Data for palliative care

Healthcare, Statistics

On September 4-11, 2018, specialists of the Ukrainian Center for Social Data with the support from the Ministry of Health of Ukraine and the International Renaissance Foundation conducted a series of round tables on modern approaches to use of data for palliative care in Lviv, Odesa, Kharkiv, Dnipro, and Kyiv.

Palliative care is a special type of medical care for people with serious, life-threatening conditions aimed at alleviation of their symptoms and suffering, and improvement of quality of life of patients and their relatives. Usually, palliative care is associated with painkillers and other types of end of life support.

As a result of medical reform palliative care now is supposed to be covered by the state. At the same time, the National Health Service of Ukraine will fund only services with reliable data.

There were more than 160 palliative care, social protection, information and analytics specialists who took part in the discussion. They discussed the following issues:

  • The international experience in working with palliative care data, indicators and the Death Quality Index, quality standards for medical services in the United Kingdom, prospects of funding palliative care.
  • Proposed changes to procedures of provision of palliative care in Ukraine including use of detailed data on patient’s state to assess their need for palliative care, use of international scales, registering data and their integration into electronic medical information systems.
  • Assessment of a need for palliative care in Ukraine and practical problems with its provision.

Leading experts took part in the discussion:

Lesya Bratsyun – advisor to the Minister of Health, expert of the Ministry of Health in geriatrics, palliative and hospice care.

  • Ludmyla Andriyishyn, expert of the Ivano-Frankivsk oblast Health Care Department, head of the mobile/counseling department of the Oblast Clinical Center for Palliative Care in Ivano-Frankivsk.
  • Andriy Rokhansky, doctor and a human rights activist from the public organization the Institute for Legal Research and Strategies.
  • Yevhen Horokh – deputy director of the Department for Standardization of Medical Services, head of the Department for Quality of Medical Services and information technologies within the State Expert Center of the Ministry of Health of Ukraine.

The Ukrainian Center for Social Data presented a new publication Data for palliative care: international experience, Ukrainian reality, standards, indicators and assessments.

Data for palliative care (ukr)

The guidance includes a review of experience of countries with a high quality of death, in particular the United Kingdom, WHO recommendations, practical tools for assessment of a need for palliative care with the help of special scales. A large portion of publication deals with assessment of needs for palliative care in different regions of Ukraine. The Ukrainian Center for Social Data involved specials in demographics, cancer, tuberculosis, and pediatrics in development of assessment methodology; there were used routine data from the State Statistics Service of Ukraine, the Medical Statistics Service, the National Cancer Register, and the Register of patients with tuberculosis.

Comments and suggestions on improvement of the palliative care system in Ukraine were collected after round tables.