Conversation #7 — Julie Dodd, Director of Digital Transformation and Communication, Parkinson’s UK

Talking to Julie was inspiring — not just because Parkinson’s UK is an example of an organisation working with CAST to bring about a huge change in the way it helps people with the condition, but also because of her work on The New Reality: her research project on how digital technology can have significant social impact through the non-profit sector. I’ve been getting interested in the Tech for Good movement for a while now, and this was a great opportunity to hear about it in action.


So, Julie, what do innovation, digital transformation and tech for good mean for you?

Let’s talk first about tech for good and digital transformation, because I use those interchangeably. What they mean for an organisation like Parkinson’s UK comes down to two things.

Internally, it means trying to find processes, tools and culture to help an organisation like Parkinson’s UK be as good as it possibly can be.

Externally, it’s about answering the more interesting question about how technology can help a specific group, in our case people affected by Parkinson’s.

I’m the director of digital transformation and communication which means being the person who tries to find new ways to do things better. I think that’s where you get the cross over with innovation. New ways of doing things are interesting, better ways of doing things are helpful, but the important bit is the crossover. That’s what the tech for good movement is about — asking whether there’s opportunities that we are missing: the technology world is evolving so fast that waiting to find out is no longer an option.

I’ve heard that from most of the people I’ve interviewed, that we can’t just sit back and see what happens next.

People who work in innovation roles and digital transformation roles do seem to have a very pronounced sense of urgency, maybe a bit over pronounced, but not by too much. We’ve spent time looking at what’s coming — and it’s exciting and terrifying in equal measure.

People generally think that it’s somewhere in the future that this cultural change starts to bite. But there have been a couple of transport-related things recently that made me recognise how much things have moved on even since I wrote The New Reality. I was walking through Victoria Station, as I do every day, and on the screen notice boards, which usually say things like “watch out in inclement weather because things are slippery” it said “Please be aware if you are playing Pokémon GO that there is a Pokémon on a track to which you do not have access”. So now we have public safety messages about people blundering onto railway tracks because they are playing augmented reality games.

Similarly, on the Tube, I noticed a tiny little yellow zigzag sign like the one that normally says “stay off the rails”. Instead it said “Please be careful not to drop your devices”. We now have public safety information that warns people that their technology addiction might lead them to harm on railways. That’s quite a shift.

I noticed when I was reading The New Reality that one of your recommendations was to call innovation something else. Why do you think people are afraid of the term?

Partly because it’s misused. The organisations who have been successful about talking about innovation tend not to be organisations who are focused on practical mundane things like mobility issues or social problems, so it feels a bit light weight: it feels interesting, but not necessarily really meaningful. We can’t afford for it to feel like an optional extra for companies who have the money.

There is also the IDEO effect, where it’s sexy. IDEO does phenomenal work from reinventing shopping trolleys to major health initiatives, but it’s all packaged up in a very glossy way, whereas innovation isn’t about special people and it’s not about fancy environments. I flip-flop about whether to use the word innovation or not. At work I talk about setting up a demonstration unit, or prototyping lab rather than an innovation space, people tend to react better — they might not fully understand it but they can see it being useful.

It does seem to be a term that’s covering rather too many things.

Absolutely, and there is a sense that all companies should innovate. You nailed it in the first Innnovation Conversation, when you said companies were worried about being disrupted by an Uber or Airbnb.

There is consensus that innovation might be the answer to that, but it lacks structure, it lacks real knowledge. It’s about following agile or lean processes. Those words are quite alienating to people and that’s not helping, which is a shame because those things are fundamental. It is possible to innovate in a traditional linear process but by the time you get to whatever the end product is, it might be wrong and you’ll have missed the boat.

So is it mainly about speed?

No it’s about pace not speed, that’s a very important difference. When I was at the BBC I was part of the team that created the original iPlayer. I worked on that for about four years on and off, but that was definitely an innovation project. We were trying to work out when, not just how, people would watch TV via the internet. We had a pretty strong hunch that they would but it took 4 years for people to be really ready.

And you were right.

Yes, we were right. We made an MVP (Minimum Viable Product — part of the Lean methodology — Ed.) for Roly Keating, the BBC Two channel controller at the time (he’s the chief executive of the British Library now). At the time he was convinced that BBC Two could be the first live broadcast online channel and that catch up and on demand would be a thing, so we made an MVP.

We tried it with people and they rejected it because the quality of the video wasn’t good enough to watch for long — this was at the time where YouTube was just emerging. Users were telling us that they hated missing The Apprentice, so we gave them all of The Apprentice on demand, but then they tried to watch it and hated it because it was bad quality. There are sometimes really innovative, new ways of doing things better that are not yet better, but will be when their time has come. In this case we had to wait for broadband speeds to catch up.

