A User-friendly Global Data Platform to Calculate Serious Health Related Suffering and the Need for Palliative Care

chris@csa.co.za
By chris@csa.co.za October 14, 2019 14:45

A User-friendly Global Data Platform to Calculate Serious Health Related Suffering and the Need for Palliative Care

Released by the International Association for Hospice and Palliative Care (IAHPC), the University of Miami Institute for Advanced Study of the Americas and the Mexican Health Foundation based on the work of the Lancet Commission on Global Access to Palliative Care and Pain Relief 

To mark World Hospice and Palliative Care Day 2019, the International Association for Hospice and Palliative Care (IAHPC) together with the University of Miami Institute for Advanced Study of the Americas (UMIA), and the Mexican Health Foundation (FUNSALUD) are launching a platform to facilitate access to the data produced by the Lancet Commission on Global Access to Palliative Care and Pain Relief (LCGAPR) for advocates, academics, public health experts and policy makers. The platform, created by researchers at UMIA and FUNSALUD, works in Tablea and enables users to calculate serious health related suffering (SHS) and the need for palliative care by income and geographic region for a vast number of countries. The platform is housed in the IAHPC website, as a service to the global palliative care community. 

A User-friendly Global Data Platform to Calculate Serious Health Related Suffering and the Need for Palliative Care 1

View the database

The data come from the LCGPAR Report “Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage” and an extensive data appendix. The LCGAPR report aims to (1) quantify the heavy burden of serious health-related suffering associated with a need for palliative care and pain relief; (2) identify and cost an essential package of palliative care and pain relief health services that would alleviate this burden; (3) measure the unmet need of an indispensable component of the package—off patent, oral, and injectable morphine; and (4) outline national and global health-systems strategies to expand access to palliative care and pain relief as an integral component of Universal Health Coverage (UHC).

The release of this data platform satisfies a commitment adopted by advocates and researchers during the launch of the Lancet Report at the University of Miami in April 2018 as a task of the LCGAPR Implementation Working Group. At the time, global, regional and national leaders, as well as researchers and advocates made the commitment to disseminate the LCGAPR results as part of a broader strategy leading to the integration of the essential package of palliative care health services. 

SHS is associated with illness or injury of any kind that could be alleviated by palliative care or pain treatment. The LCGAPR developed a framework for measuring the global burden of SHS across 20 life-limiting and life-threatening conditions most associated with a need for palliative care, and 15 associated physical and psychological symptoms. 

The massive scale of human suffering uncovered by the LCGAPR, demonstrated the enormous need for palliative care and pain relief in our world. In 2015, more than 61 million people experienced SHS that could be ameliorated by palliative care and pain relief. These individuals suffered at least 6 billion physical and psychological symptom days. Over 80% of this SHS burden occurred in low- and middle-income countries (LMICs) where access to palliative care, even oral immediate-release morphine for pain relief, is extremely limited. Every year almost 2.5 million children die with SHS and more than 98% of these children are from LMICs. A large proportion of the current SHS burden is associated with non-communicable chronic diseases such as cancer, dementia, cerebrovascular disease, and lung disease, a burden that will only increase as populations age. Globally, approximately 15 million cancer patients experience SHS every year. 

The SHS data platform is a resource that can empower and significantly improve the capacity of civil society organizations and policy makers to implement more effective and secure palliative care and pain relief policies and programs to alleviate the suffering of millions of patients and their caregivers around the world.”, said Felicia Knaul, Chair of the LCGAPR and Director of UMIA. See video from Dr. Knaul on the publication of this database.

A User-friendly Global Data Platform to Calculate Serious Health Related Suffering and the Need for Palliative Care 2

A User-friendly Global Data Platform to Calculate Serious Health Related Suffering and the Need for Palliative Care 3

Lukas Radbruch, Chair of the IAHPC and a Commissioner of the LCGAPR commented “This database is an excellent 

resource that will result in additional research and studies on the status of SHS and the need for palliative care provision.”

A User-friendly Global Data Platform to Calculate Serious Health Related Suffering and the Need for Palliative Care 4

Liliana De Lima, Executive Director of the IAHPC and also a Commissioner, thanked all the individuals and organizations who collaborated in this process, and especially Dr. Felicia Knaul and her team at the University of Miami for their work and for sharing this database with the world.

The ongoing work of the LCGAPR and implementation of its recommendations is a broad effort led by the IAHPC and the UMIA with self-financing and grants from a wide variety of organizations and working with various public and civil society organizations worldwide. The creation of an online data visualization tool for the LCGAPR was partially sponsored by the Wellcome Trust Foundation and the Gonzalo Rio Arronte Foundation in Mexico.

Future developments – A webinar describing the database and the data visualization platform, and its uses and applications will be available in late 2019. In early 2020, the database will be populated with updated numbers, including mortality, morbidity and distributed amount of opioids across countries.

The database is available in the IAHPC website (enlace a nueva pagina). The full LCGAPR report is available at The Lancet, and fact sheets and more background information is available in the UM Website including the detailed description of the data. 

1 Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: The Lancet Commission report. Lancet 2018; 391(10128): 1391-454 //www.thelancet.com/commissions/palliative-care

2 Supplement to: Knaul FM, Bhadelia A, Horton R. Health-related suffering: from Lancet Commission to DeclarAction. Lancet 2018; published online May 18. //dx.doi.org/10.1016/S0140-6736(18)31123-1

 

About the IAHPC – The International Association for Hospice and Palliative Care is a global non-profit, membership organization dedicated to the development and advancement of palliative care to assure that any patient’s and family caregiver’s suffering is relieved to the greatest extent possible. IAHPC works with UN agencies, governments, associations and individuals, to develop and implement appropriate policies for the inclusion of palliative care as a component of Universal Health Coverage; increase access to essential medicines for palliative care; foster opportunities in palliative care education, research and training; and increase service provision around the globe. For additional information visit the IAHPC website.

About the University of Miami Institute for Advanced Study of the Americas – Established in 2015, the University of Miami Institute for Advanced Study of the Americas brings together relevant scholarship, furthers policy dialogue, and builds strategic knowledge partnerships to address challenges faced by the Americas in the 21st century. The institute promotes human, economic, and social development across Latin America and the Caribbean through research, teaching, convening, disseminating, and incubating innovative projects. For additional information visit the UMIA website.

About the Mexican Health Foundation (FUNSALUD) – FUNSALUD is a top-rated research and policy-oriented think tank, with over 30 years of experience as a local, regional, and global leader in developing evidence for policy making in health in the Latin America region. FUNSALUD has the mandate and capacity to manage funds globally. It has established, in-house, project management capacity and a strong history of leading multi-country research and service-delivery programs. FUNSALUD is a registered charity in Mexico and maintains full recognition by private (CEMEFI), academic (CONACyT) and public (INDESOL, Ministry of Finance) organizations. For additional information visit the FUNSALUD website.

 

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chris@csa.co.za
By chris@csa.co.za October 14, 2019 14:45

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