When patients agree to participate in clinical trials (to test new drugs or treatments, devices, or other interventions), they contribute to the greater good and may even potentially expose themselves to risk of harm. They trust that the data they provide will be used to improve the lives of others. Sharing the results from clinical trials with study participants is an ethical imperative and a moral responsibility incumbent on researchers; they have the right to know the outcome of the research.
In a recent BMJ editorial, the author stresses that communicating research outcomes to participants (and more broadly to patients and communities who have a direct interest in the findings, for whom knowledge can be power) must be the default expectation.
Despite the best efforts of investigators, the results of some trials may never reach patients. Furthermore, published results may focus only on the findings of most interest to the investigators.
As a Network, we are part of a cultural shift towards participant engagement and open science. The concept of sharing results with study participants, patient partners, and the communities in where research takes place is embedded in our foundation of integrated knowledge translation.
Nonetheless, the editorial is a good reminder that we need to look past perceived (or real) barriers to communicating results to research participants. Let us look for timely and creative opportunities to make patients more informed, draw on sharing successful KT dissemination strategies, and being more diligent at building this into study design, budgeting, and governance of clinical trials, along with other elements of patient and public engagement.
You can read the full editorial HERE
Some key messages:
- Dissemination must become the default expectation for all research
- Transparent and responsible data/results sharing should become common values; this is one way to keep researchers honest and accountable.
- Publication is not a substitution for transparency; it does not follow that study participants will know about research results via publications, have access to them, or make sense of the results.
- Question untested assumptions that pose barriers to disseminating research results to study participants.
By Selina Allu, Can-SOLVE CKD KT Broker (follow me on Twitter @SelinaAllu)