The last consortium meeting for the iLIVE Project, that took place in November, set the ground for the work that will be achieved during 2021. The Covid-19 pandemic has had an impact on the way our different studies are going to develop their planned activities and so have caused a redesign of the activities, to avoid contact between researchers, volunteers and patients and relatives, and professionals taking part in the surveys. All this topics were discussed in a three day meeting that was held online to comply with the safety measures set in place in the different countries to fight the spread of this coronavirus disease.
In 2020 the iLIVE project was able to keep working in the preparation of the different research tools that will be used to collect the data, the procedures to contact and interview participants and the way this data will be processed. We now have a values framework that will be shared by all participating countries, a data management plan, a through protocol for the qualitative study and a learning lab for communication among volunteer coordinators working in the volunteer study.
The challenge behind progressing living a pandemic
The Cohort Study main goal is to contribute to high-quality personalized care at the end of life by providing in-depth understanding of the concerns, expectations and preferences of dying patients and their formal and informal caregivers. This will be achieved by a set of interviews with patients in end of life phase, both with qualitative and quantitative data. In other words, we will collect statistics about their current situation and their assessment of it, but also about their desires and needs. And we will also conduct in depth interviews to better understand their views and values. All this requires of an extensive methodology to create valid data that we are still working on even having to face major challenges because of the pandemic.
To assess and optimise our Quantitative Study, a pilot test has been conducted in all participating countries, using the final versions of the questionnaires in each home language, helping researchers identify barriers and drivers towards the implementation of this study, which will begin as soon as the pandemic allows to.
The Qualitative Study has also experienced major advances in the last months. First experiences were shared on interviewing patients, and both them and their families seem to be rather willing to participate, providing interesting and usefull information for the study. The challenge is now to be able to continue conducting these interviews in a setting where health workers are under a lot of pressure due to the pandemic, and special safety measures need to be put in force. On line interviews are being considered.
Data management is indeed one of the most complex tasks we have ahead as we are currently working on the development of the data management system. This is an important part of our job because it will allow us to compile and assess all the data that we intend to collect in the next months and allow us not only to understand the different ways patients cope with their illnesses, but also to reach valid conclusions that will allow us draft recommendations for a better strategy in palliative care. We are now in the testing phase for this tool, so we will be able to start using it in the next few weeks.
This year 2021 will also see exciting progress in the other two main branches of our project: the Medication Study and the Volunteers Study. The Medication Study has now completed all the phases previous to the start of the study, so it is ready to start rolling out in the beginning of this year. The Medication Study develop and evaluate a digital clinical tool to optimize medication management for patients who are in the last months of life. In this cases, the prescription of medication is intended to relieve symptoms and suffering, but the study will also try to reduce prescriptions, ending the use of medication that has no benefits and may involve side effects.
As for the Volunteers Study, all preeliminary training design was completed in 2020, prior to the start of the pandemic. Now, current activities consist of recruitment and training of hospital volunteers in all countries taking part in the study. Some countries still aim at face-to-face training and support, others focus at e-training and e-volunteering. This depends on the epidemic situation in each different countries. The results will not be affected by the method used in the different scenarios, as the tools have been tested under different circumstances to make it possible. The Volunteers Study will develop and evaluate an international volunteer training programme to support patients dying in the hospital and their families.