PPI case studies

We invited members of research teams to share with us stories about their experience of public and patient Involvement (PPI).  

We were delighted with the response we received. Although we can't share all stories we received, we selected a few stories to share with you as case studies. We will share more stories in time.

These stories demonstrate how PPI in research can happen throughout the research cycle and shape the way research is carried out.

If you would like to share your story with us, you will find information on our PPI in your research page. Stories may also be shared at various future fora discussing PPI such as conferences and workshops.

The stage in the research cycle:  Identifying & Prioritising, Design, Analysing & Interpreting, Dissemination

Type of research award: Early career award & project award

Title of research grant: The Maternal health And Maternal Morbidity in Ireland (MAMMI) study

Principal Investigator on the award: Dr Deirdre Daly

Aims of the project:

The Maternal health And Maternal Morbidity in Ireland (MAMMI) study was established in 2011 and aimed to identify the existence, extent and prevalence of health problems experienced by fist-time mothers before and during pregnancy and up to 12 months postpartum.

How were people found who wanted to be involved?

Women were offered information on the study at their first book visit to one of three maternity hospitals in Ireland between 2012 and 2017. One to two weeks later, a researcher telephoned them to answer questions and ascertain their willingness to take part. A total of 3047 women were recruited, and retention at three months postpartum ranged from 86%-93% across the three sites.

How were people involved?

From the outset, the MAMMI study aspired to be a study with and for women. Over the years our processes evolved from consulting women to co-designing research, co-presenting findings and co-creating resources with women. In 2017, the team held ‘Sharing the findings’ seminars for participants. Subsequently, funding was awarded to establish an alongside public contributor panel in 2018 which aimed to identify what MAMMI study-related research women wanted to be conducted. An invitation to take part in the panel was sent to all on-going participants and a total of 88 women expressed an interest in taking part. Quarterly meetings, co-chaired by a participant, were held on Saturday mornings throughout 2018.

What training and support was offered?

While we did not offer any training, women said our regular two-way information sharing with women, via the study’s website, quarterly newsletters, and the ‘Sharing the findings’ seminars, motivated them to take part. Travel expenses, gift vouchers or honorariums were offered to women who attended meetings, co-presented and co-designed resources.

What difference did public involvement make?

Women’s involvement led to co-designing the MAMMI study’s second baby and five year follow-up surveys, a separate study on what matters to women in the first year postpartum, and to co-presenting and co-publishing findings. Importantly, the public contributor panel led to the co-creation of a suite of resources  on women’s health after motherhood (WHAM). These resources are based on the MAMMI study’s findings and on what women said they wish they had known. They are free, available in English, Spanish and Dutch and provide reliable, trustworthy and engaging information for women and their partners, and for maternity care professionals to use to complement their practice. WHAM has been recognised by the 2020 Health Service Excellence Awards as an exemplary project contributing to health and social care services.

Women’s involvement has improved how we, as researchers, communicate with women in the study and how we approach and conduct research.

Panel members said they benefitted from taking part also - in the words of one woman, the process ‘inspired the socialist feminist activist in me’.

What would you advise researchers about involvement?

To be successful, public involvement ought to be planned as a core essential component of the study’s design. Genuine public involvement is a long-term process that must be cultivated in order to achieve true partnership and produce actionable results. It requires considerable commitment from women and this must be acknowledged. Our research team’s belief is that the data we collect in the MAMMI study are the women’s data.

Contact details: Dr Deirdre Daly, Assistant Professor in Midwifery, School of Nursing and Midwifery, Trinity College Dublin

Close

The stage in the research cycle:  Identifying & Prioritising, Design, Undertaking/Management, Implementation

Type of research award: European Institute of Innovation and Technology (EIT) Health Grant

Title of research grant: Citizen Engagement Award

Principal Investigator on the award: Dr Éilish Burke

Aims of the project:

'Get Wise’ is a European collaborative project between Trinity Centre for Ageing and Intellectual Disability and  Erasmus MC. Guided by the mission to promote empowerment through knowledge, the programme delivers health education through an innovative online platform in an accessible easy-read manner designed with people with intellectual disability (ID).

