Apr 11 2017 Posted: 15:17 IST

NUI Galway will hold a conference focusing on Public and Patient Involvement (PPI) in healthcare research on Thursday, 27 April from 10am-3.30pm in the Institute of Lifecourse and Society (ILAS) Building.

PPI involves an active partnership between members of the public, patients, researchers and doctors to ensure that the voice and perspective of the public or patient influence all stages of the research process.

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, about how to design studies that are sensitive to the needs of patients and how to share the results of studies in language that is understandable and through media channels that are popular with the public. 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.

Attendees at the conference will hear from Catriona Dunne, an NUI Galway graduate, who lives with impaired vision, about her experience of working with lab-based researchers investigating treatments and cures for blindness. Caitriona said: “People affected by a condition are experts in their condition already from their experiences of living with it day to day so they have a lot of valuable information to offer to scientists, healthcare professionals, policymakers, industry and others. However, it’s not always easy to know how we can do this and where we can get involved in the processes. Patient education courses provide an opportunity for lay people to learn how the research systems work and how they can get involved and give the patient perspective in an effective and meaningful way.”

A local group consisting of members of the public from Galway city and county, will describe their experience of working hand-in-hand with NUI Galway researchers in primary care, helping the researchers to plan and conduct research that takes the voice of the patient into account. 

Denis Mockler, a member of this group, said: “I have been involved with researchers at NUI Galway for the last year – we all come from different places, we all have different lived experience of dealing with doctors and the healthcare system and we draw on this experience from the patients point of view to help researchers to ask questions that matter to the patient and to communicate in language that the patient can understand. I feel we are making a difference, it’s all about collaboration.” 

Katie Scott from UK Cancer Research will also give a keynote presentation about a culture change in that organisation to ensure that all research is driven by the voice of the cancer patients, survivors and carers. A series of workshops at the conference will show researchers and members of the public how to build meaningful partnerships and collaborate to bring about change.

The conference is open to members of the public, researchers, doctors and all healthcare professionals with an interest in research and in hearing the voice of the patient.

The conference is organised by the HRB Primary Care Clinical Trials Network Ireland, a collaborative group of researchers conducting clinical trials through general practice and primary care, with support from the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) and the HRB Trials Methodology Research Network.

Registration is essential. For more information visit www.primarycaretrials.ie, email info@primarycaretrials.ie or contact Edel Murphy, NUI Galway on 091 495308. 

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