Impressions on Involvement in Ireland
I thoroughly enjoy my visits to Ireland – the people, the country and especially the conversations. I am interested in how Ireland engages and involves people with, in and for better health to improve health services and research.
In Ireland, the involvement of patients and the public in research and health somehow seems more personal, more collaborative and transformative in its thinking and practice. It is becoming a pillar of good practice for quality research, services and care.
This post is my attempt to explore and identify some of the key elements that underpin what is happening in Ireland especially with health research. It also reflects a talk I gave at a Health Research Board, Ireland (HRB) lunchtime seminar early in March 2020.
The key differences between Ireland and the UK seems to be that of INTENT – the purposeful attention in Ireland to aspire and achieve change in the health of the population.
The approach taken in Ireland appears to be far more about improving people’s health and well-being rather than just getting people involved and providing support. There is an acceptance that the culture of research needs to be more focused around the needs of the population. There is a determination to encourage people to know more about how health research plays a part in people’s lives. There is a resolve to support patient advocacy and a greater understanding amongst researchers and scientists of the benefits of this commitment.
Each of these descriptions are fundamentally about thinking and learning – from and about each other’s experience, knowledge and skills. It is far from patients just being involved on a one-way street to help the research process. It is about reciprocity – a give and take with all sides – to learn and develop together.
Jerome Bruner, the educationalist, describes education as a two-way process and that we are never just filling empty vessels but sharing experience and knowledge. Bruner states that the goal of education should be intellectual development – the thoughtful process of learning from experiences. This aptly captures what I am seeing.
Ireland has thought carefully about its approach and seems keen to encourage everyone to learn and use health research – that it forms a natural part of both intellectual and personal development.
Health research in Ireland is doing just that by sparking ideas, developing people, changing institutions – all with the intention and prospect of improving health. The HRB are playing a vital role in making this happen through the HRB PPI Ignite programme. (May 2017). It has at its heart a sense of enquiry by inviting all to contribute, collaborate and share.
In Ireland, all of this is ably supported by the excellent work of the Health Research Charities Ireland (HRCI) and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) *. Their leadership, partnership approach and support of patient advocacy are also instrumental in the increased focus on people’s health and wellbeing.
In the UK, I feel we have used Patient & Public Involvement too much as the pursuit of an answer rather than opportunities for open enquiry. We have faltered in the procedural aspects of the development of a research protocol rather than the intellectual development of individuals, patients and professionals, with the joint pursuit of issues that matter to people’s health and wellbeing.
“I was elected by the women of Ireland, who instead of rocking the cradle, rocked the system.”
Mary Robinson’s quote reminds us of the need for equality and diversity, the desire to act differently and the requirement to sometimes disrupt the way things work. Ireland’s approach to health research is just that – imaginative, creative and gently rocking the system.
The START competition, led by the Trails Methodology Research Network (HRB-TMRN) does all of these things (click on the word if you don’t know anything about it). START offers the opportunity for young people and schools to engage and become researchers. (Currently postponed because of Covid-19 but you can still read about it).
Too often, the word research comes after the diagnosis of life-threatening illness when we are approached to take part in a study. Whilst we are trying to cope with a diagnosis, taking part in a research study is another thing to consider. It may even be the first time we have had to realise that our health services don’t have all the answers although Covid-19 has rapidly shifted that perspective.
START changes the order of things and moves the cradle of research out from academic institutions. It introduces research at an early age. Through START, pupils in schools are the researchers – choosing the question, running the study, learning about the importance of valid evidence. They are asking their own questions, learning about the precision required, potential bias and the importance of language and methods.
These are the exploration of the high order skills in learning of hypothesis, analysis and interpretation; allowing young people to read with critical appraisal, to judge and challenge. This is Bruner’s intellectual development in action. You can read further here.
This isn’t something called ‘patient and public involvement’ – it is quite simply research for all, reaching out as opposed to a couple of patient representatives on a committee. It is research being meaningfully tried and used – in, for and by the community.
Whilst in Ireland, I met Prof Mary McCarron who has throughout her career worked with adults with intellectual disability with the IDS-TILDA study. Prof McCarron talks about how she has always engaged with those who are intended to gain from her research and their families. Such an approach is seen by her as being the most normal and natural thing to do. It is not some ‘patient and public involvement’ – it is simply the sensible thing to do for good quality research.
I began my talk at HRB with W B Yeats quote that ‘education is about lighting the fire, not filling the bucket’. I had used it previously in Galway as it captures the central principle of collaboration that is so evident in Ireland.
The PPI ignite programme, from HRB Ireland, is such an inspired approach. It looked upon the existing good practice within certain initiatives and the work a number of people. A number of Universities were awarded PPI Ignite funds after submitting applications.
It is an enquiry-based approach which is inclusive. It starts by asking the central question – what could we do to improve people’s health and wellbeing by involving the people of Ireland in matters of research? It advocates partnership working and asks a number of questions…
How can we build capacity? How can we meaningfully involve and engage members of the public and patients in the research? How might we promote interactions that are seen as fruitful and beneficial by both researchers and PPI contributors?
