Reducing the Burden of Serious Health-related Suffering: An evidence base to close national divides in access to palliative care and pain relief

Lead Research Organisation: University of Edinburgh
Department Name: College of Medicine & Vet Medicine

Abstract

Across the world over 60 million people experience serious health-related pain and suffering as a result of living with and dying from severe illness and disease every year. Access to palliative care and pain relief (PCPR) - an inexpensive, essential, and effective set of interventions - is denied to many patients especially in low-income and middle-income countries (LMICs).
Those who suffer the most are those who are in the most need - in every country. The poorest half of our world are the 50% who live in countries that have only 1% of the distributed morphine equivalent medication that is essential to alleviating pain.
Unlike so many other priorities in global health, affordability is often not the greatest barrier to access. The tools, financial information and evidence required to enable Ministries of Health to integrate needed services into the health systems are lacking. So is the knowledge that PCPR can strengthen health systems overall and free-up scarce resources for treatment of other patients.
Our research comes at a key juncture in global health. Countries have committed to achieving the SDGs, including Universal Health Coverage, and PCPR is as essential component, especially in light of the health system challenges imposed by COVID-19. Our research is anchored and based in Colombia, El Salvador and Mexico, three Latin American countries that provide the basis of understanding the reality of PCPR in regions with limited resources and evoking the necessary change to ensure universal access.
Policy makers seek answers to questions such as: What PCPR services should be prioritized given the different profiles of disease and illness in their country? What capacity does each health system have to deliver PCPR? What is the best and safest way, including what human resources are required and what can be offered at community level, to provide PCPR services at lowest cost and most efficiently? And, how can a country provide access to PCPR to all patients and families at their time of need in ways that do not detract from health services that may be needed by others? Our research is focused on providing the tools and knowledge to answer these questions.
We will work with leading experts and institutions in palliative care, health economics, sociology, anthropology, health system design, advocacy and effective messaging from partner countries, the Americas region and globally, to:
1. identify appropriate route(s) of providing PCPR in each country.
2. provide evidence of the need for the essential medicines, equipment and type and number of health workers for delivering integrated PCPR packages in ways that strengthen health systems.
3. cost PCPR packages at current prices and compare to the best international prices to promote fair and more cost-effective access, especially to medicines.
4. work with the different parts of the health system - those who deal with the organization of services, the delivery of services, their financing, and workforce training - to identify how each can contribute to integrating PCPR and reach the poorest.
5. assess potential impact of the research based on concensus-based PCPR indicators.
6. work with policy makers from national and sub-national governments to share findings, demonstrate policy relevance and support the development of national action plans.
7. reach out to leaders in PCPR and from other communities throughout the Latin America region to share the discoveries and work out how each is relevant to their communities.
8. publish the research in leading journals in English/Spanish, and disseminate via an integrated communication and outreach strategy to inform policy makers, academics and civil society.
Our ultimate goal is to ensure that no one lives and dies with suffering that could be ameliorated with timely access to the palliative care to ensure the best quality of life until death. This is at the heart of medicine and is key to a more just and humane world.

Technical Summary

Lack of palliative care is a global health and equity imperative that will prevent LMICs from achieving the target of Universal Health Coverage (UHC) in SDG3. The raging of COVID-19 in Latin America (LA) demonstrates the weakness of health systems that lack universal access to palliative care and pain relief (PCPR). The Lancet Commission (LC) identified essential research - which this programme will take forward by focusing on LA and projecting regionally and globally.
We hypothesize that prioritizing and investing in universal access to appropriate PCPR can improve the quality of life and of dying, free scarce resources and strengthen health systems overall by improving balanced and safe access to pain relief medications. Potential impact on indicators such as opioid availability and use of tertiary beds for end-of-life care will be used to test the hypothesis.
Our research intervention uses DCP3 models to design PCPR packages, based on the UHC frameworks of progressive universalism and structured pluralism. Progressive universalism is a pro-poor, equity enhancing, preferred pathway to UHC through public financing of an initially limited set of high-quality, cost-effective interventions for population-wide delivery. The structured pluralism model builds on LA health reform experience on benefit packages as explicit entitlements to realize the right to health.
Research activities include:
1. Determine the optimal mix of medicines, equipment and human resources to design essential packages for children and expanded PCPR packages for adults and children.
2. Match packages to conditions requiring PCPR using LC methods.
3. Cost packages by country and compare to international prices.
4. Model additional cost-saving opportunities and identify opportunities in the packages to promote gender responsiveness.
5. Propose national PCPR performance indicators, and monitor against COVID-19 tracked data.
6. Convene virtual trainings focused on PCPR and health systems.

Publications

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