When it comes to research communication and public engagement when we want to assess how much impact a project has had we have a wealth of evaluation tools at our disposal - question and answer sessions, surveys, as well as dozens of digital metrics that give us a sense of how well we’re engaging people with research.
But sometimes we come across a public engagement campaign that goes way beyond mere metrics. When a research discovery with the power to transform people’s lives overwhelmingly for the better is communicated in such a powerful and compelling way that it forces a shift in the status quo.
This episode tells the story of one such project. It’s the story of a team of scientists and doctors from Newcastle’s Wellcome Trust Centre for Mitochondrial Research who spent years campaigning strenuously, alongside patients, to persuade UK policymakers to pass a law that would permit the use of a pioneering but controversial fertility treatment
The team from Newcastle hoped that the IVF treatment, known as mitochondrial donation, might halt the transmission from one generation to the next of a devastating, incurable and often fatal condition - mitochondrial disease - that blights the lives of many thousands of families across the world.
In 2015 the five year long campaign reached a dramatic conclusion when Parliament made its landmark vote on whether or not the treatment should be allowed in the UK.
It was huge victory for the campaigners, shared amongst the doctors, scientists, patients and their families but much credit has to go to the man who spearheaded the campaign, Professor Sir Doug Turnbull.
Professor Turnbull is one of the world’s leading experts of mitochondrial disease and last year he was given a knighthood in recognition of his dedication, spanning decades, to the study of the disease and to the care of patients afflicted by it.
I’ve been fortunate enough to work with Doug and his team for a few years on their public engagement projects but my involvement with their work started after the climax of this dramatic story of their Parliamentary success, so I was very excited to sit down with Doug a few weeks ago to hear all about the campaign from his perspective, as well as hearing his insights generally into the power of public engagement.
Here are some excerpts from the interview:
How did you deal with those who were fundamentally opposed to mitochondrial donation, for example those who object to it for religious reasons?
We certainly engaged with all groups, and it wasn't that we didn't want to engage with certain groups but I suppose what I tried not to do was to be deliberately antagonistic.
I had several offers from programmes like Newsnight to debate this but I felt like, I'm not going to change their view and they're not going to change my view, and all it is is providing argumentative TV which I just felt I didn't want to be involved in.
It seemed to me to be far more important that the public and the politicians understood the situation, rather than getting involved in an argument that I could never win or I could never lose, because I wasn't going to change my views and they weren't going to change their views.
Why is public/patient engagement such an important part of what you do?
It's both a question of educating and learning from the patients, that's a very important aspect. It's very much a two-way process. We want to know what's important from a patient perspective, and we want to try and provide them with the information that will allow them to have choice.
Mitochondrial disease is quite complex and so there is an educational component of that but that education has a purpose and that purpose is ultimately to improve patient care.
In this time of considerable tensions in terms of resource allocations in the NHS and time that you have, it's understandable that with patients with complex needs, people struggle, whereas at least we have the time, and I suppose the knowledge, to look after those patients.
And that feeds into the research, because having heard about those patients' needs from the patients, that's very much directed where we're going with the research. For example, our need to run clinical trials to try and improve the treatment of patients. It's very clear that that's important. And it's very important to us to find out which symptoms patients find particularly troubling.
Because without that engagement we could be treating something and getting wonderful results for something that actually made no difference to the patients' lives at all.
What advice do you have for scientists and researchers who are interested in becoming more involved with public engagement?
I think that it's an extraordinarily rewarding experience. I think that scientists, especially when we're receiving public funds, have a duty to feedback and to communicate and to engage with the public, and with patients if you're working in a medical context.
I think it is appropriate that you get a little training - or a lot of training in my particular case! And to embrace it. I really feel that one of the problems that we have in society is that scientists don't engage enough and without that the public will not understand science, and it will be very difficult to get advances like mitochondrial donation through if we don't have patients and a public who are scientifically literate. I think that's something that we should all be thinking of.
Peter Barker runs Orinoco Communications, a digital communications company specialising in the communication of research in science, the social sciences and the humanities.