Makerere-Edinburgh-Yale Palliative Care Collaboration
Working with Yale University and Makerere University to improve patient care.
The Global Health Academy is part of an innovative partnership between Africa, the United Kingdom and the United States. This partnership is working to further build up palliative care at Makerere University and its associated hospital, Mulago Hospital.
Context
- Globally more than 100 million people and their families worldwide need palliative care and support each year. But only seven per cent actually receive such care.
- Alongside the heavy burden of HIV and other infectious diseases, non communicable diseases such as cancers, heart failures, COPD account for 60% of the world’s deaths.
- The burden of these diseases is rising steadily in low income and transitional economies.
Africa's disease burden
- Africa, home to 15% of the world’s population, carries the greatest burden of disease.
- Projections suggest that Africa will see the largest increase in death rates from cardiovascular disease, cancer, respiratory disease and diabetes over the next ten years.
- Over 22.5 million people are living with HIV, with approximately 1.6 million deaths per year.
- Over 80% of all patients with cancer in Africa have advanced stage disease at initial presentation.
- At least half a million people die of cancer each year with rates expected to grow by 40% over the next 50 years.
- While at least 55% of all cancers in Africa have an indication for radiotherapy, facilities are available in only 23 of Africa’s 53 countries, reaching less than five percent of the total African population.
- Africa has less than two percent of all radiotherapy cancer centres globally.
Palliative care in Uganda
Uganda has led the way for palliative care in the African Continent. Through work initiated by Hospice Uganda, and the African Palliative Care Association, Ugandan Government policy has endorsed palliative care, and facilitated morphine availability.
Makerere University
Makerere University have established a Palliative Care Unit based at Mulago Hospital.
The vision of this Palliative Care Unit is to:
- advocate for a palliative care approach across all specialities in the hospital
- provide excellent clinical care
- develop contextualised educational resources
- deliver training across all hospital cadres
- invest in a comprehensive research portfolio
Makerere University, in association with Hospice Uganda, also offers a BSc in Palliative Care.
Goals and Relevance
The overall vision of the Makerere Edinburgh Yale Palliative Care Collaboration is to support, develop, deliver and evaluate palliative care in a hospital setting and ensure its integration into the community.
The Collaboration has relevance across several geographic areas.
- Uganda: Providing the clinical evidence base to shape a new approach to integrated palliative care.
- Sub Saharan Africa: Providing a unique model. As one of the few hospital based Palliative Care Units in Africa, the Unit has the potential to function as a centre of excellence in bridge building across hospital services, and between hospital and community.
- South-North sharing: Providing novel learning on palliative public health approaches.
Patients, staff and framework of care
The Makerere Edinburgh Yale Palliative Care Collaboration also has clearly defined objectives across three areas:
1. Patient Needs
Research focus
This partnership will conduct research that focuses on:
- describing different illness trajectories
- cultural expectations and attitudes towards end of life
- social, psychological and spiritual needs
- decision making and the choice of place of care and death
Results
The output of the collaboration for this strand will be the following:
- the results will underpin a new palliative care approach in the hospital
- for the first time there will be a profile the nature of end stage chronic disease which will contribute to better chronic care management
- the results will establish context of dying and cultural and traditional perspectives
Unique contribution
- Our Primary Palliative Care Unit at Edinburgh has led the palliative disease trajectory studies in the UK. This will be first opportunity to use the methodology in an African setting and collect and collate comparable data.
- The evidence generated should shape policy planning especially for chronic and non-chronic diseases (NCDs) but also for infectious diseases.
- The expertise of Edinburgh and Yale Universities combined with the expertise already present will be used to address these burdens and build research capacity strengths at local level.
2. Staff Needs
Research focus
The partnership will conduct research that focuses on these areas:
- What are staff knowledge, skills and confidence gaps in delivering palliative care?
- What are the challenges and strengths of the present health hospital system?
- What are the challenges and strengths of the culture, traditions and beliefs that create and sustain resilience despite the difficulties?
Relevance and purpose
- This research will establish educational need. This in turn will be used to shape, deliver and evaluate a multi-disciplinary, multi dimensional training programme.
- This research data will also allow an evaluation of clinical interventions and will feed into programme development. We will identify and address system and resource challenges and build on strengths.
Unique contribution
- The outputs of this strand are specifically focussed on building capacity among clinical and management staff through education.
- The need for master classes in mentorship and multi-disciplinary team work in palliative care approach will be identified.
- We will also build on the new BSc in palliative care already being delivered between Makerere, Hospice and APCA. The goal is to support career pathways while emphasising the need for palliative care to be embedded into a Family Medicine Approach.
- Future plans together are for a new MSc in Family Medicine/Palliative Care. Edinburgh will share their highly esteemed MSc in Clinical Education. Research skills will be focussed on identifying educational needs.
3. Framework of Care
This strand is concerned with establishing a new managed clinical network framework for care.
Research focus
This partnership will conduct research that focuses on:
- How are patients with palliative care needs identified?
- How does the system provide palliative care?
- What are the barriers and blocks to delivering quality and continuity of care?
- What, and who influences the decision making process?
Results
- Evidence generated from this research will support the development of a holistic and continuous model of care for life limiting illness across and between hospital and community.
- This model will be replicable in other African settings and we will aim to export it to other medical schools.
Unique contribution
- This model should establish Makerere Palliative care as a Centre of Excellence. It should be replicable in other African settings. Working as a community we will share the resources developed with other African Medical schools through the newly formed network, the African Association of Medical Schools.