. This project established two such groups in different regions of Ireland. It has established the processes and mechanisms for such groups, their training and coordination. The groups endeavour to be as inclusive as possible. There is open recruitment within ABI Ireland and includes ABI survivors with different injuries e.g. non-traumatic and traumatic of different severities, from different geographic regions, different genders, with varying communication abilities (staff attended to support their involvement), and at different points in their rehabilitation journeys.
Now the groups are established, we further aim to increase inclusivity and diversity through developing tools and hosting hybrid events in different geographic regions to maximise accessibility with trained staff present.
Although the PPI seed funding award has now finished, we will continue to foster, grow and develop this project and the established groups through membership, meetings and direct involvement in ABI research throughout Ireland through a continued partnership between ABI Ireland and the ICC-CTN, UCD.
Critical Care Public and Patient Involvement and Engagement- in Ireland and beyond.
The (opens in a new window)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 ((opens in a new window)REMAP-CAP) with four working groups and outputs underway.
PPI Contributors
- 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.
Involvement
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.
Impact
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.
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Project Team | Irish Critical Care-CTN Prof Alistair Nichol Dr Leanne Hays Dr Kate Ainscough Ms Kathy Brickell |
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Project Funders | Health Research Board European Union FP7 Funding |
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PPI Budget Category | €10,000-20,000 |
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More Information | (opens in a new window)ICC-CTN Website (opens in a new window)ICC-CTN Thought Leadership Series (opens in a new window)Publication 1 |
 & Graine O'Leary (Arthritis Ireland) Priorities for RMD research workshop 2019.jpg)
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.
PPI Contributors
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.
Involvement
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."
PPI Contributor
Impact
“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”.
Research Academic
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.
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Project Team | Emma Dorris, Stacey Grealis, Karmen Kegl, Norelee Kennedy, Louise Larkin, Brian Lynch, Ailis Moran, Justine O'Brien, Stephanie Skeffington, Kayleigh Slater, Rebecca Ward, Allison Willett |
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Project Funders | Arthritis Ireland |
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PPI Budget Category | No specific PPI funding |
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More Information |
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.
PPI Contributors
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. (opens in a new window)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.
Involvement
"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"
Student attendee
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.
Impact
"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"
PPI Contributor
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.
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Project Team | Brona Fullen, Catherine Doody, Keith Smart, Tara Cusack, Maire-Brid Casey, Harriet Wittink, Han van Dijk, Slema May, Alan Kacin, Urska Puh, Tjaz Brezovar, Snjezana Schuster, Ivan Jurak, Dalibor Kiseljak, Olivera Petrak, Ligia Rusu, Mihnea Marin Academic Partners: University College Dublin (Ireland) Universitatea Din Craiova (Romania) Univerza V Ljubljani (Slovenia) Stichting Hogeschool Utrecht (Netherlands) Zdravstveno veleuciliste (Croatia) Collaborators: European Pain Federation EFIC |
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Project Funders | European Union Erasmus Call 2021 Cooperation partnerships in higher education |
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PPI Budget Category | €10,000-20,000 |
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More Information | (opens in a new window)Twitter |
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.
PPI Contributors
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.
Involvement
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.
Impact
“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.
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Project Team | Thilo Kroll Kate Frazer Dublin Simon Community Dublin Simon Client Action Group |
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Project Funder | UCD Dublin Simon |
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PPI Budget Category | Not Declared |
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More Information | (opens in a new window)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.
PPI Contributors
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 (opens in a new window)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.
Involvement
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.
Impact
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.
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Project Team | Professor Patricia Fitzpatrick Associate Professor Kate Frazer Dr Patricia Fox Professor Amanda McCann Dr Ailsa Lyons Dr Nancy Bhardwaj Dr Vikram Niranjan Dr Shiraz Syed Mr Mouayad Masalkhi |
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Project Funders | (opens in a new window)Irish Cancer Society |
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PPI Budget Category | €1000-4,999 |
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More Information |
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.
PPI Contributors
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
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 (opens in a new window)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.
Impact
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’.
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Project Team | Patricia Hall Dr Olive Lennon Prof Thilo Kroll Prof Maggie Lawrence, GCU The iPASTAR Collaborative Doctoral Award Programme RCSI Scholars -Deirdre McCartan -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. |
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Project Funders | Health Research Board |
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PPI Budget Category | Undeclared |
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More Information | (opens in a new window)Project Website |