Thursday, 18 April 2019

Conference on Public and Patient Involvement in Research - Hearing the Voice of the Patient

NUI Galway is holding the fourth national conference on Public and Patient Involvement (PPI) in research. The theme of this year’s conference is Progressing Together, reflecting the continuous learning and growth of the PPI community. The conference takes place in the Institute for Lifecourse and Society (ILAS), North Campus, NUI Galway from 10am-4pm on Wednesday, 1 May. There’s a sea-change in health research in Ireland: more and more patients are working with research teams to help decide what exactly should be investigated, how research should be designed and conducted, and how research results should be communicated. PPI involves an active partnership between members of the public, patients, researchers and doctors to ensure that the voice of the public or patient influences all stages of the research process. Patients are experts in their illnesses and carers have important knowledge gained from all that they experience. Researchers often do not have personal, lived experience of what they are researching, and hearing from patients about the reality of living with a particular condition provides a powerful insight into what matters most to patients. Conference attendees will hear about PPI from various different perspectives, including people living with conditions such as Alzheimer’s disease and Type 1 Diabetes; the parent’s perspective; the patient’s voice in healthcare; and the use of health data for research. The conference is jointly hosted by the HRB Primary Care Clinical Trials Network Ireland and PPI Ignite @ NUI Galway. The HRB Primary Care Clinical Trials Network Ireland is a collaborative group of researchers conducting clinical trials through general practice and primary care. Professor Andrew Murphy, NUI Galway and Director, HRB Primary Care Clinical Trials Network Ireland, said: “The public and patient voice needs to be listened to and heard, in order to ensure that our research is effective and meaningful for patients.” Professor Seán Dinneen, Consultant Endocrinologist at NUI Galway and UHG, and leader of this programme says: “PPI Ignite @ NUI Galway is providing training and support to help researchers and patients understand what PPI is and why it matters, and how to build partnerships that allow the public and patients to influence the research we conduct. Patients want to help and have an impact. PPI Ignite @ NUI Galway will help bring this about.” Presenters will attend from the UK, Denmark and the US, including Professor Carolyn Jenkins (Medical University of South Carolina) and Derek Stewart (OBE). Derek is a patient advocate from the UK who will be speaking about “Sustaining PPI – getting the balance right” and what he considers to be the key elements of a successful partnership working from a patient’s perspective and challenging the notion of the “usual suspects”. He will also provide expert feedback as part of a panel for short oral presentations on PPI.  Derek Stewart, said: “I am really looking forward to coming back to Galway. The PPI Ignite @ NUI Galway initiative in Ireland is one of the most exciting and innovative approaches to improving people’s health.” Dr Avril Kennan, CEO, Medical Research Charities Group will deliver a workshop titled “Should researchers be trusted with your health data?” - where attendees will share how they would like to see their health data managed. Avril Kennan said: “The law has changed recently so that scientists must fully inform patients how their health data will be used for research. There are positives and negatives to the new ways of working and we want to tease out what patients think about them. We have an exciting plan to bring the findings from the workshop to policy and decision makers, in the hope of making health research work better for everyone.” The conference is free and open to the public, researchers and all healthcare professionals with an interest in research and in hearing the voice of the patient. The conference will also be streamed live on the day from: www.primarycaretrials.ie. Registration beforehand is essential and for more information, visit: www.primarycaretrials.ie or email info@primarycaretrials.ie, or contact Dr Nikita Burke, Development Manager with HRB Primary Care Clinical Trials Network, NUI Galway on 091 495308.  The conference is supported by the HRB Trials Methodology Research Network and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI). -Ends-