How were people found who wanted to be involved?

Independent advocacy groups of individuals with intellectual disability were invited to contribute to the project. Service providers were approached, ethics approval was gained and an invite went to a number of service users. In total over 30 individuals from Ireland and a similar number from the Netherlands participated in the project.

How were people involved?

The project adopts a strengths-based approach to co-creation, promoting involvement in the development of this online programme. Focus groups collaboration was the original plan however due to COVID19, the collaboration had to be changed and online interviews were conducted, ensuring individuals with ID could contribute despite physical distancing requirements.

What training and support was offered?

The project team developed easy-read information to support online involvement, explain what the project was about and what was expected. Facilitators in the participants homes (keyworkers) supported the individuals to access the internet so that they could go online.

What difference did public involvement make?

The programme is developing an online health educational programme for individuals with intellectual disability. Having their voice and perspective shape the content development adds richness that otherwise would not have been captured. Involving the end user ensures the material included is relevant and meaningful to their lives and promotes what is important to them. Overall making the programme more applicable and pertinent to the individuals learning.

What would you advise researchers about involvement?

Through creativity and imagination, involvement of individuals is possible, no matter who or no matter what obstacles you face. This promotes transparency of your research, improving its robustness and strength.  Having citizen engagement included in any project promotes the involvement of those most important in the process, instilling in them a sense of empowerment to lead development and ultimately, as in the case of this project, ensuring the voice of the individual was at the heart of the health educational programme.

Contact details: Dr Éilish Burke, Ussher Assistant Professor, School of Nursing & Midwifery, Trinity College Dublin

Close

The stage in the research cycle: Identifying & Prioritising, Design, Undertaking/Management, Implementation

Type of research award: Project award

Title of research grant: Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA)

Principal Investigator on the award: Prof. Mary McCarron

Aims of the project:

This project involved the development of an accessible health assessment system (A Health Fair) to ensure people with intellectual disability (ID) could participate and engage in objective health measures in a large longitudinal research study (Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA)). The aim of the project was to collaborate with individuals with intellectual disability to develop an approach that would promote reasonable adjustment and, maximise involvement and engagement.

How were people found who wanted to be involved?

IDS-TILDA is a large longitudinal study investigating the health and wellbeing of adults with intellectual disability over the age of 40 years in Ireland. The study engages a number of independent advocates and advocacy groups with intellectual disability across the country to review the protocol for the study. These individuals and groups were invited to engage in focus group consultations to develop an accessible protocol for conducting health assessments with individuals with intellectual disability.  

How were people involved?

I worked with an independent self-advocate to draft the explanatory materials and overall health assessment process including the accessible consent process, easy read materials for the assessments, and the plan to roll out the Health Fair. I then organised focus group consultations with several independent self-advocacy groups throughout the country, ensuring the voices of people with ID were central to developing and refining the approach.  Three advocacy groups reviewed and commented on the materials and processes, making suggestions which were incorporated into the assessment process.

What training and support was offered?

These groups were supported by a facilitator with extensive experience engaging individuals with intellectual disability. Accessible easy read explanatory material was developed and presented to the groups to support their understanding and identify their actions. Each group was supported by their keyworkers.

What difference did public involvement make?

Including the voice of individuals with intellectual disability ensured that the process developed was inclusive, promoted a sense of empowerment among participants and encouraged ownership of the research. The whole process contributed to improving the knowledge of those involved and increased their awareness of health. This all culminated in creating an inclusive health assessment approach that enabled the engagement of over 600 people with intellectual disability in health assessment. The process developed is quite transferable to other populations and cohorts. The development of the Health Fair also contributed to leveraging further funding from EIT Health, a European Union grant agency. This funding supported the developed of an online educational programme for health care professionals on how to include reasonable adjustment in their everyday practice when engaging individuals with intellectual disability. This educational programme has now had over 3500 learners engage in the course which is available on the Futurelearn platform, a digital education platform.

What would you advise researchers about involvement?

