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


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

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
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
  • 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

World map of palliative care development
Wright et al Journal of Pain and Symptom
Management, 2008
Marino et al 2008
Palliative medicine
Countries with palliative medicine as a
specialty/ subspecialty N18
Hospice and palliative care on the island of
  • Policy recognition directed at palliative care
  • 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
  • Rich array of professional, governmental and
    voluntary sector groups supporting the endeavour
  • 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
  • How best to develop and sustain a health and
    social care system for the provision of
    palliative and end of life care?

Figure 2.1 Overview of Stakeholders
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
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
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
Co-chaired by Profs Muiris Fitzgerald and Judith
Hill Multi-disciplinary and intersectoral Cross
Detailed five year plan, with costings Discussion
s with key funders Regular feedback and final
Key application to Atlantic Philanthropies Partne
rship funding from state, charitable and
foundation sources Creation of consortium of
To be co-ordinated by HRB/RD office Will seek
applications from bidding teams
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
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
  • 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

Principles of the Institute
  • All-Ireland basis
  • International partnerships contributing global
  • 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

Education and Training
  • Identify the evolving education and training
  • 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

  • Develop strategic plan for research in
    palliative and end-of-life care
  • Secure an increasing level of funding
  • Identify gaps and promote new research
  • 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

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
  • Organise international exchanges to view models
    of excellence/share ideas

Proposed governance and staffing
  • The Institute will be a centre within a host
    organisation (university, hospice, other
  • 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
  • A Consortium of Funders will meet annually,
    receive reports and review progress

Outcomes of the Institute
  • 1. Institute established and functioning
  • 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

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
  • 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  

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