Since it was first published in 2008, and then updated in 2013, the ‘world map’ of palliative care development has attracted the interest of advocacy people, policy makers and fellow researchers. It remains the only attempt to assess the level of palliative care development in every sovereign state recognised by the United Nations. Results of the third iteration of the world map, based on data from 2017, will be published later this year. But meanwhile, and for the first time, we have decided to make a free standing and open access statement about the methods we have used to produce this unique analysis of how palliative care is developing in every country of the world.
There are many challenges involved in the global mapping of palliative care. The field bristles with different definitions, terminologies, types of service and varied perspectives on how progress is to be made. Amidst, the numeous debates, the ‘world map’ has proved a pragmatic source of information and a spur to action.
Its purpose is rather simple. By allocating each country to a specified level of palliative care development, it provides examples of what success might look like, as well as a tool for measuring change over time.
When Michael Wright and I first developed the levels of development, around 15 years ago, we formulated four statements that we thought captured the key issue at hand. There were countries where no palliative care activity could be observed. There were others in which some type of capacity building was underway, but as yet no service provision. Some countries had localised, patchy provision. And in some instances palliative care was approaching integration with the wider policy system, to the extent that services were widespread, and under-pinned by educational and research resources and access to appropriate medications. The first ‘world map’ was published in 2008.
When Thomas Lynch led the second world map study in 2012, the four categories were expanded to six, thereby giving better discrimination within the higher levels of development. The second ‘world map’ was published in 2013.
The results of these two studies were followed closely by the global palliative care community. They appeared in conference presentations, policy briefings, and advocacy declarations. They attracted the interest of the World Health Organization, which used the data from the second study to underpin the 2014 World Health Assembly Resolution on palliative care. Both papers have impressive citation scores and ‘world map 2’ was one of the three most downloaded papers in the Journal of Pain and Symptom Management in 2015.
Although the two studies were published in a highly respectable peer reviewed journal, they have rightly attracted the attention of researchers who saw limitations in the method of gathering and analysing the under-pinning data, and made suggestions for improvement. This is as it should be with all research and development work. Over time there has also been a growing interest in palliative care ‘indicators’ of development. These were largely unexplored 15 years ago. But now there is beginning to be some evidence about which elements that support palliative care development are the most significant – such as drug availability, the number of services in relation to population, policy recognition, educational and research resources, and the general ‘vitality’ of the field in any given country.
So when the moment came, with generous funding from the Wellcome Trust, to embark on a third iteration of the world map of palliative care development, we took the opportunity to look long and hard at the underlying method. The challenge was to improve the quality of the data we collected, whilst at the same time maintaining the facility to make comparisons over time.
A collaborative approach proved to be the way forward. In 2017 our own Glasgow End of Life Studies Group teamed up with the Atlantes research group at the University of Navarra, led by Professor Carlos Centeno and also the Worldwide Hospice and Palliative Care Alliance (which under the guidance of Dr Stephen Connor had led on the second ‘world map’ study). Between us, and with Dr Nicole Baur as the main researcher at Glasgow, we decided to re-build the study method in ways that reflected new understandings and responded to the feedback we had received over the years.
As a prelude to the results of the study, we have now set out a full account of how the third study was designed, how data was collected and analysed using 10 key indicators. The published paper is available on open access and is entitled Recalibrating the world map of palliative care development.
So now we are busy finalising our analysis of the results of the study. We are sure they will be of significant interest to the global palliative care community. We hope most of all that they can be used to support the continued development of palliative care around the world, that is so much needed.