People with intellectual disability are best positioned to identify their own needs and support researchers to identify what is relevant and meaningful to them. As a researcher working in the area of ageing and intellectual disability, I am passionate about ensuring meaningful opportunities for engagement and involvement of people with intellectual disability. Frequently people with intellectual disability are omitted from research due to challenges such as communication difficulties or perceptions that they will not be able to consent or understand. However, their omission is an injustice. Through reasonable adjustment, collaboration and co-production meaningful involvement of individuals is possible. The outcome of this project was to successfully engage 604 individuals of all levels of intellectual disability in objective health measures. Stemming from meaningful involvement to ensure an accessible robust Health Fair, these objective health measures contributed to identifying multiple disparities in health and enabled the identification of crucial data that continues to contribute to improvement in the lives of people with intellectual disability.

Contact details: Dr Éilish Burke (Project Manager for award), Ussher Assistant Professor, School of Nursing & Midwifery, Trinity College Dublin

Close

The stage in the research cycle: Identifying & Prioritising, Design, Undertaking/Management,Dissemination, Implementation

Type of research award: Infrastructure Award

Title of research grant: HRB Primary Care Clinical Trials Network Ireland (CTNI)

Principal Investigator on the award: Professor Andrew W Murphy

Aims of the project:    

The HRB Primary Care Clinical Trials Network Ireland (CTNI) aims to improve individual patient health and health care through the design, conduct and dissemination of high quality, internationally recognised, randomised trials in Irish primary care, which address important and common problems.

How were people found who wanted to be involved?

A PPI group was established in 2015, with people identified through community advertisements and personal networks. Our members come from urban and rural areas, they include a mix of age, nationality and gender. Each person has their own life experiences of interacting with the health care system and with family doctors in particular, which gives an interesting range of experiences to draw on when considering various questions about our research.

How were people involved?

Since its establishment, the group has met 24 times, advising primary care researchers from institutions across Ireland. They have, for example, advised on national and international funding applications, GDPR-related issues, and how to establish PPI groups in other areas. They have helped organise 5 national PPI conferences, and contributed to the development of a Science on Screen documentary (http://www.galwayfilmcentre.ie/2019/11/04/world-premiere-of-new-science-on-screen-documentary-the-patient-effect/)

What training and support was offered?

Members of the group are supported at each meeting by a trained facilitator who coordinates group discussions. Individual group members have also attended specific training opportunities, such as grant reviewing with the HRB, and systematic reviews with Evidence Synthesis Ireland.

What difference did public involvement make?

This group now acts as a ‘go-to’ national resource for PPI in primary care research. The work of the group has contributed immensely to the operations and success of the HRB Primary Care CTNI.

What would you advise researchers about involvement?

It takes time and commitment to do PPI well, but the rewards are huge.

Contact details: Patrick Murphy (Development manager) & Martha Killilea (Research assistant)info@primarycaretrials.ie

Close

The stage in the research cycle: Identifying & Prioritising, Design, Undertaking/Management, Analysing and Interpreting, Dissemination, Implementation

Type of research award: Definitive Intervention and Feasibility Award

Title of research grant: Improving outcomes for young adults with type 1 diabetes in Ireland: the D1 Now feasibility and cluster randomised pilot study

Principal Investigator on the award: Professor Sean Dineen

Aims of the project:    

D1 Now is an intervention designed to support young adults living with type 1 diabetes. The aim of the current funding is to further develop and refine the D1 Now intervention and to test the feasibility of the intervention in a cluster randomised pilot trial. 

How were people found who wanted to be involved?

The D1 Now Young Adult Panel (YAP) has been active since 2014. Back then the research team, in collaboration with Jigsaw (National Centre for Youth Mental Health) invited young adults to an open consultation event. Letters were sent to young adults aged between 18-25 years old attending the diabetes service in Galway in conjunction with a social media campaign using Twitter and Facebook. This letter asked young adults to attend the consultation event in Jigsaw if they were interested in getting involved as co-researchers with the D1 Now Study team. It explained that research carried out would be ‘with’ and ‘by’ members of the YAP rather than ‘to’, ‘about’ and ‘for’ them.

