When I am buying a coffee and the barista asks for my email address, something inside me tenses up a bit. Why do they need this information and who else are they sharing it with? These thoughts make me far less willing to give out my information.
As curious scientists do, we wanted to see if people felt a similar level of unwillingness about participating in research studies where they were told that their anonymized research data (i.e., data stripped of all identifying personal information) would be shared with other research groups. This is the principle behind Open Science, which aims to improve accessibility and collaboration in research by sharing anonymized data among peers.
We know that there are many factors that can impact a person’s willingness to participate in a research study, such as monetary costs, logistics issues etc. However, we do not know how much the presence of open data sharing influences a person’s willingness to participate in research.
This is the main question that we aimed to answer with this study, but we also had some secondary questions too: How do people weigh the risks and benefits of open data sharing against other risks and benefits of research participation? Does the way that information is presented matter?
To answer all these questions, we presented participants with descriptions of hypothetical research studies and asked them to rate their willingness to participate in these different studies.
The studies differed in two ways: one study was highly burdensome in that it involved a greater number of study visits, whereas the other study involved fewer study visits. The other difference was that one study involved open data sharing whereas the other study did not. Importantly, we also changed the way that information was presented because we know that allowing people to compare study characteristics can influence the way these characteristics are evaluated. Therefore, some participants had the opportunity to compare both studies side-by-side and rate their willingness to participate, whereas other participants only evaluated one of the studies.
What did we find? When both studies were evaluated side-by-side, participants preferred to participate in the study involving no open data sharing and fewer study visits. In contrast, when no comparison was possible, participants had a slight preference for the study with open data sharing even though it also involved more study visits.
When we questioned participants about their attitudes towards open data sharing, 40% expressed concern about who their anonymous research data would be shared with and for what purposes. 92% of participants trusted their data to be shared with university scientists, compared to 78% trusting sharing with government agencies, and 61% for sharing with pharmaceutical companies.
Importantly, 81% of participants preferred for their research data to be open compared to 18% who preferred it to be restricted. This suggests that most participants see the benefits of Open Science, which we confirmed by questioning participants directly. Participants stated that the most common benefits of open science were that it “helps get answers to scientific questions faster using information that others have already gathered” and it “helps scientists check the accuracy of research results reported by other scientists of companies”.
Overall, there is a general positive attitude towards open data sharing approaches in research, however the way that trial information is presented can influence preferences about willingness to participate.
We are working on writing up the full results of this research into a manuscript. We will update this blog post with a link as soon as it is available!
And if you’re interested in participating in our ONLINE research studies, or have comments to share with us, please don’t hesitate to contact us at: madeleine.sharp@mcgill.ca or sharplab.neuro@mcgill.ca.
We need all the help we can get to advance on our understanding of how Parkinson’s disease affects people!
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