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 (QI) 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 National Statement on the ethical conduct in human research notes there is no generally agreed definition of research. [1] Some authors suggest that research intends to create new knowledge that can be generalizable to other populations and settings, while QI and audit use existing knowledge to improve health care outcomes within a local health care institution or setting. [2] However, there can be confusion about whether an activity is research, evaluation or QA as there may be similar research methods used. The National Health and Medical Research Council has produced guidance that aims to help identify triggers for the consideration of ethical review and is designed to assist organisations in deciding the appropriate level of oversight for quality assurance and evaluation.[3]
There can be differences in practices in different services, so it is worth clarifying any state or service expectations with regard to the conduct of any studies particularly with regard to ethical approval and study governance.
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.'
