Academics at Maynooth University and the Royal College of Surgeons Ireland (RCSI) have been awarded €280,000 in funding to collaborate on research that will improve our understanding of how care is delivered to those affected by complex chronic diseases, such as epilepsy.
Epilepsy Partnership in Care (E-PIC) seeks to provide data on both the users and providers of health services in Ireland that will enable the health care system to realise the promise of patient-centred care. The academics will work closely with Dr Colin Doherty, HSE National Lead for Epilepsy, to ensure the research is fully rooted in the ambition to continuously improve quality and safety of patient care.
The management of complex chronic diseases places tremendous pressure on health services across the globe. E-PIC investigates epilepsy as an example of a chronic condition that imposes quite variable burdens on the health system, which suggests that a finer-grained understanding of the experience of patients and providers is needed.
The research will scrutinise the divisions that exist between the provision of services and the experience of those living with chronic conditions. While current health service providers regularly look to such instruments as patient satisfaction surveys for information on the functioning of the service, the ethnographic approach adopted by E-PIC will contextualise this data by pointing to factors that are not currently recorded by medical professionals.
Researchers will conduct interviews and focus groups with patients to ascertain various understandings of both health and health services. Service providers also will contribute to the study, through Action Research methods, with an eye to improving service fucntions on the foot of this data, as the HSE continues to implement its patient-centred care policies.
Dr A. Jamie Saris, Senior Lecturer in Anthropology at Maynooth University and one of the lead researchers at E-PIC, explains: “At the heart of this research is the understanding that people have strong expertise in their own lives, expertise that clearly impacts their condition. This work represents one of the first attempts in health services research in Ireland to collate this information, so that policy-makers and implementers can begin to utilise it for the benefit of everybody. Indeed health care strategies that make use of this data can potentially ease the pressure on an over-burdened system by identifying inefficiencies that can be improved by adopting a patient-centred mentality.”
Mary Fitzsimmons, the principal investigator from RCSI, adds, “This research will examine why the concept of patient-centred care, which appears so obvious, is sometimes not the norm. It will also upskill healthcare providers in action research and learning that can have an immediate impact on improving the quality and safety of patient care. The learning from this project can be re-used in other similarly complex chronic disease domains.”
Welcoming this new direction in health services research in Ireland, HSE Chief Information Officer Richard Corbridge observed: “Modern healthcare systems often forget to keep the patient at the heart of what they do. This research means so much to Ireland as it will allow the whole system to understand lessons of how to gain the most appropriate level of engagement that allows the healthcare system to become fluid around the patient rather than rigid and obstructive to someone needing care.”
The Research Collaborative for Quality and Patient Safety award (RCQPS) is an alliance of the Heath Research Board (HRB), The Royal College of Physicians in Ireland, and the HSE. It aims to bring together high-quality researchers from a variety of disciplines to address pressing real-world issues in the Irish health system at regional and national scales. The funding allocated for this project will support two FTE Postdoctoral Fellows based at Maynooth University and RCSI over two years.