29 Oct, 2020

What do research participants want?

We asked our community what they would want from participating in research - the results are in.

Back in August, Sano launched a survey asking participants to share how they feel about taking part in research. The survey responses will give us vital information to help develop an online platform (funded by Innovate UK in partnership with Genomics England) with the aim of advancing medical research.

Between August and September we received nearly 900 responses from members of the Sano community, participants in the 100,000 Genomes Project and numerous other patient groups, with the majority of respondents living in the United States (59%) or the United Kingdom (26%).

Participants reported a range of experiences with their health.

Image showing key respondent demographics

The conditions represented in the responses ranged from diabetes and asthma to stage IV breast cancer and cystic fibrosis.

Despite this array of conditions, we were surprised to find that 80% of respondents said they’d never been asked to take part in research. Just 16% of participants said they had taken part in some kind of clinical research and 4% had been asked but chose not take part.

Encouragingly, there was still a high degree of interest in taking part in research, with 64% of respondents saying they would be ‘very likely’ and 31% ‘somewhat likely’ to volunteer for a study if a healthcare professional said they would be eligible.

Why take part in research?

We also asked those who had taken part in medical research in the past what they thought were the best things about participating.The most popular answers included:

  • -The potential to help others
  • -Finding out more about health issues for themselves and others like them

“Feeling that our voices might be heard and improving experiences for other families in similar situations” - anonymous survey participant

The survey answers have also helped us to identify where the research participation experience needs to improve, with key points including:

  • -Providing more information about the results of research
  • -Improving access to the information and data patients contribute
  • -Reducing the time it takes for results to come out

Key outcomes

Overall, the responses we received show that both past and potential research participants want to be kept informed about research results, and for their doctor to receive a copy of the data they contribute in order to help manage their condition. As experienced researchers ourselves, we’re sorry to say this is not how most research is currently designed or conducted.

But the research community can do better, and it must. With insights from this survey, and our research patient-focussed design workshops, Sano is looking to build a more participant-focused research environment that can encourage more people to volunteer for research, overcome their reservations and be part of the fight to develop cures faster.

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