Developing an allIreland Institute for Hospice and Palliative Care: recapping the vision and progres

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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
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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

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World map of palliative care development
Wright et al Journal of Pain and Symptom
Management, 2008
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Marino et al 2008
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Palliative medicine
Countries with palliative medicine as a
specialty/ subspecialty N18
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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?

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Figure 2.1 Overview of Stakeholders
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First steps in the process (May 2006 June 2007
Step 1 Concept Generation May-Aug 2006
Step 4 Present Outline Proposal June 2007
Step 3 Explore Options March 2007
Step 2 Concept Testing Sept 06-Feb 07
Draft discussion paper developed with concept for
an Institute for Hospice and Palliative Care
outlined Engage Prospectus consulting
Paper circulated widely for consideration. Discus
sions 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
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Next steps in the process
Step 5 Formation of steering group August 2007
Step 8 Bidding process Spring 09
Step 7 Funding applications Mar-08- Mar 09
Step 6 Produce draft business case Sept 07-Feb
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Co-chaired by Profs Muiris Fitzgerald and Judith
Hill Multi-disciplinary and intersectoral Cross
jurisdictional
Detailed five year plan, with costings Discussion
s with key funders Regular feedback and final
consultation
Key application to Atlantic Philanthropies Partne
rship funding from state, charitable and
foundation sources Creation of consortium of
funders
To be co-ordinated by HRB/RD office Will seek
applications from bidding teams
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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
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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

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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

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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

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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

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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 Institutes 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

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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

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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

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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  

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Key features

• All-Ireland
• Public-private
• Multi-disciplinary
• Inter-sectoral
• Multi-focal research-education-policy/practice