Online deliberative engagement: a pilot study

The Wellcome Trust invited a partnership between Brook Lyndhurst, the University of Surrey and web development agency White October to explore the feasibility of using an online tool to engage the public around biomedical science. Participants were recruited through ICM’s ‘It’s Your View’ online panel before completing a brief online questionnaire. They were then taken through a series of short sections of text and asked to submit questions and make comments. The project team then responded to these questions over the next two weeks before inviting respondents back to complete a final set of questions testing changes in attitudes and awareness.

Objectives
This project tested the capacity of our online tool to:

• provide an environment where participants felt able to consider new information and to both ask about and comment upon this;
• provide feedback that was relevant and responsive to the particular comments and questions that people had made; and
• build in methods of capturing the ways in which people had engaged with the tool.

Methodology
85 respondents completed the study in four waves, allowing us to improve the calculator and general approach in between waves. Half of our respondents were given flat rate incentives of £25; the others were paid £1 for every five minutes the exercise took them (averaging a total of £7). This allowed us to test the impact of variations in incentives.

Participants registered on the site and completed a short series of pre-text questions. They then read 9 short chunks of text. Glossary terms could be highlighted by the participant if they wished to gain further information. Alongside this text participants had the opportunity to ask questions or to comment on the text. The first stage of the study finished with participants completing a series of post-text questions. The project team emailed each respondent with confirmation of the questions and comments they had asked for responses to. The team conducted the necessary research to provide feedback on all questions participants had submitted and this was emailed to participants. They were asked to read this before logging back onto the project website. Upon logging in they completed a final set of post-task questions.

Findings

• Unlike most methods of public engagement, the development of this tool has focused upon eliciting the questions that people have about a particular topic. The results suggest that this focus is likely to be a productive one insofar as people who were less confident that they knew about personal data generated significantly more questions and comments.
• Second, greater engagement with the tool led to a significantly greater increase in self-assessed knowledge. This is important as the change in this measure seems to represent these peoples’ genuine sense that they have learned something.
• The lack of any relationship between engaging with the material and assessments of how comfortable people were with the idea of their personal data being used for medical research serves to highlight the importance of not considering increasing knowledge instrumentally as a simple route to acceptance.
• Examination of the nature of the questions and comments produced by participants suggested that they embodied some of the key indicators of deliberation
• The output of the tool provided an array of both qualitative and quantitative data about participant understandings of the use of personal data in medical research.
• There are a range of possibilities for further developing the tool’s potential.
• Using the tool in its current form makes considerable demands upon researcher time in terms of providing information in response to the questions participant questions ask.