Nothing Without Us: Considering Public Patient Involvement in Research

Social Technologies

Author:  Joan Alaboson is a Doctoral Researcher in the Department of Psychology, Maynooth University. She has a background in medicine and an MSc in Public Health with broad research interests in non-communicable diseases, particularly mental health, social determinants of health and quality of life.

Joan Alaboson
Joan Alaboson

‘What can be done to make settling into the PhD, better?’ asked Dirk, the Director of the Science Foundation Ireland’s Centre for Research Training in Advance Networks for Sustainable Societies (ADVANCE CRT) at a meeting with funded PhD students. Being the only one in the room that had recently commenced my studies, at that moment I felt there was a deep sense of concern for my well-being by ‘management’. It was the first of such fora I’d attended, and I left with a lasting impression of being in relatable company during my studies.

True inclusion, however, could often be elusive, despite best efforts. There is hardly any organization, entity or group that does not seek to represent the interests of those concerned. It may be expressed in a vision, mission, goals, or activities. Yet, many can be left out. Sometimes, it is a fault inherent in group development, when diverse people are not present to consciously bring unique perspectives to the fore. Similarly, it may result from work protocols or culture that fail to recognize and may neglect, systematically, the views and or needs of diverse people.

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Including Patients and the Public in Research

Stories/Lived Experience

Author: Jamie Howell; PhD researcher, Department of Psychology, Maynooth University

Animation, 6 people on a blue background 3 healthcare practitioners 2 elderly people 1 person in a wheelchair and a female.
BioMed Central-

In recent years, health researchers have begun to embrace the concept of patient and public involvement (PPI). Rather than conducting research on or for various populations, we have begun to move towards working with patients and the public by prioritizing their needs and concerns. This allows researchers to learn from those who have lived experience and can help them design research projects which are more beneficial to the population being researched.

I first heard of PPI during my MSc, when my supervisor, Dr Rebecca Maguire encouraged me to include aspects of PPI in my research. Dr Maguire has worked as both a researcher and as a patient advocate, and her expertise has been invaluable to my own research.

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