Meet Julie Dodd, director of digital transformation at Parkinson’s UK
Author: Almaz OhenePublished: 8 March 2017
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Appointed the first ever director of digital transformation and communication at Parkinson’s UK last year, Julie Dodd has a track record of delivering digital projects in the charity sector and is a champion of using technology to do social good. The former BBC creative director – who was part of the team behind the BBC iPlayer online streaming service – is now responsible for harnessing digital technology to help people with Parkinson’s stay in control of their condition. In this exclusive interview, Julie tells us about the powerful potential of digital, women in tech and why she’s confident that in the next decade, the day-to-day lives of people with Parkinson’s will be much easier.
We’re a little over a month away from World Parkinson’s Day, which is when the #UniteForParkinsons social media campaign is taking place. Tell us a bit about the campaign and how Parkinson’s UK are getting involved.
It’s part of an initiative that we are backing with the European Parkinson’s Disease Association (EPDA) because 11 April this year is the 200th anniversary of when Dr James Parkinson first published his essay describing ‘the Shaking Palsy’ – the condition we now know as Parkinson’s. We want people to come together and really understand that this is an important moment, as it’s now been around 50 years since any ‘new’ medication was developed – what we need is more funding to make a breakthrough. We are going to be doing a lot to try to secure more funding for clinical research. Hopefully people will be hearing lots about this in the UK during Parkinson’s Awareness Week, which is 10–16 April 2017.
What are the best ways to include those in the Parkinson’s community who would not consider themselves digitally savvy?
It’s such an important question. A lot of people will say, “oh you’re doing digital but most people who develop Parkinson’s are old people”. When people talk about older people they could be talking about people who are around 60 and yet some are talking about people who are 95. If you look at the younger end of that spectrum you are looking at a highly digital group of people who are buying and communicating online. A lot of the time people say that they are not very technological, but then you see them using WhatsApp and Skype and you think they have just forgotten what it was like before.
The generation who are retiring now have all worked in places that are computerised. They are all more digitally savvy than we think. But we have to be sure that we are not leaving people behind. We’re still as committed to our face-to-face and other offline services as ever – like the helpline and our Parkinson’s local adviser service. We want to do some digital inclusion work for our volunteers at local branches so that they can feel confident using simple digital tools to help running their own groups.
“I feel confident about the role of technology in better treatments, and better control of Parkinson’s in the future”
How important is digital communications for the Parkinson’s community?
We know that lots of our local branches have set up their own Facebook and WhatsApp groups and are managing their own digital communication effectively. There are also digital communication groups that have emerged through people who are not able to engage – or don’t want to engage – with our traditional branch network. People who are geographically isolated or who find travelling around very difficult are big users of digital communications.
What is the most significant change we have seen in the Parkinson’s digital landscape in recent times?
I think it’s the rapid rate in which new devices, apps and gadgets are arriving –particularly ones that are specifically made for Parkinson’s. It’s really heartening in a role like mine, to speak to my local advisers everyday who will mention apps that I haven’t heard of! It’s moving so rapidly and there is a clear role for us to help people access that.
The clinical community is starting to really engage with technology too. They are being really innovative about the way they provide their services. Another small but really important example is when doctors used to use pagers in the NHS. Now they use their own personal devices to share information with each other via WhatsApp.
100 for Parkinson’s app by uMotif
How do you see the digital landscape changing in the next few years?
You can never predict this, but I think we are going to see a move towards a more conversational way of interacting. By this I mean we are going to see a move away from screen-based technology in the next three to five years.
“We are going to see a move away from screen-based technology in the next three to five years”
What’s your advice to other women out there who might be interested in tech and innovation, a typically male-dominated area?
I would really challenge the statement that it’s a male-dominated sphere; I know that was maybe true 10 years ago but not now. I know loads of fantastic, strong female leaders in the charity sector. Of course there are some organisations where there is still a bit of a misogynistic culture but I really don’t think the charity sector is as guilty of that as other sectors.
What do you enjoy most about your role at Parkinson’s UK?
The variety! Half my role is fairly traditional – communications, marketing and content. The other half of my role is around digital transformation. In the space of just one day I could be working with front-line staff such as local advisers, looking at how technology can be more efficient. The next hour I could be working with our brand team looking at brand development and new approaches to content marketing. It is a really enjoyable, varied role.
There are still only relatively few charities that have this kind of structure, with someone leading digital right from the top. There’ s quite a bit of pressure but I love it! And no one expects more of me, than me.
What are your main targets within Parkinson’s UK for 2017?
