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.
‘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.
Personally, I had the opportunity to appreciate the true value of inclusion in my practice providing primary care to clients with chronic diseases some years ago. ‘Mr X, are you following the eating plan developed by your dietician?’ I asked. His response was convincing. ‘Yes, of course Doc’. ‘Vegetables and loads of it’ he went on. Yet, his numbers (a monitoring test result) revealed an opposing message. Sadly, Mr X was evidently non-compliant. He was a middle-aged man involved in supplying consumables to a chain of hotels in a bustling city. Perplexed, I enquired about the details of his job and found he left home early and returned late in the night, because of the demands of the hospitality industry. At that moment, I understood. Despite his knowledge, zeal, and determination, he just couldn’t meet the lifestyle demands towards healthier living. That insight sparked a frank conversation about additional support from his family that he might have needed and a cascade of adjustments towards his peculiar situation. Traditionally, health workers may be primed and incentivised to include their clients in everyday practice, but this may still be at the discretion of practitioners.
Comparatively, a conscious effort to make research inclusive could be transformative in its results. Most social science research aims to influence policy and or practice by addressing the lives and experiences of people, including sub-populations, in society. It is not without merit to note the growing drive to involve the public or patients in research. From conceptualizing a problem, to validating research findings, to sharing insights for uptake by interested parties, involving the ‘parties’ concerned might help researchers identify and mitigate relevant problems that have the potential to make lives better. This ensures efforts are likely not occurring in a so-called academic bubble.
Public Patient Involvement (PPI) in research is highly relevant in modern public health as people may occupy several intersecting identities, and widening participation opportunities can allow multiple perspectives to come through. For instance, a study on an intervention to improve the quality of life of adults living with a chronic illness may affect different kinds of people. People could vary based on age, biological sex, gender, relationship status, ethnicity, educational level, caring responsibilities, dependents, and their experience of living with a disability, amongst others. For these reasons, deliberately engaging the public or patients, not just by ensuring representative data collection, but also across the research cycle, can present an opportunity for rich dialogue and feedback. The resulting information could help researchers prioritise and make sense of the problems they seek to solve, with the added real lenses and lived experience of the affected.
Likewise in my doctoral research, PPI is a critical component to ensure that findings are reflective of, and useful within, the Irish context. One way this has been done, was to identify gaps in the literature, develop summary abstracts on different problems and get feedback from people with multiple sclerosis (MS) as well as from community workers addressing the care needs of the patients. Their insight was invaluable. Not only were they responsive and gracious in their feedback, but they also shared organizational priorities and personal experiences that helped put into perspective a research question that intersected with actual needs. This was a significant learning moment for me and a direct influence of my supervisors, Drs Rebecca Maguire, and Laura Coffey.
PPI can also take other forms and involve a wide range of people. In addition to people living with an illness, health workers, family members, informal carers, advocacy organizations and indeed anyone with a stake or interest in research findings, directly or otherwise, can be involved. The PPI Ignite Network provides a rich set of online resources for researchers to get started with, and guide them through, PPI in research. Amongst others, these can be useful resources in seeking to understand the utility and challenges of PPI in research. Beyond planning, their contribution can equally be instrumental in highlighting potential ethical challenges, gaining a gateway to the people affected and validating shared insights towards research uptake. Given these potentials, the specific entry point for PPI in any piece of research may require some initial thought and planning, but there are relevant resources to offer guidance.
Nonetheless, PPI adds another responsibility for researchers with the complexities of research, or indeed work, involving human participants. Sometimes I reflect on people I was opportune to meet in my professional career. People no different from Mr X, desiring a positive living experience, yet who were unable to do so. With the present-day plethora of interventions, and ever-changing guidelines for practice, I often wonder to what extent needs have been considered.
Taking the case of a digital health intervention aimed at improving psychological wellbeing among women, to what extent could input be practically gotten from women in remote locations, travellers, or even irregular migrants and would researchers and or practitioners be willing to take up the challenge of ensuring their inclusion? Ethical concerns, logistical issues as well as diverging expectations may be encountered where PPI is considered.
But the rewards may well be worth it. A major goal of research in my opinion is to advance any societal benefits. And, I believe I represent the majority in this opinion. When research efforts are ‘with us’, with the affected telling their side, buying in or out, and highlighting what would work, there is potential for greater benefit. I hope that, through my research, practitioners and some people with MS themselves, find benefits as they consider the insights I share, beyond the advancement of knowledge. For someone, perhaps, like Mr X. And, for someone like me, a first-year female student, hopeful my work is meaningful. I acknowledge the support I would need, and what is available within the university and ADVANCE CRT, while hoping that someone somewhere would not assume what exists works for me, but instead asks for and uses my research feedback along their way.