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Improving administrative data research with public engagement

By Carol Porteous

Email: carol.porteous@ed.ac.uk

  

I feel a bit daunted by the prospect of writing the first ADRN blog on the topic of improving administrative data research with public engagement. While this is me writing on a subject in which I am well versed and is something I talk about on a daily basis, in fact this feels like a different creature, a different audience. Questions are running through my head; such as how do I pitch it right? will it be relevant to the people that might read the blog? will it be relevant to data scientists? will anyone read it?

One key issue that can often takes up much of a research paper’s introduction is defining terminology, and indeed public engagement also suffers from a plethora of differing definitions and often of individuals’ intangible personal perspectives around what public engagement truly means. I am not going to dwell on defining public engagement, but I would like to tackle one tricky issue.

As the use of social media such as Facebook and Twitter have increased, I feel that we are asked to give soundbites, and try to say something meaningful in 140 characters. But as academics much of the work that we do is complex, and cannot and should not be reduced to 140 characters or a soundbite. Meaningful communication with publics is about public informing, which may lead to public engagement, but I would like us as an academic community to progress from thinking that public engagement is informing the public about our research in a static, one-way route. Giving the public information, creating media and publicity can generate public engagement, but in and of itself that is not public engagement. At its core public engagement is about dialogue with publics and communities affected by our research, or dialogue on issues that could affect all citizens.  It seems more obvious perhaps that a health researcher working in diabetes would seek input from those with relevant knowledge and lived experiences but what of the social sciences?  What would drive social scientists to seek public engagement in social science projects, especially those that are primarily data driven? 

Working in public engagement for the past ten years, I think I have heard every reason for people being reluctant to the idea of, or just simply not wanting to do, public involvement or engagement. I have also heard every reason for why it is costly in time and money, and simply an unsuitable activity. These views prevail, but then the research process might not quite proceed as planned in the academic environment; when the funding application can be rejected with the feedback citing the public engagement flaw in the application; when a requirement of data access is that the public are engaged in the process; when the public withdraw support from the endeavour (as in the case of care.data).

 

I embark on this blog post fully acknowledging three fundamental positions I occupy in relation to public engagement and involvement:

1. The epistemological argument:

I believe public engagement supplies knowledge that is otherwise unattainable, in that the public can impart knowledge of their own lived experiences, circumstances and health conditions. This can be of benefit to researchers, who may not have first-hand experience themselves of the issue they are researching.

2. The consequentialist argument:

I believe that public engagement can improve the quality of research.

3. The moral imperative:

I believe that public engagement is essential because the public have the right to be involved in any publicly-funded research.

The moral imperative suggests that as part of the democratic process the public have a right to be involved in publicly-funded research. Additionally, it is partly through public engagement and academic visibility that publics imbue trust in academic researchers and their endeavours.

Sheila Jasanoff in her work on Science and Technology studies demonstrates that publics gather around issues of concern, as happened in the case of care.data, and I would suggest that it is often an absence of public engagement that leads to these concerns in the first place. The use of health or non-health data has become somewhat controversial given that data is being used for a purpose other than that for which it was collected.

In ADRC-Scotland along with colleagues in the Farr Institute@Scotland, we are undertaking a programme of research looking at public acceptability and public views, both of the broad issues in administrative data research and also looking at particular research questions or linkages that communities may be interested in, and potentially unpicking the nuanced social and ethical impacts or perspectives that publics may have. This work underpins ADRC-Scotland by providing evidence and knowledge to our researchers, and contributes to our developing research with the public that helps build public trust and transparency.

The ADRN states that it is about ‘enabling studies that benefit the public’, so we need to keep asking: how can we know if something is of benefit to the public?

There are arguments that any scientific research of itself has some public benefit, even if the public don’t understand it as such; but research conducted by the ADRN is intended to be applied and policy relevant, so there should be a discernible benefit. We don’t yet have a working definition of public benefit. So, clearly, understanding if a project’s potential benefits are actually perceived as such by the public can only be done by speaking to communities and publics about those issues.

At ADRC-Scotland we have a fantastic public panel that has really started to contribute to the research process, and is participating in conversations around the use of data. Most recently, we had a discussion around the use of criminal convictions data, and whether there would be public benefit to link that to other datasets. The panel engaged in an interesting debate around 1) the data itself and where it comes from, 2) grappling with what we can do in Scotland in comparison to our European neighbours, and 3) whether there we can say there is a public benefit and weighing up potential negatives and potential positives

Public engagement is I think something researchers either love to do or hate to do; at times it feels a bit like the Marmite of academic research processes.  One key lesson I have learned over the past 10 years working in public involvement and engagement is that the overwhelming positive isn’t necessarily what your engaged public say or do inside your research, but it’s just the having them at the table that makes the big difference.

“My public engagement activities have given me a new perspective and broader outlook to my own research work” (Prof. Jim Al-Khalilli)

Much of the time my experiences have led me to conclude public engagement can do a lot to change the attitude of a researchers, whether it’s reminding a researcher that a woman with breast cancer still wants to feel like woman rather than a woman with breast cancer; or to remind them that just because a person is assigned a particular label (unemployed; criminal; diabetic; arthritic; academic) doesn’t mean that one label describes everything about them, or can or should be used in a reductionist manner. The knowledge of publics can be enormously beneficial to your research, in providing contextual knowledge and lived experiences that may be unknown to you. Engaging in dialogue can only do us academics good in trying to make transparent our research and practise.

 

Public engagement can bring your research back to real individuals, societies and, communities and has the potential to introduce the much-needed human into non-human-data research.

  

Written by Carol Porteous from ADRC-Scotland and published on the ADRN blog under Creative Commons license CC BY-NC-SA 4.0

Published on 20 September 2016


Page last updated: 22/05/2017