Eight young adults went on to form the initial YAP. Since then some of these young adults have moved on, having given huge contributions during their time. We ran recruitment for the YAP again in 2018 and 2020 and we currently have eleven members. The YAP started off with a Galway base however due to the advances in technology, we now conduct meetings over Zoom and have members from all over the country! 

How were people involved?

Since 2014 there have been no aspects of the D1 Now study that YAP members have not been involved in. The YAP members meet approximately once a month and communicate between meetings via a private Facebook group, emails, WhatsApp and a shared Google Drive folder. Two members of the YAP are also members of the study’s Steering Committee.

YAP members have conducted research tasks such as developing the topic guides used in qualitative research as well as participant invitation letters, consent forms and information sheets. They have contributed to questionnaire design and the interpretation of both qualitative and quantitative results. As part of the pilot trial of D1 Now in 2020, they designed a Study Within A Trial (SWAT) investigating if a branded gift and letter from a Public and Patient Involvement (PPI) group would enhance questionnaire response rate in a randomised trial. The branded gift chosen by the YAP was a smartphone pop-socket, and this SWAT was accepted to the Northern Ireland Network for Trials Methodology Research SWAT Repository. They have contributed significantly to dissemination of the study findings including entering the YAP in competitions, submitting abstracts to national and international conferences and being invited speakers at several national conferences, including one focusing on Public and Patient Involvement organised by HRB Primary Care Clinical Trials Network Ireland.

The YAP have produced a consistent and high level of research since their inception and their contribution to the field of diabetes research has been remarkable. One example of such is Strength in Numbers international conference in NUI Galway in 2016 which was organised and run by the YAP. Over the course of three days, the diverse international group of attendees agreed on a core outcome set for clinical trials of interventions for young adults with T1D, 3 key parts of the D1 Now intervention and a health technology solution. Other contributions to the field include co-authorship on 5 peer reviewed and well-cited publications and acting as collaborators on the successful Health Research Board application which is funding the current work.

The YAP have also played an important role in shifting the culture of traditional health research to one that is inclusive of the patient voice. Having been in place since 2014, they are one of Ireland’s longest standing and well-known PPI panels, providing an exemplary example of the motto ‘Nothing about us, without us’.

You can read more about the YAP members at our website www.d1now.ie

What training and support was offered?

The YAP have taken part in several different types of training over the years including research terminology, methods, committee skills and public speaking. A recent example is the training they undertook in qualitative methods with QUESTS. This enabled the YAP create interview guides, co-facilitate focus groups and engage with the data analysis. 

What difference did public involvement make?

The impact the YAP has had on the D1 Now study has been immense. Some examples are as follows:

  • The YAP organised the Strength in Numbers conference in 2016. This was an international conference on the topic of young adult diabetes care. Over the course of three days, the diverse group of attendees including researchers, health professionals, people living with T1D  and policy makers took part in a hackathon and agreed on a core outcome set for clinical trials of interventions for young adults with T1D.
  • Refinement of the D1 Now intervention through contribution to the research team’s qualitative research. This involved creation of interview guides, co-facilitating focus groups and engaging with the data analysis. This resulted in the D1 Now intervention being well tailored to a young adult Irish population before going to pilot RCT.
  • The YAP strongly advocated for the role of a ‘Support Worker’ as part of the D1 Now intervention. They then drew up the job spec for this role and one member sat on the interview panel for the role. We recently completed a pilot RCT of the D1 Now intervention, and the qualitative work shows that this component was highly valued by young adult participants.
  • Contributing to all aspects of the pilot trial of the D1 Now intervention. This involved co-designing questionnaires so they could be easily understood by participants and working with the Support Worker to create resources for young adults with T1D. Some of these resources can be seen on our website https://d1now.ie/blogs/articles 
  • Designing and implementing a Study Within A Trial (SWAT) mentioned above. This piece of work was completely driven by the YAP.

