UK Biobank / Generation Scotland
Can you tell us about your background?
My undergraduate degree is in History from Wake Forest University in the USA and my Masters’ degree, also in History, was at Tufts University in Massachusetts. My thesis focused on midwifery and witchcraft in early modern Europe. I then fell in to jobs in the sciences almost by accident, I started off as an administrator on a nursing-led study (so was led by women) looking at African American attitudes towards the health service in the US. That led to working at a small clinical research organisation in America. Due to my husband’s work, we moved to Australia and I started working at a small biotechnology consultancy.
My undergraduate and Masters’ degrees required a great deal of research, so this has made me a very good researcher, even though my jobs have been outside of history.
My husband then got a job at the University of Edinburgh so I had to start all over again! That was challenging because the UK system is more closed off than Australia or the USA. They look at your degree more than your work experience – I have work experience in data analysis, data management. I actually struggled to find a job for many months. I then applied for a clinical trial coordinator role at the department for neurosciences; it was maternity leave cover. I got the job and it was only a year-long contract but my foot was in the door. As usual at the University of Edinburgh, if you prove you’re good enough then doors will open. I then became audit coordinator for the Scottish Stroke Care Audit and ended up managing that for ten years. I then moved on to the UK Biobank and I’ve been working here since 2012. Now, I’m the programme manager for all of UK Biobank’s data linkage. I don’t work closely with data in that job but I get the data for everyone else to work with.
What does a typical day look like for you?
Lots of emails and teleconferences because UK Biobank is quite a distributed organisation – we have offices in Stockport, Edinburgh, and the data is held in Oxford.
I manage a mix of related projects. There’s the data linkage work that takes up a lot of my time, such as filling out data linkage applications or renewing an agreement for shared data. I might spend time on the phone going over contracts with our UK Biobank lawyer.
There are projects around coding – when you visit the hospital, it’s coded and we don’t know how accurate those codes are. We uniquely have access to GP data and that coding is even more complex. Are working within NHS Lothian to look at these codes and we’re hoping to download this data but we’re currently trying to find an appropriate place to put it as it contains a lot of sensitive data, either a national ‘safe haven’ or somewhere in the NHS we can store it. I spend time in meetings discussing these things.
There’s no “typical day”; it all depends on what projects raise more urgent issues. I have several different hats.
What project excites you the most at the moment?
I wouldn’t say it’s the most exciting, but I would say it’s the most challenging (laughs). It could potentially have the most impact. We’re trying to get access to GP data for all the UK Biobank participants for England, Scotland and Wales. We tried to do it on an opt-out basis but for a variety of reasons we had to shift to having GP practices opt-in. We can’t extract data until the practice says ‘yes you can extract this data’ so it’s a hugely challenging project. We’re focused on England at the moment and there are over 500,000 participants to link across England, Scotland and Wales. We work with GP system suppliers and the most challenging thing is GDPR. Practices have a poor understanding of GDPR and understandably, are worried about a lot of things and about being fined for inappropriate use of data. This process is all authorised at senior management level but still practices are very hesitant. It’s been an endless battle so we’re now doing a mass mailing and then we’ll follow-up on that, to get them to actually tick the box on the website.
Do you wish you could work more with the data itself?
Well, I was never formally trained in data science (laughs) – and here I am! I have done some reports but mostly, I don’t work with raw data.
To be honest, I wish there were ways I could change national policy – that’s somewhere where I wish I could have more impact, to advise national bodies. A lot of barriers we face are around policy restricting our research and data linkage.
UK Biobank is very well supported but I really struggle with data linkage around health data – and if I struggle to get hold of it, what do other people face on smaller projects? It can be almost impossible. Research is seen as secondary in the NHS as obviously their primary purpose is clinical care. We could make it work for both, I believe.
How have you found working with data in three different countries, and as a woman?