This year, we’re focusing a lot this year on ‘capacity building’ which doesn’t sound very ‘sexy’ but this means investing in our infrastructure, looking at how we can handle data better, helping our staff feel more digitally confident; as well as making them feel more confident leading their own digital planning.
There is a more exciting layer on top of that which is to seek opportunities for people with Parkinson’s – there are big opportunities to enhance our service through digital. We’re engaging with the emerging health technology market to understand how devices, apps and gadgets can be used to support people affected by Parkinson’s.
“No one expects more of me, than me”
How can Parkinson’s causes continue to carve out space the mainstream media?
We come second to cancer charities at the moment but I think that we’re increasingly being recognised in the mainstream. I think the real challenge here is working at helping people understand Parkinson’s better, as there’s not a standardised pathway because people progress in different ways and at different rates. I think it is more about how we use the media to help people understand that it isn’t just about tremors.
What digital transformation products are you’re working on?
We’re looking closely at how to use digital channels to deliver personalised information and support to people with Parkinson’s, particularly from when they are first diagnosed. We’re also exploring at how we can offer support to those with Parkinson’s by considering simple things like how we structure our website. We’re creating a framework to provide quality guidance for other devices and apps that are already out there.
Is there any new Parkinson’s technology that you’re particularly excited about – what’s the best use of tech you’ve seen so far in the Parkinson’s world?
There is a lot of really interesting stuff out there. We are interested in the landscape as a whole rather than any particular device and we are working on how best to make that landscape available to people, rather than endorsing particular devices.
But we’ve been partnering with Global Kinetics who have developed a device called the Parkinson’s KinetiGraph (PKG) which is used by both clinicians and the person with Parkinson’s to assess how well the medication is working. Parkinson’s is quite unique as a condition because it varies massively from person to person. Finding the right level and frequency of medication can be simply trial and error a lot of the time. It often means that people aren’t on the optimum levels or delivery methods for their medication. The PKG could have a huge impact on this.
We’ve also been working with the team behind 100 for Parkinson’s – a research study that uses an app to track people’s day-to-day experience of Parkinson’s. I believe this kind of data capture will lead us to a much better understanding of Parkinson’s – and hopefully to some breakthroughs as a result.
There are lots of other fascinating devices and apps out there like the ‘GyroGlove’ that can stabilise hand movements, Dopa Solutions who’ve created the ergonomic ‘ARC’ pen that helps with handwriting, and the Beats Medical app that aims to help mobility issues.
An early sketch of GyroGlove
What is the best way to educate the general public about Parkinson’s?
This is a question we are always trying to answer and I wish I had the magic wand. I think that we need to talk about different specifics within Parkinson’s, get people talking about all the non-motor symptoms and, of course, we really need to challenge some of the myths surrounding the condition.
What is your ultimate goal for Parkinson’s UK and how long will it take for the charity to get there?
Our ultimate goal is to no longer be needed and to shut down! We want to have found a cure through clinical research and we want to be able to provide better treatment to increase the quality of life for people with Parkinson’s. We want them to feel empowered to be in control of their Parkinson’s. When we have achieved that, we won’t be needed.
‘How far away from that are we?’ is the real question. We have an innovative approach to clinical research as we’re pulling together large pharmaceutical companies, research institutions and universities to encourage collaboration and a focus on Parkinson’s that’s rarely happened before.
“Our ultimate goal is to no longer be needed and to shut down!”
You can never say exactly when a cure is going to turn up because clinical research does not work like that. What I feel confident about is the role of technology in better treatments, and better control of Parkinson’s in the next 10 years. The industry is at the early stages of developing devices that help control tremors or help improve the volume of speech. But they are developing really rapidly, and I am confident that in the next five to 10 years, the day-to-day lives of people with Parkinson’s will be much easier.
Julie Dodd’s CV
Julie, 38, was appointed the director of digital transformation and communication at Parkinson’s UK in July 2016 and her role includes overseeing how the charity communicates with people affected by Parkinson’s and the role of technology in improving their lives.
2000: Appointed creative director at the BBC – Julie was one of the two people to design the original face of the BBC iPlayer for its launch in 2007.
2009: Joins digital strategy agency Public Zone, as head of user experience, later becoming user experience design director.
2013: Becomes creative director at digital strategy agency Zone.
2015: Writes study ‘The New Reality’, which sought to discover how digital technology will deliver the “next step-change in social impact”.
2016: Appointed director of digital transformation and communication at Parkinson’s UK and also became a trustee at the youth mental health charity, YoungMinds.
Parkinson’s disease genes activated in zebrafish exposed to aluminium
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