The major contribution that the YAP made to our work is that the D1 Now intervention is not a traditional clinic-based intervention designed by academics and clinicians, but rather has the young adult voice to the fore. The preliminary results from our pilot RCT have been hugely positive, with one young adult participant saying “To be honest, there wasn't anything I didn't find useful about it.  To be honest,  I wouldn't change it, I liked every bit.” There is no doubt but that these positive results are due to the YAP’s involvement throughout the design process.

What would you advise researchers about involvement?

Meaningful PPI is time consuming and needs to be properly planned for at every stage of the research journey. Contributors are giving you their time and expertise and you need to make sure you are fully equipped to make the best use of this. There will be times when it feels difficult to balance PPI with other research demands but a bit of flexibility and creativity goes a long way. As long as you keep the person and their lived experience at the centre of your work you won’t go too far wrong.

Contact details: Dr Eimear Morrissey (Programme Manager) 

Close

About HRCI and its members 

Health Research Charities Ireland (HRCI) is the national umbrella organisation of charities active in health and medical research, together representing over 1 million Irish patients. Through support and advocacy, we represent the joint interests of our 40+ members, working to improve health and prevent illness through research. We also fund and manage the Irish Health Research Forum, bringing together all stakeholders to improve health research in Ireland. It is our core belief that today's health research is tomorrow's healthcare. 

The HRCI/HRB Joint Funding Scheme 

The HRCI/HRB Joint Funding Scheme is a unique scheme that brings together members of Health Research Charities Ireland (HRCI) and the Health Research Board (HRB) to co-fund research projects of key relevance to member charities. For successful projects, the HRB contributes 50% of the cost of the project and the HRCI member charity contributes the remaining 50%. Very small charities currently contribute 25% of the cost and the HRB contributes 75%. The HRB makes an annual contribution of approximately €1 million to successful projects. Each award is worth up to a total of €300,000 (combined charity and HRB funding) for projects from 12 to 36 months’ duration. Public and patient involvement (PPI) has been integrated as a fundamentally important aspect of the Joint Funding Scheme. The HRB includes specific questions about PPI in the application form and the Review Panel includes PPI reviewers who review the PPI aspect of applications. 

Case Study 1: PPI in the HRCI/HRB Joint Funding Scheme: Case study of excellence. Cystic Fibrosis Ireland/University of Limerick: Exploring diet quality in Cystic Fibrosis

Background to the case 

The role of Cystic Fibrosis Ireland in the application 
Cystic Fibrosis Ireland (CF Ireland) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis (CF) in Ireland. The charity participated in the 2019-2020 round of the HRCI/HRB Joint Funding Scheme and co-funded (with the HRB) a successful project designed and delivered by the University of Limerick on diet quality in CF.  As a patient representative organisation, CF Ireland prioritises the funding of patient-centred research and has a strong commitment to PPI. 

The research project 
The aim of this project is to explore diet quality in CF and its impact on disease and quality of life. The proposal sets out a mixed methods design, gathering data via food diaries and food frequency questionnaires to look at the dietary inflammation potential of the diet with health-related quality of life in CF. Online focus groups will also be conducted to explore drivers for current dietary patterns and enablers and barriers to eating a healthy diet.  

Setting out the PPI approach in the application form 

PPI is integrated as a core aspect throughout the application. This started with the approach to setting up the multi-disciplinary research team. The team is led by the principal investigator (PI), Dr Audrey Tierney, Senior Lecturer in Human Nutrition and Dietetics in the School of Allied Health, University of Limerick. She is supported by 5 co-applicants and 8 collaborators, including Dr Jon Salsberg, Senior Lecturer in Public and Patient Involvement (PPI), Ms Liz Jacques, Regional Development Officer with Cystic Fibrosis Ireland and TLC4CF (a charity affiliated with CF Ireland that aims to improve services and supports for people with CF in the mid-west region of Ireland) and a patient advocate with CF Ireland, Ms Caroline Heffernan. The overall PPI approach set out by the applicants is supported by the HRB-funded PPI Ignite Team in UL who are involved in the design of the planned PPI component of the project and will support the PPI work throughout the project.  

