In Ireland, like many other countries, people want a healthcare service that treats them as individual people, meets their needs and is flexible enough to enable timely access and responsive care in the right place.

Healthcare services are delivered in many different settings (home, hospital, long term care facilities, General Practitioner services) from many different professionals. In addition, enabling people to optimize health and well-being means that people experience an integrated service which provides joined up care. This focus is called Person centred co-ordinated care.

What we know from experience is that services can be fragmented and disjointed. The person has to fit into the service, rather than a service being built up around what that individual needs and taking into account their individual circumstances.

In 2016, the Health Service Executive funded a project, led by IPPOSI to examine what people in Ireland wanted from healthcare services. Researchers from the School of Nursing, Midwifery & Health Systems in University College Dublin undertook a study to identify patient narratives of care expectations. This project was undertaken using a co-design approach, which means that the stakeholders were actively involved in designing the study and producing the findings so that it would be meaningful for people experiencing healthcare.

Phase One (Nov 2016 – May 2017)

In early 2017, 11 focus groups with 78 people who used services, people who supported service users and patient/carer representative groups took place in four locations around Ireland. An on-line survey was also distributed where we had 39 responses.

Following this, we examined what people told us about their experiences of care and identified what they expected in responsive healthcare service delivery. These are the 19 statements which define what people want and need from healthcare services delivered in Ireland.

In Phase Two of the project, the Health Service Executive, in partnership with service users, will use the statements to inform the design and delivery of services that are both person centred and co-ordinated.

A summary of Phase One is available below:

The 19 statements and single definition can viewed on this page or can be downloaded (PDF – 1.2Mb) by clicking here: Patient Narrative Project Slidedeck 06092017

The full report from the UCD team who conducted the focus groups and online survey is available for download by clicking here: Patient Narrative Project – Phase 1 report – FINAL.

This report should be referenced as: Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient Narrative Project for Person-Centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin.

‘Your Voice Matters; stories to build a better health service’ is phase two of the patient narrative project which will use the 19 generic statements 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.

‘Your Voice Matters; stories to build a better health service’ will allow patients to tell the HSE how they are doing in the journey towards person-centred coordinated care – a framework that asks, “Are we there yet?”.

The framework allows a high volume of patient experience to be collected and analysed on an ongoing basis.  Use of SenseMaker® software enables ‘Your Voice Matters; stories to build a better health service’ to provide both qualitative data in the form of information rich stories in the words of patients and quantitative data in the form of the numbers of individuals who have experienced aspects of good care (as defined in phase 1 of the project) i.e., statistical data backed up by explanatory narrative.

Questions in the form of novel sense-making triads support each participant to add layers of meaning to their experience, providing a new lens by which health service staff can view the services provided.

Preliminary data from the ‘proof of concept’ period for ‘Your Voice Matters; stories to build a better health service’, which runs during September and October 2017, will be available as we look at “Are we there yet?”

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 four 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’.

This ‘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.

  • 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
  • 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