On November 8th the EBRNetwork and Western Norway University of Applied Sciences arranged the seminar ”Redundant and dangerous health research – how can you support better research practice?” At the seminar, the consumer statement made in the BMJ article Towards evidence based research, written by our EBRNetwork colleagues, was discussed at length. It states:
“Before agreeing to participate in research, patients should demand that research projects have been informed by systematic review of what is already known”.
The discussion concerned the implications of this statement for consumers, as they may not immediately be clear.
The BMJ article is about changing research practice. The consumer statement is simply a statement about how consumers can help to achieve this important mission. If it becomes standard practice that consumers ask for systematic reviews researchers will be encouraged and eventually lead to a necessity to use systematic reviews.
Tone Hansen, chairwoman of the Norwegian Blood Cancer Association, participated at the Bergen seminar and made a very important point. Does the consumer statement imply that consumers should not agree to participate in research projects if a systematic review does not exist? The answer is no. Not all research have been conducted before and there will be cases when systematic reviews do not exist. The problem arises when researchers do not use systematic reviews that do exist. We want all consumers to know if researchers have completed their homework.
It is important to note that we are not in a position to tell consumers when or when not to participate in research. That is ultimately an individual choice. What we want is for all consumers to be able to make well-informed decisions. They should be given all the facts, and make decisions based on those facts. The problem, that we want to highlight, is that when researchers fail to refer to systematic reviews, or cite previous research, they are not providing all the facts.
Evidence-based research prevents consumers from participating in dangerous research projects unknowingly. The consumer statement encourages consumers to help to change research practice and encourage the movement towards motivating researchers to be evidence-based. To make this clearer we suggest a change to the consumer statement:
“Before agreeing to participate in research, patients should ask for the systematic review(s) that has informed the research project”.
We welcome all comments and/or suggestions to this new statement.
Hanna Nykvist
Consumer Representative &
Project Manager of the EBRNetwork