It did not set out to form a committee, fund central staff nor see it as a service. HRB became the host of a conversation, the educator inviting enquiry.
PPI Ignite illustrates, what I believe to be, a LEARNING CULTURE – from concept to operation. It does not advocate one single answer but accepts that there may be alternative approaches for different circumstances or contexts. This ignites people’s imaginations as a process of change rather than the product of a transaction.
Most recently, it has ignited The People’s Trial (funded by the Health Research Board, through the HRB-TMRN, as a Knowledge Exchange and Dissemination Scheme (KEDS) Award 2018).
In my talk to the HRB I choose a few examples of where I thought they were doing things differently. I sought to identify the key aspect of the LEARNING PROCESS as well as the impact.
MUTUAL LEARNING – At University College Dublin, Elaine Quinn, the Institute Manager for Communications & Education at UCD Conway Institute of Biomolecular & Biomedical Research, explained to me about a workshop where researchers submitted their lay summaries for comment. These were then circulated to patient partners who took coloured pens to mark the words, phrases and layout they didn’t comprehend.
The researchers and patient partners were then brought together to exchange knowledge and learn from each other. The researchers learned how to describe their work in lay language and the patients about medical terminology.
Later, the Researchers were asked to present what they had learned from this experience which helped others think about how they might benefit from talking with patients and the public. This approach and the presentations helped reinforce the learning and helped the patient partners hear about the difference they had made. These workshops have since been rolled out in Cork and Galway.
SHARED LEARNING – The way people shared experiences was the second impression I gained. I had the opportunity to attend a lunchtime open surgery for researchers about patient and public involvement. It was led by Michael Foley is the Research and Development Officer with the Trinity Centre for Ageing and Intellectual Disability (TCAID).
The format of so many meetings and workshops is that the person working on patient and public involvement is that of telling people what involvement is about or doing the involvement on behalf of the researchers.
Michael as educator started from what the learners wanted to know and encouraged them to share what they had been learning.
This was very much about researchers learning from each other, being ably facilitated by Michael. This was about the change taking place in the research community, hearing about how others had involved people in their research and the benefits they had gained. The learning focussed on involving people as an essential ingredient of good quality research not an added activity.
EXPERIENTIAL LEARNING – The final example, I gave, revolved around some of the work at NUI Galway I have seen from Edel Murphy, the PPI Ignite programme manager and leader of the organisation of their annual Conference.
This event (this year online) has patients using their health as the pivotal experience to improve research and patient outcomes. These ‘lightning talks’ were far more than just telling of the experience or about the process of involvement – they were about advocacy and improvement to people’s health.
It was at the Conference that I first heard about the Community Engaged Scholars programme which sets out to develop partnerships between researchers and community organisations interested in conducting research together that aim to improve the health of their community.
This focus on community action means that the changes in health are more likely to be adopted by local people rather than taking one or two patient representatives on to a committee.
Last year’s Conference was held, appropriately, at the NUI Galway Institute for Lifecourse and Society. The Institute supports applied research that informs policy development and practice to make a positive difference to people’s lives. It also excellent public transport links and parking.
These visits to Ireland and especially to PPI Ignite Galway confirm to me that it is health that matters; that engaging the public is about making research accessible; for people to use research evidence as means of helping their own care and that of others.
David Kolb, the educational theorist, defines learning “as the process whereby knowledge is created through the transformation of experience” (Kolb, 1984, p. 38).
The clear intent in Ireland is transformational – to change people’s lives by trying things out, reflecting on the experiences, abstracting the concepts and then carrying out further actions.
Patient experience is a valid starting point but it is ultimately how it is transformed to become a driver for health improvement that becomes the essence of change. We cannot just bring our experience to the table and expect change to happen. Patient and Public Involvement in Ireland is neither viewed as a service nor is it a one-way street. It is about the opportunity for the public/ patients and the professionals to learn rather than just about improving research proposals.
These are all about LEARNING as ENQUIRY – a joint exploratory process, a spirit of unity and cooperation – not a service or a product.
As hosts of the enquiry, I suggested to HRB, they might like to think about certain questions in future…
- Improving Health – what areas of health need to be tackled?
- Leadership – why do some leaders ‘get; involving people?
- Equality and Diversity – whose voices are not being heard?
- Transparency – how do we increase openness?
- Artificial Intelligence and Digital Technology – how are the public engaged?
Following trip to Health Research Board –
The actual purpose of my recent visit in early March was to attend the Trinity Health and Education Conference Trinity College Dublin 2020 on Integrated Healthcare. I will be writing a complementary piece about a workshop I attended.
* HRCI is the national umbrella organisation of charities active in medical and health research.
* IPPOSI is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of health innovation.
Declaration of Interests
Derek Stewart has advised on the work at NUI Galway, has facilitated workshops at University College Dublin and spoken at Trinity College Dublin. He is on the Advisory Board for Evidence Synthesis Ireland and is also nominal lead for NIHR MRC Trials Methodology Research Partnership