We asked Mary Tully, from Connected Health Cities, for her tips on public engagement.
What do you do?
I am Public Engagement lead for Connected Health Cites (CHC) and co-lead for Patient and Public Involvement (PPI) for the Health eResearch Centre (HeRC).
So what’s the big deal with citizens’ juries?
Some people think that public scepticism about using patient data comes from a lack of understanding, resulting from a lack of information. But this ‘deficit model’ of communication has been long discredited. We can’t increase understanding and we certainly can’t increase trust by simply throwing more information out there. CHC and HeRC aim to deliver their public engagement by reflecting public values in the work that we do.
We need to do our best to behave in a way that is trustworthy, which is one of the reasons we did citizens’ juries. We basically asked the participants, ‘what would it take to make you trust us?’ we can then use the findings from the citizens’ juries to determine our public engagement strategies.
Where’s best to start?
While it’s great to learn from citizens’ juries, I wouldn’t necessarily recommend everyone has to start there. They are useful for some things but not others. Instead, it’s often best to borrow the high level principles and learning that others have gained and start smaller. For example, juries often show everyone uses a slightly different definition of ‘public benefit’. That could be a starting point for making sure you’re as clear as possible if you’re using ‘public benefit’ as a justification for using health data. Would everyone agree with your definition? Probably not. But at least if you tell people what you mean, it is the start of a conversation.
As well as the big, we work at the small scale too. Debating in local libraries and schools, speaking out on twitter and attending festivals are all just as valuable.
If I was starting out, where could I find out more?
I like the Research Councils’ Pathway to Impact which includes tips for public engagement, what works and why. And the National Co-ordinating Centre for Public Engagement have some great resources too.
Do you have any favourite highlights?
The CHC team have been part of the Bluedot festival and Manchester’s Caribbean Carnival. It’s really important to go out into the community as well as have patient forums and citizens’ juries. Community events like these support ongoing conversations even after we’ve packed up our stalls and gone home.
What’s your golden rule for talking about patient data with the public?
Remember that just because people disagree with you doesn’t mean they are wrong! We have a lot to learn from people who are passionate about data privacy, so go out and talk to them.
In conversation with...Mhairi Aitken on using humour and stand up comedy to connect with a wider audience.