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