An NUI Galway graduate who has impaired vision, will this morning (Thursday ) speak about her experience of working with laboratory based researchers investigating treatments and cures for blindness, at a conference at NUI Galway.
Caitriona Dunne will address the event which focuses on public and patient Involvement (PPI ) in healthcare research today (Thursday ) from 10am to 3.30pm in the Institute of Lifecourse and Society (ILAS ) Building.
People affected by a condition are already experts on it due to their experiences of living with the issue from day to day, she says.
“They have a lot of valuable information to offer 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 the city and county, will describe their experience of working hand-in-hand with NUI Galway researchers in primary care, helping them to plan and conduct research that takes the voice of the patient into account.
Denis Mockler, a member of this group, says he has been involved with researchers at the university for the past 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 patient’s 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 of UK Cancer Research will give a keynote presentation about a culture change in the organisation which ensures that all research is driven by the voice of 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.
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, 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.
The conference is open to the public, researchers, doctors and 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.