The applicants incorporated PPI in their research design and methodological approach through basing the choice of some of their Patient-Reported Outcome Measures (PROMs) on a James Lind Alliance (JLA) priority-setting initiative . Planned online focus groups with people with CF are also described in this section of the application. The applicants propose that questions for these focus groups be developed by researchers along with stakeholder input from the PPI collaborators on the team, to ensure the interviews will elicit information on the themes important to adults with CF.  
The section on project management also incorporates PPI. The applicants propose setting up a PPI advisory group to include representatives from the research team (including the PPI collaborators) and additional patient and health care representatives. The advisory team has a number of roles, including overseeing and advising on the management of the PPI aspect of the research, assisting in the design and delivery of the research (especially regarding the online focus groups with people with CF), ensuring the accessibility and appropriateness of the language used in patient information leaflets and consent forms, and taking part in the evaluation and dissemination of the research.  

In the section on public involvement in the research project the applicants describe how their approach to PPI started well in advance of preparing the application by meeting with the CEO of CF Ireland and a patient representative. This led to the identification of diet in CF as a priority topic for further exploration. The multi-disciplinary research team, including PPI collaborators, worked together to refine the overall research question, taking into account the needs of the target population, as well as to select appropriate outcomes and enhance service user engagement. Within in this section the applicants describe how the PPI advisory group will have meaningful input into all stages of the research life cycle. The applicants state that the principles of participatory health research  will be used to inform how PPI representatives would be supported in the proposed research. This will be bolstered by the provision of training for PPI representatives via the annual University of Limerick PPI Summer School (which is open to anyone).

The applicants’ impact statement presents anticipated outcomes, clinical significance, and impact on clinical practice. The applicants state that their PPI approach, through thorough consultation with people with CF, health care representatives and representatives of CF Ireland, will generate long-term impact on guideline development, practice change, and parental involvement in improvement of dietary quality in CF over the longer term. 
Finally, the dissemination and knowledge exchange plan includes a strong focus on PPI, with target stakeholders including people with CF and their families and patient organisations. The dissemination strategies proposed by the applicants are based upon continuous engagement with patient representatives and service users, involving a wide range of dissemination channels (newsletters, dedicated website, information seminars, and advocacy campaigns) and a layperson’s summary for distribution to key stakeholders.

Strengths of the PPI plans in this application  

This case study is an excellent example of how to integrate PPI throughout the lifecycle of the proposed research. PPI is incorporated from the very inception of the research study, from defining the research topic through to selecting suitable measures and devising questions for the focus groups, to project management, and finally to shaping the impact of the research and dissemination of findings. 
Particular strengths in this approach are initiating PPI well in advance of preparing the application, the inclusion of PPI specialists and collaborators as formal co-applicants on the application, building on the results of a James Lind Alliance priority setting exercise to inform data collection measures, setting up a PPI advisory group to oversee and shape the PPI input into the proposed project, leveraging training for PPI representatives and securing ongoing PPI support via the PPI Ignite team at the University of Limerick .  

Suggestions for future applicants

  1. Kickstart plans for your application through an initial workshop or meeting, including the research team and patients, carers or members of the public that are relevant to your research. These same people might subsequently become part of your management team or advisory group. 
  2. The need for incorporating an inclusion and diversity approach to PPI is becoming increasingly important, and it would be worthwhile to set out relevant steps that applicants would take to help ensure their PPI approach is inclusive and welcomes diversity.  
  3. The cost of covering expenses for PPI contributors, associated with their activities on the projects, should always be included in the budget section of funding applications. It is worth also considering offering a payment or token of appreciation for the time of the PPI contributors, which is a tangible appreciation for their input and can help with recruitment. It is a good idea to consult with them, along with your research office, to assess what form of reimbursement or payment is most appropriate. 
  4. Finally, it should be noted that PPI is not a one-size-fits-all endeavour, and not all aspects of the PPI described here may be suitable for use in other types of research such as lab-based research. 


