The important role that members of the public can play in healthcare research will be one of the key issues discussed at an event being held in the city next week.
The conference, which will focus on public and patient involvement (PPI ) in research, takes place at the Westwood Hotel on Wednesday from 10am to 3.45pm.
It is being organised by the Health Research Board’s Primary Care Clinical Trials Network Ireland, a collaborative group of researchers conducting clinical trials through general practice and primary care.
The event will be addressed by a number of experts, including Professor Sean Dinneen, a consultant endocrinologist at Galway University Hospitals and the head of the School of Medicine at NUI Galway, Professor Andrew Murphy, the director of the HRB Primary Care Network, a professor of general practice and a GP in Turloughmore, Professor Mary McCarron of Trinity College, and Dr Anne Cody of the Health Research Board.
PPI involves an active partnership among the public, patients, researchers and doctors to ensure that the voice and perspective of the public/patient influences all stages of the research process, explains Edel Murphy, the development officer of the Health Research Board’s Primary Care Clinical Trials Network Ireland.
“Involving the public and patients in planning and conducting research ensures that the real life experiences of patients are considered when decisions are being made about what research should be done and about how to design studies that are sensitive to the needs of patients. Researchers may not have had personal experience of the condition they are researching so hearing from patients about the experience of suffering from a particular illness or of living with a particular condition provides a powerful insight into what matters most to patients.”
The conference showcases how people with intellectual disability, young adults with diabetes, people with aphasia (a language disability that can occur after a stroke ) and a dementia family carer have all contributed richly to research in those areas.
“Patients and the public always offer unique, invaluable insights that help shape our research - we need to listen,” says Professor Andrew Murphy.
Professor Sean Dinneen will address the conference on the importance of engaging young adults to “re-imagine their diabetes care”. Up to 170 people aged 18 to 30 attend UHG’s monthly diabetes clinic. While some “fly” through their diagnosis and managing the condition others find it a “burden”, he says. They have difficulty “getting their heads around it”.
He believes that the way diabetes care is delivered in a traditional hospital setting does not work for some young adults.
“We ask them to come into the diabetes clinic and sit and wait to be called in. They may not have continuity, they don’t always meet the same person. Even the fact that they have to come into a hospital can be difficult. We are labelling them. Maybe if we met them in a neutral venue. If you look at the Jigsaw building [the organisation which supports the mental health and wellbeing of people aged 15 to 25 at Fairgreen Road], it is a lovely building. The diabetes centre...it isn’t a nice building.
“Young people with diabetes are the Facebook generation, what is important to them generally is to be the same as their peers, they feel that having diabetes makes them different, it sets them apart. We must see the world from their standpoint, for a lot of them diabetes is not an easy condition to live with.”
He stresses the importance of looking at new systems of care delivery and viewing these in a “brave” and “imaginative way”
“We are only beginning to shape this new system of care. It’s getting us to think about what is diabetes care. There are two aspects; what we do medically is done very well in hospital. In relation to support, ie, helping them live well with a chronic disease, this is not always done well in a hospital setting. That aspect is what we are looking at.”
Researcher Mary Clare O’Hara points out that the non attendance rate at the diabetes clinic is 30 to 40 per cent or higher.
“Quite a few young people do not come to the clinic for lots of reasons. Some may be due to administrative issues - the appointment may be sent to the wrong address as these are a mobile group. Non attendance may partly be due to the fact that they find the service and the way it is delivered non engaging.
“The majority of diabetes centres in Ireland are linked to teaching hospitals, there is quite a lot of rotations of doctors. Those attending the clinic often meet a different face when they attend appointments and they have to repeat the same story.”
She outlines that a young adult panel was formed in conjunction with Jigsaw in February 2014. Young people with Type 1 diabetes were invited to take part in the 30 month initiative (it concludes in June ) which aimed to improve the health and wellbeing of those living with the condition. The panel, which allowed them to have a voice, worked with a research team as part of the project, which was the first of its kind in the country.
“What was unique about our study is from the onset when the panel was formed it has influenced and contributed to all aspects of the study.”
Ciara Keighron, a student at NUI Galway who is co-presenting with Professor Sean Dinneen at the conference, says she is part of the panel of young adults with Type 1 diabetes.
“We are working with researchers at the university to help develop a new model of care and better approaches to self-management for people like me. I am excited to think that I can contribute to making life better for other young adults with T1 diabetes.”
