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The Patient Narrative Project – Phase One

In 2012 the Irish Department of Health set the agenda in Ireland for the creation of ‘a new integrated model of care that treats patients at the lowest level of complexity that is safe, timely, efficient, and as close to home as possible’. To enable the delivery of integrated models of care five Integrated Care Programmes are being established within the HSE under the office of the Clinical Strategy and Programmes Division (CSPD)

Although ‘integrated care’ has many definitions, it is commonly agreed that its realisation has to result in better outcomes and experience of health services for the individuals who use them, whereby services are well co-ordinated around the needs of the person using the service. In addition, discussions on the development and delivery of services must hold the voice of the user at its core and seek ‘to impose the patient perspective as the organising principle of service delivery’.

The ‘Patient Narrative Project’ was initiated in late 2016 to, for the first time in the Republic of Ireland, deliver the patient / service user perspective on what should be expected from person-centred coordinated care and to guide the development of current and future services and strategy through the office of the CSPD.

IPPOSI, due to our experience and expertise in harnessing a coherent and critical voice of patients / service users, has led the first of three phases of the project.

Phase one of the project (Nov 2016 – April 2017) is where service users and their organisations will co-produce:

  • a set of generic descriptors for what person-centred co-ordinated care looks and feels like from the Irish service user perspective and
  • a definition for ‘person-centred co-ordinated care’ that is shared, understood and used by service users and staff at all levels of the health service in Ireland

IPPOSI will lead an evidence-based, narrative enquiry methodology to hear and collate experiences of service users and patients in Ireland who need care over time from multiple services, as well as their carers and families and the health staff relating to their experiences. The experiences will be translated into descriptors and a definition of person-centred co-ordinated care that will be written not just for the experts, but for patients, people, families and carers.

The goal is that the descriptors and definition of what good integrated care and support looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.

Phase two of the project (Jan 2017 – Sept 2017) will use the generic descriptors to develop a standard process of engagement with service users that will allow a higher volume of their narratives and experiences to be heard and used to benchmark, guide and develop health services.

Four regional workshops around Ireland are being organised to hear and capture patient / carer/ service user perspectives, in particular the perspective of people needing care over time from multiple services. Patients, carers, service users, patient representative organisations are all invited to attend.

To compliment the work of the focus groups, we are conducting an online survey to gather the views and experiences of the wider IPPOSI patient membership.  The survey questions are based on the approach being used within the focus groups.

GO HERE FOR THE SURVEY (Survey now closed)

Why is this research being done? It is important that people experience quality healthcare that is organised around the individual’s needs and preferences. The Health Service Executive want to develop a way of evaluating health care based on the experiences and expectations of people who use the service.

This study aims to explore your experiences of care, particularly if you require care overtime from multiple services. The research team will identify key themes from the experiences of everyone who takes part and develop a set of descriptors of what ‘person-centred coordinated care’ looks and feels like.

Who is conducting the research? A team of researchers, from the School of Nursing, Midwifery & Health Systems in University College Dublin, is conducting the research in collaboration with the Health Service Executive and IPPOSI. The research is being funded by the Health Service Executive.

Click on the link below for an overview of the project, for sharing with your community.

Patient-Information-for-Patient-Narrative-Project-Phase-1.pptx

  • Clare Duffy, Family Carers Ireland
  • Claire Kinneavy, Patient Advocate, Arthritis Ireland
  • Anne Lawlor, 22q11 Ireland
  • Dr. Derick Mitchell, IPPOSI
  • Prof. Anne McFarlane, Graduate Entry Medical School, University of Limerick
  • Dr. Tomas Carroll, Alpha One Foundation
  • Dr. Catherine Darker, Department of Public Health & Primary Care, Trinity College Dublin
  • Ava Battles, Multiple Sclerosis Ireland
  • John Church, Arthritis Ireland
  • Dr. Jason Last, School of Medicine & Medical Science, University College Dublin
  • Prof. Gaye Stephens, Centre for Health Informatics, Trinity College Dublin

Observer: Clare Hudson, Health Service Executive