We did a fascinating bit of ethnography, sitting in people’s houses watching them interact with media and devices. It became really apparent that the other big problem was that the computer lived in the study. It didn’t live in a living environment where people wanted to relax and watch TV. It took products like beautiful iMacs and the popularisation of laptops to change that. Then all of a sudden the wacky things that we were coming up with in our little innovation lab — like people following recipes using their laptops — suddenly became real. And that, combined with the improvements in video quality, made a real experience, a real product. We needed to work fast to keep up with that change as when it finally happened — it happened really quickly.

It reminds me of the first story that got me thinking about innovation — my supervisor at university talked about the transistor radio. When the transistor radio came out there wasn’t a use for it. People would all sit around the lounge after dinner, listen to a nice classical music concert on a big radio set and then turn it off. It took pop music and teenagers to come along for transistor radio to have a use. Adding the right context to purpose as well as the right technology is important.

Yes. There is definitely something to be said for putting technology out there before you know who’s using it, or how people might use it. People use things in ways you would never imagine.

Take me back to your role at Parkinson’s UK: what does all this innovation technology cultivation mean for Parkinson’s UK specifically?

On the internal side, there is a lot of modernisation. It means changing the systems and tools and processes we use to get stuff done. Lots of that is pragmatic, sensible stuff, so I’m very lucky that I work with a Head of IT who’s really open to change. We just have to manage the budgetary constraints that exist because we are a charity. I’m also very lucky in that culturally it’s an organisation that doesn’t resist change. In fact it has won awards about organisational change, with a leadership that is very pro-change for the right reasons. That’s why we are still one of the only charities that has a role like mine at the top table.

The other side of my role, the bit that really does get me out of bed, is how can technology directly help people affected by Parkinson’s? That isn’t about being online. Yes, our website is crucial, it’s the way we reach most people with Parkinson’s, but there are other solutions that we are only just at the cusp of exploring: devices, wearables, apps that can help with the symptoms of Parkinson’s.

The BBC Two Big Life Fix documentary series recently featured a woman called Emma Lawton who’s a good friend and collaborator with the charity. She was the creative director at an agency and was diagnosed with Parkinson’s at 29 — she’s got quite a pronounced arm tremor. One of the things they looked at in The Big Life Fix was getting a Microsoft product designer to develop a gadget that looks like a watch that helps stabilise her hand so that she can draw.

There are other ideas that are already proven to help with some of the symptoms with Parkinson’s. Some people get freezing, where you just stop in the middle of whatever you’re doing. It’s incredibly frustrating and it’s particular to Parkinson’s. Strangely, if there are lines in front of the person when they freeze, they are able to carry on walking, so people are designing shoes that project a laser line as a walking signal.

Data is incredibly important. We’re partnering with a company called Global Kinetics, that created a device that clinicians and people with Parkinson’s can use to track how their Parkinson’s is affecting them over a period of time. Then you can use that data to adjust medication regimes. It’s early stages, but all the trials are pretty positive. The health service is now very interested in this type of thing, but haven’t got a framework for dealing with it, so I’m trying to work out what the role of an organisation like Parkinson’s UK is.

One of the other challenges is that people with Parkinson’s sometimes only get ten minutes with a consultant twice a year at best, and that’s not the most efficient way of working. There must be better ways of sharing data and information in the meantime. There’s an interesting pilot going on down in Plymouth, where they are giving people four appointments a year with a specialist Parkinson’s nurse, and then consulting appointments are triggered by data from a wearable device that flags when there is something that needs consultant involvement. Ultimately, if we can tie together the data that’s generated by these devices, we might learn enough about Parkinson’s to help us cure it. That’s the real end game for me.

I do also wonder whether one role for an organisation like Parkinson’s UK lies in being a safe space for patient data. We’re never going to be a big data analyst, but people trust us more to do things with aggregate patient data than they’ll trust a commercial company service.

I noticed you talk about people affected by Parkinson’s, presumably that also includes families or carers and so on?

Ultimately we want to effect change for people with Parkinson’s. We are very aware that the friends, family, carers, professionals around them have a significant responsibility for that too. So yes, it’s very much a connected picture.

How do you approach it internally? Is your approach to build an innovation culture to get everyone interested in innovation and working in innovation, or do you cherry pick people who are particularly enthusiastic?

It’s a combined approach: trying to normalise technology as much as possible by not talking about a lot of digital stuff as being innovation, just talking about it as just being normal, and continually pointing out the normality of this technology in people’s lives. People say to me, “I’m not very digital, I’m not very techy.” I say “Well let’s see. You set up this meeting with me via your online calendar, and we had this meeting via Skype for Business, which means you are very digital in comparison to people even a decade ago.”

Increasingly, people don’t need to worry about being very technical because there are incredible tools that have done all the hard work. If there is one thing I’m constantly saying it’s please don’t try and build it yourself — assume it already exists. The charity sector is still on that journey of building awareness and trust in tech.