I’ve found in the US that there is greater flexibility to move in different directions. My sense in the UK is that it is more rigid – even the ways you’re asked to fill in applications, being asked for the tests you did in high school! So if you don’t make the right decisions at 15, you’ll have some doors closed for you later. There is a huge difference between the US and UK. In Australia, I didn’t go on a massive job hunt, I got one job and was there for just two years in a small company, so I didn’t get a huge feel for the culture.
One thing I’d like to say is that with the NHS, I thought there would be more standardisation! You know, in the US, there are many different and privatised systems so it is more patch-work. However, the NHS is quite fragmented too, which is interesting. I would say though, that I have been supported as a woman in the UK, for example when I had my child I felt well supported.
Working with Cathie Sudlow at the UK Biobank is inspiring, and we have a lot of women on our team. It’s not female-dominated, as we have quite a few men on our team, but it’s often the case that women are the minority in external meetings which is not the case with internal meetings and the difference can be quite stark.
However, working for the university has been good. I have felt supported, particularly with working flexibly. I don’t work full-time and I work Fridays at home.
What do you think of the state of gender equality in your field?
In terms of the field, I deal with more men than anyone else, particularly senior people in the NHS. However the university is different, such as the Usher Institute, because there’s greater flexibility. My sense is that universities pay less but provide more flexibility so you find that many colleagues are there because they prioritise flexible hours over pay. One thing about Edinburgh that is just so crazy is that the children have Friday afternoons off school in Edinburgh. That massively impacts women’s working patterns and ability to work full-time.
This is very interesting – often there are talks at the University of Edinburgh on a Friday afternoon and women miss out because of picking up the children.
Yes. In most places I’ve worked, a lot of women are part-time and there’s loads to unpack there. My husband is an academic and his department has a lot of couples and they have to be careful because one of them has to go and pick up the children! (laughs) Often they alternate but, yes, it can be difficult.
It’s much easier for me now because my ‘little one’ is 15! And I just have the one.
I would say that having bosses and colleagues who have children is better, as they’re familiar with the sacrifices and struggles.
What would you recommend to women and girls who’d like to go in to your work?
Look for ways to improve things and suggest them! My career really started to progress when I pro-actively shaped and asked for what I wanted.
For example, if I want something done but I don’t have the power to authorise it – I might draft the letter and send to the person who does have the power, to get the ball rolling. In my experience, taking that extra step makes a huge difference.
What are you proud of you in your work?
I’m proud of our achievements at UK Biobank despite the ups and downs. I’m proud that the people in my team are generally happy and if they leave, they progress and go upwards in the roles they move on to. They’re sad to leave, which is always a good thing!
I have been successful at what I do; I make a difference to research across the world, and I run a functional team that helps people learn and grow.
What has been the best opportunity in your career thus far?
I haven’t had a proper competitive job interview for a long time. I don’t know whether that’s a bad thing, but it’s because I got my foot in the door with a short-term contract job and proved myself. When other opportunities came along, I was then recommended.
Just recently, as the work with UK Biobank is coming to an end for me (due to the project leaving Edinburgh), I was lucky enough to have the opportunity on to start to work as operations manager for Generation Scotland. This is a wonderful new challenge for me as Generation Scotland has been funded to double the size of the cohort via online recruitment and postal sample collection. This poses new challenges for me and I am really excited to be joining the Generation Scotland team on this project.
What do you look forward to?
I hope we can move the attitude of GPs towards research, they’re scared and sceptical, and I hope to continue having the conversations with GPs that I do now with more positive outcomes. I hope we can also apply Natural Language Processing to the data, that would be big. You have to be persistent!
The dream is that research is valued more in the NHS.
What do you do when the working day is over?
I really love to cook, to read, and to explore Edinburgh. I’m vegan and so is my husband (seeing the culture change around veganism over the past 15 years has been fascinating). I’ve learned to make vegan sushi and I’ve done classes in Indian cooking – I love mastering new types of cuisines. I love cooking, it’s a great challenge.
I wasn’t ever trained in data science – here I am!