Building research collaboration


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Building research collaboration

  1. 1. Dr Mhoira Leng Prof Scott Murray Dr Liz Grant Dr Scott Long Dr Elizabeth Namukwaya Dr Julia Downing Dr Joanna Dunn Building Research Collaboration ‘ Living and dying well’
  2. 2. Palliative Care Unit <ul><li>Vision </li></ul><ul><ul><li>advocacy </li></ul></ul><ul><ul><li>clinical support </li></ul></ul><ul><ul><li>education and training </li></ul></ul><ul><ul><li>research </li></ul></ul><ul><ul><li>centre of excellence </li></ul></ul>
  3. 3. Programme Aim <ul><li>To support the development, delivery and evaluation of a new integrated model of “generalist” palliative care for sub-Saharan Africa which provides an integrated framework for a continuum of care between a national referral hospital setting hospital and the broad national and international (eg Sudan) community it serves. </li></ul>
  4. 4. <ul><li>3 strands; one overall vision </li></ul><ul><li>To support, develop, deliver and evaluate palliative care in a hospital setting and ensure its integration into the community </li></ul><ul><li>Relevance: </li></ul><ul><li>For Uganda </li></ul><ul><li>For Sub Saharan Africa </li></ul><ul><li>For South-North sharing </li></ul>Collaboration portfolio
  5. 5. Patient needs and perspectives <ul><li>Listening and hearing </li></ul><ul><li>describing different illness trajectories </li></ul><ul><li>cultural expectations / attitudes towards end of life </li></ul><ul><li>social, psychological and spiritual needs . </li></ul><ul><li>decision making and the choice of place of care and death </li></ul><ul><li>Relevance </li></ul><ul><li>underpin a palliative care approach </li></ul><ul><li>profile the nature of end stage chronic disease </li></ul><ul><li>understanding context and cultural and traditional perspectives </li></ul>
  6. 6. Staff needs and perspectives <ul><li>What are the knowledge, skills and confidence gaps in delivering palliative care? </li></ul><ul><li>What are the challenges and strengths? </li></ul><ul><ul><li>systems / cultural / traditional / beliefs </li></ul></ul><ul><li>Relevance </li></ul><ul><li>establish educational need </li></ul><ul><li>deliver and evaluate a multi-disciplinary, multi dimensional training programme </li></ul><ul><li>identify and address system and resource challenges and build on strengths </li></ul><ul><li>evaluate clinical interventions </li></ul><ul><li>mutual learning across the collaboration </li></ul>
  7. 7. Frameworks for a continuum of care: a pathways response <ul><li>How are patients with palliative care needs identified ? </li></ul><ul><li>How is palliative care provided? </li></ul><ul><li>What are the barriers and blocks to delivering quality and continuity of care? </li></ul><ul><li>What, and who influences the decision making process? </li></ul><ul><li>Relevance </li></ul><ul><li>Develop an holistic and continuous model of care for life limiting illness </li></ul>
  8. 8. Summary Research is a priority – (90/10 divide) <ul><li>Facilitates Advocacy at national level </li></ul><ul><li>Encourages Donor interest </li></ul><ul><li>Creates momentum </li></ul><ul><li>Gives direction and encourages national ownership </li></ul><ul><li>Increases staff motivation and local engagement </li></ul><ul><li>Builds staff capacity - transferable skills </li></ul>
  9. 9. What can we do <ul><li>Work with colleagues to identify local capacity, identify partners, create structured collaboration, ( THET manual) </li></ul><ul><li>Provide succinct summaries of global initiatives / new research/ - help to translate knowledge into practice, echoing questions that are being asked </li></ul><ul><li>Provide research training events </li></ul><ul><li>Information about grants – connecting to global programmes </li></ul><ul><li>Turn research into papers, turn research into practice, turn practice into policy, turn policy into research </li></ul><ul><li>BUT more importantly - research is about making a difference to peoples’ lives </li></ul>
  10. 10. Summary <ul><li>Don’t guess needs </li></ul><ul><li>Don’t replicate existing programmes </li></ul><ul><li>Coordinate with others </li></ul><ul><li>Enjoy the privilege and the responsibility of being a guest in a host country, and a global partner with colleagues </li></ul><ul><li>Don’t do nothing </li></ul>
  11. 11. Future plans <ul><li>Building excellence: strengthening systems </li></ul><ul><li>Learning exchange </li></ul><ul><li>A collaborative MSc Palliative Care ((Distance Learning) between Hospice Uganda, Makerere, Edinburgh and Yale Universities </li></ul><ul><li>Shared teaching modules </li></ul><ul><li>Mentorship programme </li></ul>