Does big data have a role in palliative care research?


There are just 80 days to #EAPC2022! With live sessions on 18 to 20 May 2022, and lots of on-demand content before and after the congress, this is the place of meeting for all of us in palliative care research. Ahead of the congress, we’re delighted to give some highlights of what to expect at #EAPC2022. Today, Professor Joachim Cohen, plenary speaker, gives us a glimpse of his presentation on 19th May 2022. 

Joachim Cohen
Prof. Joachim Cohen

It is a great honour to be invited by the scientific committee to address this question in a plenary lecture at the EAPC 12th World Research Congress Online in May 2022.

How can big data help advance palliative care and palliative care research? In 2003, I started my first palliative and end-of-life care research project combining routinely collected death certificate data from six countries. Looking back, it is remarkable how spectacular the evolution has been since then in data storage capacities; digitisation of health information; structures and procedures for data integration and access, and in the science of analysing these data. By way of anecdotal illustration: for the submission of one of my first papers I had to print five copies of the manuscript, snail-mail it to the journal together with a floppy-disk containing a copy. It seems unthinkable that this was less then 20 years ago. It is estimated that today more than 60 zettabytes (60,000,000,000,000,000,000 KB) of digital data exist in world. Well over 90% of this has been created between 2003 and now.

Consequently, large sets of data have in the recent period become available and this has also led to rapid changes in their use. We have seen a fast emergence of applications of these data. We have seen new fields and disciplines evolve to process these data such as artificial intelligence (AI) and machine learning. But it has also concurred with some spectacular (r)evolutions in epidemiological and health care research using observational data.

The opportunities for health care research grow quickly as more data is being digitised, infrastructures to link various data sources are increasingly implemented and, hence, the variety of data available per individual increases. While the use of big data in palliative care and palliative care research may have a slower progress than in other health research domains, its opportunities are increasingly being explored.

Assessment and monitoring of population needs has been the focus of most of the palliative care research using big data. This includes efforts to estimate the need for palliative care within the entire population, describe patterns of health care resource use or the prevalence of problems, and identify inequities in end-of-life care. The volume, velocity and veracity of big data clearly provide advantages over traditional research designs such as surveys, which often suffer from selection bias, attrition, missing data and other issues jeopardizing the generalisability of the findings.

A unique opportunity of big data is also to address questions about causality. A lot of causality questions remain unanswered in palliative and end-of-life care. These are ideally addressed in randomized control trials. However, such trials are particularly challenging in palliative care populations, may not be feasible, ethical or timely, and we cannot conduct (enough) trials to answer all causal questions relevant to palliative care. Using big data through rigorous methods can fill part of these gaps, complement trial data with real world effectiveness data, and provide (provisional) evidence on which to base decisions about implementation of policies, interventions or programs.

Various other applications are being explored such as more efficient data collection methods for palliative care trials,prediction and prospective decision support. However, we also need to be well aware of the limitations (for example, validity and reliability issues) and challenges (for example, increasing privacy regulations and restrictions for their use) and be cautious about the overrated promises attributed to big data. But big data also has the potential to improve patient and relative care and experience, when used wisely.

Join Professor Joachim Cohen on 19th May 2022 when he gives his plenary lecture: ‘The Role of Big Data In Palliative Care Research’ at the EAPC 12TH World Research Congress Online. Find out more about the congress here

About the author

Prof. Joachim Cohen is a social health scientist and a professor of the End-of-Life Care Research Group of the Vrije Universiteit Brussel. In the research group he is chairing a research program on public health and palliative care. Prof. Cohen has published over 190 articles in international peer reviewed journals and co-edited the Oxford University Press book: “A public health perspective on end-of-life care”.


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