Conference to explore role of public and patient involvement in research

NUI Galway is hosting the fourth national conference on Public and Patient Involvement (PPI ) in research on Wednesday May 1. The theme of the conference this year is Progressing Together, reflecting the continuous learning and growth of the PPI community.

There is 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, so hearing from patients about the reality of living with a particular condition provides a powerful insight into what matters most to patients.

Patients are experts

Attendees will hear about PPI from various different perspectives, including from 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.

This year, there will be presenters 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” - what he considers to be the key elements of successful partnership working from a patient’s perspective. Derek was treated successfully for cancer of the larynx in 1995. A former teacher working with challenging pupils, Derek became involved in numerous aspects of patient involvement at a local, network and national levels.

Dr Avril Kennan, CEO of the 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.

“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. Very excitingly, we have a plan to bring the findings from the workshop to policy and decision makers, in the hope of making health research work better for everyone,” said Dr Kennan

The PPI conference is open to members of the public (free of charge ), researchers and all healthcare professionals with an interest in research and in hearing the voice of the patient. The conference will be streamed live on the day, so if you are unable to attend, join the proceedings online at www.primarycaretrials.ie

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.

“The public and patient voice needs to be listened to and heard, in order to ensure that or research is effective and meaningful for patients” – says Professor Andrew Murphy, NUI Galway, who is the Director of the Network.

Culture change

Part of a national programme that sees five universities funded by the HRB, PPI Ignite @ NUI Galway aims to bring about a culture change in how health research is conducted across the university by working in partnership with patients and the public.

Professor Seán Dinneen, a consultant endocrinologist, is the leader of this programme and says, “PPI Ignite @ NUI Galway is providing training and support to help researchers and patients understand what PPI is and why PPI 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.

The conference takes place in NUI Galway, in the Institute of Lifecourse and Society (ILAS ) 10am-4pm.

The conference is supported by the HRB Trials Methodology Research Network and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI ).

Registration beforehand is essential: for more information, check out www.primarycaretrials.ie, email [email protected], or contact Dr Nikita Burke, NUI Galway on 091 495308.

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