FLIER participant Dr Paul Wicks recently became an independent consultant in digital health, following 13 years working at PatientsLikeMe, an online patient network research platform.
I trained as a neuropsychologist and specialised in amyotrophic lateral sclerosis or ALS, also known as motor neurone disease. My work involved going out and seeing patients in their homes and doing psychological tests on them to understand how their brains might be changing as well as their bodies.
At the same time, I also volunteered to take on a small website called BUILD UK that was being run out of King’s College Hospital for people living with ALS. I was doing that during my evenings and weekends for a long time, just voluntarily, and I got a lot out of it.
I came across PatientsLikeMe when it had only just been launched as a pilot and I was really impressed. It was founded by a family affected by ALS and I emailed the founders to say: “This is really powerful.” They saw what I’d been doing for the last few years and said: “We need someone like you to interact with patients, and by the way, we’ll even pay you.”
I started doing that in my evenings and weekends as well. Then I got more involved and they asked if I’d like to move to America. So, in 2008, my partner and I quit our jobs, we got married, and moved to America.
I helped create the R&D team that built the site and made sure the data collected on the site was valid for research purposes. It grew and grew; I was employee number six and we got up to 200 at our largest. We specialised in chronic conditions for adults living with life-changing illnesses like lupus, multiple sclerosis, and mood disorders. Patients share their experiences with each other and, in the process, generate data for research that can benefit more patients.
The appeal of the FLIER programme was that I had an ocean-boiling challenge ahead of me which was to build on the existing platform by systematically mapping and quantifying all of human phenotype. This includes everything from genetics through all that we’re exposed to as we grow up, for example, did you grow up on a farm, did you smoke, were your parents educated?
So, I thought it would be extremely helpful to have some mentors and coaches, but also to do things like placements at NICE and NHS digital so I could understand how health systems value this type of real world data.
On the programme, we’ve done a lot of personality assessments and the feedback we got was very helpful. I realised that my most disrupting elements are just my strengths magnified. I can be very verbal and creative and that’s a great strength. But if I’m feeling grumpy, I can be very verbal and creative in my complaining, and that’s not great for anyone! It’s the same thing in a different context.
I’m really excited about the second FLIER cohort forming and how we might all interact. Seventeen of us is a good start, 36 would be better. With 50 to 100 people, I think we actually could boil the ocean if we put our minds to it.
Although I’m not at PatientsLikeMe anymore, I want to maintain the ambition of what I set out to do, despite not having the platform and the resources that I did.
FLIER has reminded me of when I was a child in the doctor’s office with my mum, who had very severe arthritis her entire life. I remember the doctors didn’t seem that helpful and actually, kind of patronising. She’d be feeling terrible and they’d be saying, great news you’re in remission. She’d be saying: “But I’m crying in pain when I walk.” But they’d tell her the test results were all normal. As any child seeing their parent in pain would, I felt frustrated to do something about it.
I would like the experience of every person that gets sick to be informed by everybody who has walked in their shoes before them, and for their experience to inform the experience of everyone who comes subsequently.
I know that’s not happening, but with digital tools it can do one day. For instance, every time a Tesla crashes, every other Tesla gets smarter. Every time there’s a traffic jam, your phone tells all the other phones, there’s a traffic jam here. But when you fall and break your hip on a hill somewhere because it’s icy, does your phone tell the council to salt that road? No. I want to live in a world where things like that happen continuously so we can concentrate on bigger things.
Dr Paul Wicks is a participant in Round 1 of the Academy of Medical Sciences’ FLIER Programme, a unique programme that will develop leaders of the future who can create collaborations across academia, industry, the NHS and government to drive innovation.
The FLIER Programme is generously supported by the Dennis and Mireille Gillings Foundation and the Government Department of Business, Energy and Industrial Strategy ‘Investment in Research Talent’ fund. If you would like to support the work of the Academy to develop talented researchers, visit our Supporters page.