Case Study 2: Irish Nephrology Society/National University of Ireland Galway: Immune Profiles of Adverse Clinical Trajectories in Diabetic Kidney Disease

This case study presents an example of an application to the Joint Funding Scheme that, while not ultimately funded by the scheme, was deemed fundable by international reviewers who specifically singled it out as having an excellent approach to PPI.

Background to the case 

The role of the Irish Nephrology Society in the application The Irish Nephrology Society’s purpose is to promote education in the field of nephrology and to foster research in nephrology. Its mission is to ensure a high-quality standard of care for patients with kidney disease by promoting the highest standard of medical practice. The society participated in the 2019-2020 round of the HRCI/HRB Joint Funding Scheme.  One of the applications that was assessed for co-funding (with the HRB) was a proposed project designed by researchers from the National University of Ireland Galway (NUIG) on immune profiles of adverse clinical trajectories in Diabetic Kidney Disease (DKD). 

The proposed research project 
The aim of this proposed project was to advance the use of new blood tests for inflammation to help identify and treat DKD from its early stage, and to learn how this new knowledge can be best incorporated into clinical care settings that match patient expectations and preferences. The applicants proposed a mixed-methods design, gathering clinical data via 4 study visit clinics and conducting a survey to gather data on patient preferences for early-stage DKD monitoring. Qualitative data were to be gathered via PPI collaborators, 3-4 patient focus groups and 5-10 individual interviews.   

Setting out the PPI approach in the application form 

PPI was integrated as a core aspect of the proposed research in the application and the research team included PPI expertise and collaborators. The proposed team was led by Professor Matthew Griffin, Professor of Transplant Biology and Consultant Nephrologist in the School of Medicine, National University of Ireland Galway (NUIG). He was supported by 3 co-applicants and 6 collaborators. Members of the research team with specific experience in PPI included Professor Seán Dinneen, Professor of Diabetic Medicine and Consultant Endocrinologist and the Lead for the new National PPI Ignite Network, Dr Michelle Queally, Lecturer in Economics, who was appointed “Public Patient Involvement Catalyst in Economics” at NUI Galway in 2018, Ms Edel Murphy, Programme Manager with the National PPI Ignite Network, and Ms Anne Daly, a nutritional health coach who lives with type 1 diabetes and was a PPI collaborator on the project team. The overall PPI approach set out by the applicants was shaped by Edel Murphy and Anne Daly. 

Notably, PPI was incorporated as a core objective of the proposed study in this application. This was first set out in the project abstract and was discussed in more detail in later sections. 

The section on current knowledge and background to the proposed research discussed PPI in relation to the contribution that the multi-disciplinary research team’s expertise and track record in PPI initiatives could make to developing optimal approaches to the monitoring and management of early stage DKD.  

In the section describing the aim and objectives of the proposed study, PPI was incorporated through collaborating with a group of patients and the public in order to develop patient-informed information and consent materials, develop a “messaging strategy” for the research, deliver a patient information event to inform patients about the proposed research, and develop themes and a design for a focus group. 

The applicants describe in more detail their proposed PPI activities in the section on research design and methodological approach. They set out the need to incorporate PPI from the initial phase of the project and the applicants had liaised with PPI Ignite @ NUIG who developed a methodology that would be used to form a public and patient advisory panel consisting of 4 adults with Type 2 Diabetes Mellitus (T2DM) and 2 family members. PPI activities were also represented through collaboration with PPI Ignite @ NUI Galway to host a Patient Information Event. The applicants emphasised that they had already started to establish the PPI advisory panel in advance of submitting the application.  

The section on public involvement in the research project set out a detailed description of the proposed PPI approach. The applicants also described the role of the PPI advisory group across the proposed research study in more detail. They set out 5 main tasks for the advisory group:  

  1. Developing a DKD information package for people with T2DM and their family carers using clear, accessible and tailored language and key messages. 
  2. Developing participant information and consent materials for the study. 
  3. Planning the focus groups: identifying who should attend, determining how best to recruit participants, and developing recruitment materials. 
  4. Preparing the survey component of the discrete choice experiment and influencing the final wording used in the survey to ensure it was relevant and accessible to people with T2DM. 
  5. Interpreting the results of the discrete choice experiment and developing a plan for sharing the results of the study with participants. 

