From patients to practitioners to scientists, and back again: reversed science cafés

13 December 2019
For science to have maximum societal impact, the specific knowhow and experiences from different stakeholders, including patients and citizens besides researchers, academia, clinicians, industry, funders, government, should be better valued, from research priority setting, over discerning research goals, to translating the results into potentially wide-ranging benefits for society. In other words, a multi-stakeholder dialogue reinforces impact. Still today this societal outreach is too often limited to one-way information monologues ex cathedra by researchers or academics, with limited room for interaction, let alone consultation.

Enter reversed science cafés
Reversed science cafés are a relatively new format of interaction that focuses on the discussion of societal and
ethical but also potential impact aspects of the latest scientific work or novel technologies. Both the general
public and expert scientists participate in these events. The dialogue begins with questions or statements the
experts have prepared for their audience. The answers often provide new insights for the scientists and fertile
grounds for further enquiry and research. 

During these events usually a methodology is followed whereby the dialogue is executed in small rotating groups, each of which tackles a specific set of questions, as presented by the expert and supported by a moderator and reporter. The key thing is that no one is talking to someone, but that the participants are talking with each other. Scientists can update the audience on the state of their research and what they’re currently working on, unhindered by paywall barriers or jargon-laden papers. The audience, commonly including patients or citizens if the topic at hand involves research into one or more diseases or societal challenge, can relate their experiences directly to the people working on potential treatment options or assistive technologies or solutions. Real-life testimonies are invaluable for scientists and clinicians and other experts who seek to attain maximal impact with their research. Such first-hand accounts can reveal neglected problems or areas that might warrant further attention. This way, scientists and clinicians learn new things too, even about the topic they are specialized in.

Reversed science cafés leave the general public with an improved understanding of the current state of the research into a specific topic. The participating experts are pulled away from their real or metaphorical microscopes and get a close-up of the social, ethical, and patientrelated aspects of their work that may not always get the attention they deserve. Win win.

A real-life example: VIB’s Grand Challenges PID event
On March 17, 2019 researchers and clinicians involved in the PID Grand Challenge Project welcomed 115
patients and their families at the VIB-UGent FSVM Research building for an interactive morning program.
The event was co-organized with Bubble ID, a PID fund from CPIG, the Centre for Primary Immunodeficiencies Ghent that wants to burst the bubble of isolation that surrounds both the condition and the patients. 

Beyond scientific proceedings in PID, lab tours, and kids only workshops (got to keep them busy, no?), the event also included a reversed science café. The participants were divided into groups of about 8 persons each, including teenager or adult PID patients, parents and grandparents. An expert clinician or researcher explained the question or statement and another researcher or patient representative acted as moderator to ensure a productive conversation. After a while the participants of the groups moved to another table with different experts. This way, many aspects of PID could be discussed. This was followed by a roundtable discussion to formulate general conclusive remarks.

Experience of participating in reversed science café:
“As a researcher I have been studying the underlying mechanisms of PID for years, learning from patients and
their family how they ‘live’ the disease and what their needs are was most encouraging to continue and guide
our research.” - Researcher 

“Learning about the current R&D is most interesting to us, being consulted during the reversed science
café empowers us and that is most reassuring.” - Grandparent of young PID patient

“Being able to enter into a dialogue with patients in another setting, together with basic scientists creates an
atmosphere of trust, a true added value.” - Clinician


Go back to the overview:  'Great Science has many supporters'​​



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