Patients and volunteers: what was decided in the last meeting

Updated: Nov 5, 2019

An important part of the iLIVE research work will deal with patients and their families and also with volunteers. So, deciding the best course of action to include them in the study and making them feel welcome and at ease with the study and its objectives is one of the most pressing topics. In the last meeting, held in the slovenian city of Bled in June, the team discussed this topics among others that are crucial to start working.





The Cohort Study

The iLive project wants 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 with a cohort study.

Physicians have a critical role in helping the team to recruit the patients and decide which ones are elligible for the cohort study. The strategy is being inclusive and providing doctors with a clear set of instructions and criteria.


The slovenian team presented a literary review on patient participation in palliative care research, which demonstrates that it is rarely experienced as harmful, although clinicians tend to think so.


Safeguarding cohort participants’ rights, safety and wellbeing is crucial. The actual recruitment will be done by a well trained researcher after the patient is being asked if they are willing to consider participation.


The project does not aim at including representative samples. Purposive sampling will only be focused at patients’ gender (more or less equal numbers of men and women in each country) and patients’ age (more or less equal numbers of older and younger patients).

Topics to be addressed in the study with the patients and caregivers include: illness perception, communication, family, control, spirituality and suffering, among others. It is important that questions are formulated openly, and it is important that the questionnaire is sensitive and acceptable.





The volunteer study

The volunteer study was also discussed. Participating countries in this study worked to reach a consensus about the final list of topics for the training program. Further development of the training programme and the protocol of the evaluation of the study was discussed. A three-day international Volunteer Co-ordinator Training the Trainers session is planned for January 2020 in Liverpool, UK, at the Palliative Care Institute, under the coordination of John Ellershaw’s team lead.


The medication study

Another important part of the project is the Medication Study. Its aim is to evaluate the ability of an electronic instrument, the Clinical Rules Reporter (CRR), to enhance awareness among physicians of the need to optimize medications used by patients who are in the last phase of life. Optimization is expected to improve patients’ wellbeing and includes both prescribing medication for symptom management and deprescribing potentially inappropriate medication (PIM).


The CRR provides alerts about potentially appropriate and inappropriate medication, based on symptoms as reported by patients and patients’ current medication list. The alerts are generated automatically by a set of rules. The ultimate goal is to measure the wellbeing of patients.


This is the most ambitious part of this study, with the aim to integrate technology in the daily rutine of hospitals and clinics in favour of the patients and relatives.

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