Conference on public involvement in medical research

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A conference on Public and Patient involvement involvement in medical research will take place at NUIG in the coming weeks.

There have been shifts in Irish medical research lately, with more and more patients involvement in determining exactly what should be researched, how it should be carried out, and helping communicate the results.

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.

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, Director of  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.”

This type of partnership takes advantage of the first hand experience that patients have with their conditions which researchers can take advantage of.

Prof Seán Dinneen, Consultant Endocrinologist at NUI Galway and UHG said PPI Ignite is about providing support and training to researchers to build partnerships to direct research.

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”.

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.

This conference will take place on May 1 from 10am-4pm at the Institute for Lifecourse and Society (ILAS), North Campus, NUI Galway.

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.