Essential to an evidence-based approach to palliative care is well-designed research to answer important questions relating to issues affecting palliative care patients and their families, friends and caregivers. Palliative care provides a rich and challenging set of research questions. As research in this setting focuses on patients who are approaching an expected death, there are many medically, ethically and psychosocially complex issues to consider. There are a number of challenges that are unique to or significant in palliative care as a research setting:
- The difficulty with recruiting and retaining study participants whose health is declining and who are approaching death
- The need to include perspectives that reflect the multidisciplinary nature of palliative care provision
- Problems with building collaborative research teams and conducting research across the range of settings in which palliative care is provided
- Challenges related to identifying and contacting family members and caregivers who have been consumers of palliative care
- The difficulty of how best to measure effectiveness and cost-effectiveness of treatments and services in the midst of inevitable deterioration in a dying patient
- The challenges of engaging clinicians in a sector where there has not traditionally been a research culture. This includes building infrastructure, and building expertise in the range of different methodologies appropriate to different research questions in palliative care
- The predominance of investigator-led over pharmaceutical company-led research in palliative care limits financing opportunities for researchers.
Is it research?
Many important activities involve the careful collection and analysis of data about palliative care. Some of these related activities include audit, benchmarking, evaluation and quality improvement processes.
These activities involve many of the same general principles as good research, such as:
- Defining the question which the activity is designed to answer
- Clarifying in advance appropriate methods to be used to answer it
- Introducing measures to minimise bias
- Feeding back the results to those involved in order to better understand and / or improve some aspect of palliative care.
The Health Quality Improvement Partnership has produced a guide which outlines differences between audit, research and service evaluation activities. Unlike research, audit and service evaluation usually do not require ethics approval, as there should be neither risk to participants nor any direct impact on them of the data collection process. Usually these activities involve methodically studying information that a service already collects routinely, in order to answer a specific question.
Sometimes additional questionnaires or surveys may also be undertaken.
If there is any significant burden on the participants (whether they are staff or patients) or if it is intended to present the information outside the palliative care service that is involved, for instance by publishing or presenting it at a conference, then ethics approval is likely to be required and the project is considered as 'research.'