As part of the impact statement the applicants stated that their PPI approach would result in patient-informed information and learning resources about early stage DKD that would improve communication between health care professionals and people at risk of DKD.  

The dissemination and knowledge exchange plan included a strong focus on PPI and specified patients with DKD, their family carers and patient representative organisations as specific audiences for the outputs of the proposed research. The applicants pointed to the direct collaboration with patients and families as a key strength of the approach to dissemination and knowledge exchange. This was complemented by the proposed Patient Information Event to extend dissemination to the wider target population, along with a multi-pronged approach targeting patient representative organisations, social media, and patient networks. It was planned to enhance this through the support of PPI Ignite @ NUIG and PPI collaborators on the research team. Finally, it was proposed that dissemination of the outputs of the research to the public would be optimised by participation of members of the research team in events organised by an education and public engagement programme (CÚRAM). 

In the section detailing personnel to be funded through the project funding for a dedicated qualitative researcher was requested at 50% FTE. The applicants also took the opportunity to highlight the importance of the role that PPI Ignite @ NUIG would play in providing the necessary PPI expertise, resources and experience in the section on host institution infrastructure and support.  

Notably, the project budget included costs for patient collaborator meetings across years 1 and 2 of the proposed research and included typical compensation for time and travel of patient collaborators along with the cost of refreshments.

Strengths of the PPI plans in this application  

This case study is an excellent example of integration of PPI throughout the research lifecycle from the planning and development phases, through recruitment, data collection, to data analysis, ensuring impactful research and dissemination of the results. Integration of PPI was also achieved by the incorporation of PPI as a core objective of the study. This ensured that PPI was recognised as an integral part of the proposed research, rather than a more superficial exercise run in parallel with the study.  
Other strengths in this approach were the inclusion of PPI specialists as core members of the research team, the concrete specification of how the research team would contribute to the PPI approach, the inclusion of PPI across many different sections of the application form, setting up a PPI advisory panel to oversee and implement PPI at all stages of the proposed research, and the development of a multi-pronged approach to dissemination and knowledge exchange that leveraged the resources of team members and of PPI Ignite @ NUIG. 
Notably, the resources required for successful PPI were meticulously accounted for through the specification and costing of funded personnel the detailing of the resources and support offered by PPI Ignite @ NUIG, and the costing of PPI collaboration meetings. 

Suggestions for future applicants 

  1. It may be useful to kickstart plans for your application through an initial workshop or meeting, including the research team and patients, carers or members of the public that are relevant to your research. These same people might subsequently become part of your management team or advisory group. 
  2. It would be worthwhile to set out relevant steps that applicants would take to help ensure their PPI approach is inclusive and encourages diversity.  
  3. You may wish to consider a priority-setting exercise to identify the top research priorities for your target patient group, and/or to refine your chosen research topic into a research question that is impactful, timely, and relevant to the member charity, patients and the public. 
  4. It should be noted that it is possible to do PPI in lab-based research, although this may pose different challenges in comparison with clinical research. PPI in lab-based research can help identify research priorities, add meaning and value to the research by linking it directly to the human needs and experiences of patients, help you think differently about the condition you are studying, raise questions that you may not have thought of, and inform the direction of future research. An online guide (https://sites.google.com/parkinsons.org.uk/ppi-in-lab-based-research/home?authuser=0)  has been produced by Parkinson’s UK, the Alzheimer’s Society and the NIHR in the UK on how to conduct PPI in lab-based research.  
  5. Many of the HRCI member charities are skilled in PPI and the charity that you are submitting your application to might be able to advise or support your PPI. If you are based in an Irish university, your local PPI Ignite team will also be able to advise.  

Further information 

For further information on the work of HRCI on PPI and the HRCI/HRB Joint Funding Scheme, please contact Dr Sarah Delaney, Research Support Officer, Health Research Charities Ireland, email sarah@hrci.ie.  
 

Close