Study - Patient expectations on healthcare delivery cannot be assumed

A new study involving Epilepsy Ireland service users and members which looked at the attitudes of people with epilepsy in Ireland to integrated person centred care (IPCC) has been published in the latest edition of the medical journal, Epilepsy & Behaviour.

As a result of the focus that the National Clinical Programme for Epilepsy (NCPE) places on IPCC, the study was undertaken to establish what people with epilepsy actually thought about IPCC and how the NCPE’s model of IPCC aligns with patients expectations, preferences and values.

The purpose of IPCC, according to the HSE, is to join up our health and social care services in order to improve quality of care whilst putting patient outcomes and experiences at the centre of all of this. The goal behind this is that people with complex needs can live healthier and more independent lives. 

The study describes IPCC as a shift from a disease-centred approach of healthcare to one that focuses on a person’s entire needs in terms of employment, lifestyle etc. Under IPCC, a person’s care is seen as a partnership between the medical team and the patient.

The study was a collaboration between clinicians, universities, Epilepsy Ireland and people with epilepsy. Institutions involved included RCSI; NUI Maynooth; St.  James’ Hospital; DCU; and Trinity College.

Participants in the study consisted of Epilepsy Ireland service users and members. In total, 27 people with epilepsy were involved - 17 female, 10 male, ranging in age from 18 to 55. All involved in the study were at various stages of their lives with epilepsy, with some being diagnosed for only a year while one participant had lived with epilepsy for 42 years.

The findings of the study suggest that whilst appreciating aspects of the basis of IPCC, “patient readiness to participate in and adopt a new integrated PCC paradigm cannot be assumed. They show that when [people with epilepsy] enter the healthcare arena they can… act in ways that are sometimes more aligned with a traditional model of healthcare delivery than with healthcare modernization goals”.

The study found that “there is still an overwhelming, perhaps unconscious cultural conditioning, driven by the health system and [healthcare professionals] to treat the diagnosed condition rather than the person”.

Notably, participants also expressed concerns about navigating a new model of care (IPCC) when they already have difficulty in navigating the current system. Another finding pointed to a need for the medical community to be more understanding of a person’s overall needs and requirements within the current model of care.

The full study and its findings in detail can be found here.

This is an important study that highlights the need for real patient engagement when designing healthcare models and services. It also highlights that assumptions about what patients expect, value and desire within health services cannot be assumed by healthcare providers.

We would like to thank the research team for their work on this study, and in particular, we want to thank the members & service users of Epilepsy Ireland for taking the time to participate.

Source: Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland. Power et al. Epilepsy & Behavior, Volume 102, 106668