Hospice care has a long history in Ireland, going back to Cork and Dublin in the late 19 th century

1. Developing an all-Ireland Institute for Hospice and Palliative Care: recapping the vision and progress to dateDavid Clark, PhDVisiting Professor of Hospice StudiesTrinity College Dublin/University College DublinandProfessor of Medical SociologyLancaster University

2. The state of development of hospice and palliative care • Hospice care has a long history in Ireland, going back to Cork and Dublin in the • late 19th century • Since 1987/95, specialty recognition for palliative medicine has been a growth • point for hospice and palliative care development • Growing interest in framing end of life care as a public health issue • Around the world ‘the field’ of palliative care remains patchily developed, with • huge discrepancies in resources and provision across regions and countries • Some problems around terminology, service definitions and characterising • the patient population • But global interest in palliative care development has never been greater

3. World map of palliative care development Wright et al Journal of Pain and Symptom Management, 2008

4. Marino et al 2008

5. Palliative medicine Countries with palliative medicine as a specialty/ subspecialty N=18

6. Hospice and palliative care on the island of Ireland • STRENGTHS • Policy recognition directed at palliative care improvement • Some palliative care groups linked to universities and HEIs for education and research • Small number of research projects and programmes and students registered for higher degrees by research • Rich array of professional, governmental and voluntary sector groups supporting the endeavour • WEAKNESSES • No clear academic leadership in the field • Educational and research endeavours are highly localised, without co-ordination • Problems of unnecessary competition within a field that lacks capacity • Little international engagement • CHALLENGE • How best to develop and sustain a health and social care system for the provision of palliative and end of life care?

7. Figure 2.1 Overview of Stakeholders

8. First steps in the process (May 2006 – June 2007 Step 1 Concept Generation May-Aug 2006 Step 2 Concept Testing Sept 06-Feb 07 Step 3 Explore Options March 2007 Step 4 Present Outline Proposal June 2007 Draft discussion paper developed with concept for an Institute for Hospice and Palliative Care outlined Engage Prospectus consulting Paper circulated widely for consideration. Discussions with organisations and associated individuals, north and south Interviews with key stakeholders Workshop to examine the potential aim, objectives and principles of the Institute Updated concept circulated to all stakeholders Workshop presentation of an outline proposal with the concept for an all-Ireland Institute of Hospice and Palliative Care further developed

9. Next steps in the process Step 5 Formation of steering group August 2007 Step 6 Produce draft business case Sept 07-Feb 08 Step 7 Funding applications Mar-08- Mar 09 Step 8 Bidding process Spring 09 Co-chaired by Profs Muiris Fitzgerald and Judith Hill Multi-disciplinary and intersectoral Cross jurisdictional Detailed five year plan, with costings Discussions with key funders Regular feedback and final consultation Key application to Atlantic Philanthropies Partnership funding from state, charitable and foundation sources Creation of consortium of funders To be co-ordinated by HRB/R&D office Will seek applications from bidding teams

10. Vision for the Institute To improve the experience and understanding of palliative and end-of-life care on the island of Ireland, by enhancing the capacity to: develop knowledge, promote learning, influence policy and shape practice

11. Objectives of the Institute • Become a leading international centre of expertise and information on education, research, policy and practice in palliative and end-of-life care • Advance the development of a sustainable and skilled workforce by providing a platform for collaborative educational and training programmes in palliative and end-of-life care • Strengthen the evidence base by promoting, and increasing the capacity for, collaborative research and development in palliative and end-of-life care • Act as a responsive and accessible resource to service providers and policymakers, seeking to shape practice and influence policy

12. Principles of the Institute • All-Ireland basis • International partnerships contributing global improvement • Engagement with service providers, educators and researchers • Strategic leadership for education and research in palliative and end-of-life care • Adding value to existing activities • Enabling further capability in palliative and end-of-life care services, education and research • Collaborative, inclusive approach • Promote inter-disciplinary and inter-professional collaboration • Values reflect those of palliative and end-of-life care • Promote the involvement of service users, carers and advocacy groups

13. Education and Training • Identify the evolving education and training needs • Drive the strategic development of palliative care education • Promote studies and collate existing evidence on effectiveness of offerings • Develop and maintain a database of education and training programmes • Promote & facilitate the involvement of service users in education & training • Host regular meetings/symposia to promote innovation in education and training • Support existing education providers to ensure highest standards of delivery • Work with educational partners to develop standardised core curricula • Contribute to international discussions on curricula development • Assess need for wider public education initiatives on end of life care

14. Research • Develop strategic plan for research in palliative and end-of-life care • Secure an increasing level of funding • Identify gaps and promote new research programmes • Commission some programmes of research in palliative and end-of-life care • Develop and maintain a database of • Improve quality and outcomes in research • Support population-based and multi-centre research projects • Enable Irish participation in international research projects/funding streams • Enhance research capacity through mentoring, training, career development • Support academic institutions and service providers in making applications

15. Resource to service providers and policymakers • Contribute to evidenced based policy and practice debates • Leverage new funding for education and research in palliative • Inform the debate on workforce planning by compiling relevant evidence • Organise networking events to exchange information and best practice • Deliver targeted communications/fact sheets to key stakeholders • Develop and maintain a website covering all of the Institute’s activities • Compile and disseminate information in relation to best practice • Facilitate inter-sectoral and inter-disciplinary collaboration • Organise international exchanges to view models of excellence/share ideas

16. Proposed governance and staffing • The Institute will be a “centre” within a host organisation (university, hospice, other organisation) • The Institute will have a limited lifespan, for the purpose of building capacity – with appropriate evaluation and review • Funding to establish and support the Institute will be awarded to a host organisation on the basis of a competitive bidding process • An Oversight Committee will be established by the Institute of Public Health to provide ongoing advice, monitor progress and to oversee evaluation • A Consortium of Funders will meet annually, receive reports and review progress

17. Outcomes of the Institute 1.Institute established and functioning effectively 2. Measureable increase in research capacity, collaboration, activity 3. Evidence of improved co-ordination, accessibility and uptake of education programmes 4. Evidence of beneficial impact on the delivery of palliative and end- of-life care services 5. Evidence of increased participation of service users, carers and advocacy groups in the design and evaluation of palliative care services, research and education/training programmes 6. Evidence of increased public awareness of palliative and end of life care issues

18. ‘Legacy’ of the Institute • The public profile of hospice and palliative care will be enhanced with • recognition of the field as a key part of the public health system. • Strong leadership in hospice and palliative care research, education and • service provision across the island of Ireland • Service provision, research and education will be evidence-based to meet • evolving needs • Stronger collaboration between service providers, educators and • researchers • The island of Ireland will be positioned as an international leader in • research, education and service provision within the field of hospice and • palliative care • The Institute will have inspired similar approaches and models elsewhere • Enhanced experience for patients and families requiring end of life care • across the island of Ireland

19. Key features • All-Ireland • Public-private • Multi-disciplinary • Inter-sectoral • Multi-focal: research-education-policy/practice