The fifth national Public and Patient Involvement (PPI ) in Research Conference, hosted by NUI Galway, will take place on Wednesday, 6 May, but this year all attending will join online. In addition, to members of the research community, there is a particular welcome to the public, patients and to patient and community organisations.
At a time when researchers worldwide are in a race against time to understand the COVID 19 virus and to find effective treatments, or better still, a cure, researchers at Irish universities are rising to the challenge. But with research projects being set up very quickly, in many cases backed by significant public funding, now more than ever it is important that one vital voice – that of the public and patient who will be impacted by research results – has a place at the research planning table.
The conference, jointly hosted by the HRB Primary Care Clinical Trials Network Ireland and PPI Ignite at NUI Galway, will showcase many examples of PPI in research, that is, how public and patients are working in partnership with research teams, ensuring that the research conducted is more relevant for patients and that the research focuses on improving things that matter most to patients.
Importantly, PPI contributors, those who bring the public and patient voice to research, can contribute greatly to making sure the results of the research are shared with the public in non-technical language and are used to bring about change.
The theme of the conference is ‘PPI across the lifecourse’. The conference will open with a focus on the importance of hearing the patient voice when using research results to influence health policy, illustrated by the voice of people with dementia and their carers in shaping the national dementia policy. In contrast, young people from the Mayo Tusla Children and Young People’s Advisory Group, will discuss how they shaped research about social media use among their own age group.
Anne Lennon Bird will share her personal experience of Huntington’s Disease, and describe the journey of a small patient organisation, initially set up to provide support to families, that has now become involved in the international research arena.
Society as a whole has rapidly got up to speed with online technology, and moving the conference online is a major step that has been welcomed by PPI contributors. Anne Daly, a health coach, specialising in diabetes and thyroid health and a PPI contributor, working with a number of research teams at NUI Galway, said: “I am very happy to be involved with PPI, which is mutually beneficial for both researchers and myself as a public representative in research. It is good for all concerned that this conference has gone ahead despite the current challenges. Where there’s a will there’s a way! It’s reassuring that PPI is being included in COVID 19 related research projects and that researchers have not just abandoned us PPI contributors due to the urgency of COVID 19. My PPI colleagues and I expedite all requests at this this critical time.”
Denise Dunne from Croí, the heart and stroke charity, and NUI Galway’s Dr Chris Noone will share their perspectives of developing a PPI partnership, through a new Health Research Board (HRB ) funded programme.
Ms Dunne said that involvement in the CES-P project has been a great opportunity for her, both professionally and personally.
“it is great to really get patients involved and not just pay lip service to the process. It has been eye opening for me and it is now also fully embedded in our research processes at Croí, feedback from patients has been one of a real openness and positivity to the whole process and we plan to continue a Croí PPI panel into the future,” she said.
Contributions from members of the ME/CFS Association of Ireland and the Endometriosis Society of Ireland and researchers they worked with will highlight the important differences well-conducted PPI can bring to the quality and impact of research. To close out the conference, Professor Sean Dinneen, who leads PPI at NUI Galway, will reflect on how and why it is so important that PPI continues in this time of pandemic, and that the voice of the patient is maintained in the swathe of new COVID 19 studies being pursued.
Casey Donaghey, one of three PPI contributors on the conference organising committee said: “Having a voice in these weird times was a blessing. Being able to move the conference online and still reach people was very important to us, and I’m glad we all (people and researchers ) could work together to do it.”
Registration for the conference is free, but essential and can be done at www.eventbrite.ie or at the PPI conference section of www.primarycaretrials.ie A test run will be done in advance to allow people to make sure that they know how to connect into the conference on the day. For more information [email protected] or [email protected] .