Bregje Onwuteaka Philipsen (Amsterdam UMC, Netherlands) and Lucas Morin (Karolinska Institutet, Sweden) are the Guest Editors of the special issue of ‘Palliative Medicine’ on ‘Big Data in Palliative and End-of-Life Care’.
Big data is everywhere. We use complex algorithms to find our way to the closest grocery store, to decide where we will spend our next vacations, to control the temperature of our living room, or to see how far we are from the 10,000-step daily routine that our significant other insists we should follow.
Healthcare insurers perfectly understand the value of using routinely collected data to anticipate care needs and to focus economic resources on patients who are the most likely to require specific interventions in the near future. Public health authorities, local care commissioners and hospital managers are also relying heavily on claims data and electronic medical records to organise the provision of medical services according to the expected needs of the population. More recently, researchers and clinicians have started to express a strong interest in wearable sensors to monitor patients at a distance – bolstered by the availability of affordable and reliable devices and by the intense persuasive effort of high-tech manufacturers.
Big data also has powerful applications in research. It allows, for instance, for verifying whether the evidence from published randomized controlled trials applies to the real-world population, for comparing the effectiveness and the safety of various interventions in settings where such trials may not be practically feasible or ethically acceptable, for evaluating the quality of care provided to patients in different countries, or for making prognostic predictions based on seemingly imperceptible data patterns. Routinely collected data are not susceptible to the usual methodological caveats of surveys and clinical studies (namely, non-representativeness of respondents, attrition due to non-participation, recall bias). Linkage with physiological and biological data stored in very large biobanks paves the way for new research questions about the respective role of genetic, familial and environmental factors.
Yet, whether big data can be of use to develop palliative care and to improve the life of patients with serious illness remains largely unknown. While the past decade has been characterized by a considerable number of observational studies making use of large datasets of routinely collected healthcare data (e.g. Medicare, The Surveillance, Epidemiology, and End Results [SEER] Program), most of these studies have remained strictly descriptive.
In 2018, the European Association for Palliative Care (EAPC) mandated a task force to examine the current state of the science on the utilisation of big data in palliative and end-of-life care, to identify important knowledge gaps, and to establish priorities for future research. The first results from the task force’s ongoing work show that there is a need to focus on patient groups that are currently under-investigated (e.g. children and young adults, patients with organ failure, frail older adults, underserved minorities), and that important methodological issues should be addressed (e.g. quality of record linkage across data sources, inclusion and analysis of patient-reported outcomes, risk of bias arising from the use of retrospective cohorts of decedents rather than prospective study designs).
The publication of a special issue on ‘Big Data in Palliative and End-of-Life Care’ in Palliative Medicine (2019 impact factor: 4.958) is a great opportunity. We are looking for high-quality contributions from across health and social sciences that have the potential to appeal to an international audience of clinicians, researchers, managers, educators and policymakers. The deadline for submissions is Friday 17 April 2020.
- View more information and instructions on submitting your manuscript here.
- Find out more about the EAPC Task Force on Big Data in End-of-Life Care Research. (You can contact Bregje and Lucas through this webpage).
- Follow Lucas Morin on twitter @lucasmorin_eolc
EAPC Researcher Awards – closing date 30 November 2019…
Have you made an outstanding contribution to research and clinical practice in palliative care? Don’t be shy – apply for #EAPC2020 Researcher Awards NOW! Find more information on the EAPC World Research Congress website here.