DNAdigest interviews Natalie Banner from Wellcome Trust
Dr Natalie Banner is a Policy Adviser at the Wellcome Trust; she will be speaking at the BioData World Congress in Hinxton 2-3 November 2017.
Could you please introduce yourself and tell us about your main activities and roles?
I’m Dr Natalie Banner, a Policy Adviser at the Wellcome Trust and part of the ‘Understanding Patient Data’ initiative. My work mostly involves developing policy to ensure that we can maximise the use and value from data collected through research involving people or through clinical care. We can only do this if the systems for collecting, managing and using data are secure, ethical, transparent and patients and the public can have confidence that their information will be protected and used for public benefit. I lead a stream of work on horizon scanning, looking at the way new data-driven technologies may use patient data for health care and research.
What are you going to talk about at the BioData World congress in November?
I will be on a panel speaking about the importance of listening to and engaging with patients when thinking about how to build a trustworthy system that protects data while allowing access for valuable research.
You are working on ethical use of health data for research. Could you explain in more detail what exactly you do and how your work shapes what happens to patients and their data in reality? What ‘scares’ you more – data being openly used and misused or data being carefully protected and not being used enough to benefit patients?
In terms of data, my work in the Wellcome Policy team focuses on the implementation of the EU General Data Protection Regulation and what this means for research. This includes, for example, liaising with Government on data protection legislation, and working with arm’s length bodies such as the Health Research Authority on guidance for researchers using personal data. With Understanding Patient Data we’ve developed a series of tools and resources to help support conversations about how patient health information is used. These are feeding into work on the language of data use by local level research initiatives, and the national patient data opt-out that is in development following the Caldicott Review. You can find out more about this at www.understandingpatientdata.org.uk
What this means for patients and their data in reality is that we’re seeking to raise the general levels of awareness to inform people about how patient data can be used for purposes beyond their individual care, to talk about the benefits but also things like risks, safeguards and why companies use this data. Our aim is to help people feel more informed and to understand what their choices are with regard to how data from their medical records could be used and why.
I think what ‘scares’ me most is continuing in a state of paralysis, where we are so risk averse that we don’t make good use of data for patient benefit but at the same time there are instances of poor governance because we haven’t worked out how best to properly manage the data and apply that across the system. I think the Information Commissioner said it best when talking about the recent Royal Free/ Deep Mind collaboration: it shouldn’t be a choice between privacy and innovation. You can have both, if you set up the right rules, you have meaningful transparency about data use and it’s clear how you’re protecting people’s legal rights. We have to move towards a more open conversation, more transparency and clear, comprehensive governance if we’re to make progress here.
What in your opinion needs to happen in order to realise the promises of precision medicine?
Two key things:
· Genuinely putting patients at the heart of research so that advances are person-centred, not technology-led.
· Better, more consistent and joined up data collection, combined with a cultural shift towards making more effective use of the data we are able to gather.
What would you advise to young scientists who are at the beginning of their career these days?
I am a philosopher by training but I think some similar lessons from my experience could apply to scientists. My main advice would be: be open to different ways of doing things and listening to people outside of your own sphere or specialism. There’s a great need for people who can understand different perspectives and build bridges between disciplines, between siloes, between academia, clinical practice, policy and industry.
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