Patient Involvement in Research Is Key


For Research Appreciation Day, Dr Chukwuemeka Nwuba, a speciality doctor in eating disorders, explains why patient participation is integral in research. 

Working collaboratively in the healthcare space is absolutely essential; there is no single service, hospital, or clinician that can operate independently of wider systems and organisations. And by far the most important people that should be at the centre of such collaboration—and of pretty much every decision both strategic and operational—are patients. Those with the lived experience. That is, if systemic issues are to be addressed, if avoidable errors and waste are to be prevented, and treatment for patients is to be optimised. It seems banal to suggest such, but having lived and breathed healthcare settings for well over a decade, the mind still boggles at the sheer extent of the lack of patient-service collaboration.

I guess this is part of the reason why I feel so privileged to be involved with my current work at Club Majority. Club Majority is a community-driven organisation working towards increased awareness and improved treatment of eating disorders and disordered eating in those traditionally under-catered for (e.g. people of colour, religious groups, men, older people, those in the LGBTQIA+ community, etc.). In its work, it partners with grassroots organisations, policy makers, global brands, and some of the world’s leading voices on eating disorders. But, most importantly, its research is powered by a global community of experts by lived experience.

Patient-service collaboration (or lived experience-service collaboration) is often deployed for the development of patient-specific management plans, the direct involvement of patients in quality improvement projects and policy formation, and the collation of feedback both positive and negative. For example, in 2021, the World Health Organization recommended that children and adolescents be directly involved in the creation of policies that affect young people.

However, patient-service collaboration should also include wider issues—often viewed as trivial—such as food, furniture, and floor plans, amongst others. In healthcare delivery, those supposedly mundane aspects of one’s care can be transformative. Take food: the choice of food available may be instrumental in an eating disorders patient engaging in their treatment and consequently moving out of malnutrition. Or, furniture: good environmental ergonomics may cater to the needs of a patient with generalised anxiety disorder who may require low stimulus respite in an appropriately designed room. Or, floor plans: the building layout may aid, or frustrate, an inpatient with depression detained under the Mental Health Act who has limited leave. There are innumerable examples.

In all of these above real-life cases, diagnosing and treating the root causes of the problems with the involvement of those with lived experience made all the difference. Because, more often than not, their opinion will affect the efficacy of the intervention or the integrity of the research.

The old Latin phrase ‘Nihil de nobis, sine nobis’ which is translated as ‘Nothing about us without us’ is a principle which, in the context of healthcare delivery, indicates that no action should be decided by any healthcare worker without the full and direct participation of the patients affected by that action. And it still rings as pertinent today as ever.

Involving patients at every step, in a collaborative manner, can be challenging for various reasons and so it is understandable—although not excusable—that it may not happen with as much regularity as it ought. Firstly, sourcing a variety of patients—when it would be prudent to do so—can be logistically taxing. Secondly, taking into consideration multiple ‘additional’ points-of-view can be strategically complex and feel operationally impractical—especially when these opinions may appear to be in conflict. Lastly—and probably the most tricky—is that it can be incredibly time-consuming; time being arguably our most valuable commodity and one which is often in short supply in the context of the UK’s healthcare system.

All of these can place a great deal of strain on resources—personnel, expertise, and time. There are also ethical implementations to consider, as to who should and should not be included (Lignou et al. 2024).

This being said, involving patients in every decision—no matter how small—is crucial in fostering a collaborative and respectful healthcare environment. It empowers patients, promotes trust, and enhances their engagement in their own care, leading to better health outcomes and satisfaction. By valuing their input in all aspects of their treatment, we acknowledge their unique perspectives and needs, ultimately ensuring that care is tailored to each individual. This approach not only improves the patient experience but also builds a stronger, more research-driven and compassionate healthcare system.

References

Lignou, S., Sheehan, M., & Singh, I. (2024). ‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research. Research Ethics, 20(2), 288-303. https://doi.org/10.1177/17470161231224060



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