One of the other things I’m doing is setting up a demonstrator unit. I’m trying not to call it an innovation lab! I’m bringing in a couple of prototypers to help us make things quickly, to test out our ideas and assumptions, and we’re kicking it off through the CAST Fuse program. We’re currently prototyping an idea about how technology can help people with Parkinson’s at point of diagnosis to get personalised tailored advice and support.

Charity culture is naturally cautious because it can’t just spend ten thousand pounds on something and hope for the best. That money was raised by people working really hard. So instead we’ll spend five hundred or a thousand pounds to create a model based that we think will work and involve people with Parkinson’s in using that model and talking to us about it. Then if it looks like it’s got legs we’ll put some investment in because we know that we’ll get a return there. The worst case scenario is that we generate 20 things that don’t go anywhere and one thing that was worth it.

I also want to ask you a little about how you came to be where you are. You’ve got a long background in digital obviously, but how did you decide to move into innovation?

I started my career properly at the BBC and was very lucky in terms of the year that I joined. It was in that web era where nobody really knew what they were doing but were just having a go, and the first thing I did was the Children In Need website, so my first BBC experience was a charity experience. There was no thought whatsoever that the website would do anything to raise any money, that’s what the TV show was for. So I spent a lot of time just making animations of Pudsey bear!

But then digital became a grown-up business. I learned about user experience, trained in user experience and qualitative research, became really exorcised about audiences being more important than anything else. You’re acutely aware when you are at the BBC about the licence fee and the value that’s being generated for that. It sparked something in my mind about public value and I started worrying about how you could use digital to create more public value. I reached a point where the BBC wasn’t really scratching that itch enough for me anymore. So I left and joined a small agency that specialised in working with charities — Public Zone (later just ‘Zone’).

I worked with about sixty or seventy charities in the time I was there, but also ended up working with commercial brands like Coca-Cola and Tesco. Those commercial brands were interesting but ultimately they reinforced that I personally can’t get excited about selling people stuff. I just don’t care. I don’t understand how anybody can bother to go to work for it.

So then you wrote The New Reality — can you tell me about that?

I had wanted to do something like The New Reality for a while. The seed of the idea had been lurking in my mind for a long time. I was lucky to work with some fantastic charity clients at Zone — all of whom were expressing the same challenges and issues, so I thought it would be useful if I captured them properly.

I cold called chief executives and senior executives to see what response I got. A lot of people just put me straight in touch with their head of digital. I already knew loads of them, and that wouldn’t have worked because largely we all think the same thing. I wanted to speak to the leadership, and that’s an area where I’m starting to see a big change: where the leadership for digital change is coming from. You just can’t lead innovation and change from the middle of an organisation. It has to be at the top table. I was struck by the contrast between the organisations who were up for the New Reality conversation and the ones that weren’t. It’s how I met the CEO of Parkinson’s UK — he was one of the few who wanted to have the conversation rather than fob me off to middle management.

I was also struck by the funder’s gap between the actual need and what funders were funding, so I talked a lot about that in the New Reality. I feel like it’s one area that’s changing, but not fast enough. Most funders don’t fundamentally understand investment in technology. Some think they do but they just want to fund some well meaning but ultimately shit app and the world doesn’t need any more shit apps. I’ve had to say very clearly that at Parkinson’s UK we are not in the business of making apps. Please don’t come to me and say you’ve got an app idea: I love that you’re enthusiastic about technology, but come back to me with a better answer. What we are doing is trying to build a framework for companies who are making great apps and devices to get them into the hands of people who need them. That’s a much better use of our time.

Ultimately The New Reality happened at the right time for me and the intended audience. I could never have guessed how successful it would be and how useful it would be. It did what it was intended do, to give people ammunition to build their own case for digital, to change a conversation they were having.

What are your biggest challenges in your role at the moment?

People assuming that technology is not for older people is my single biggest barrier. People say that Parkinson’s tends to affect older people, and older people aren’t really online, so why focus on technology? My response is that statistically that’s wrong for a start. When you look at last year’s Ofcom media usage reports you see that two thirds of people aged 65 to 75 are regularly online. You see that a third of people over 75 have a tablet. I also reject the idea of being 65 as being ‘old’. Of course the issue of digital exclusion is really important — but the role of technology is not just about whether you are online or you’re not. It’s about how organisations can help you through their use of technology too.

What has definitely proven to be true is how important it is to involve HR and and your facilities people. I can’t set up the lab at my place without facilities people helping me (in our case by knocking down a wall and putting a glass one in instead plus installing whole bunch of new data points). You just can’t do this stuff without them. You can’t do without HR because you can say you want to employ more digital people and grow digital skillsets, but unless those processes are facilitating that, it’s just not going to happen. There needs to be a broadening of the mindset of who is responsible for doing things in new ways better — it really isn’t the domain of tech people alone.

My other big challenge is just sheer number of things to do. It’s phenomenal. Tackling the external and internal problems, looking at the emerging technology market, dealing with data issues, working out what the future looks like, and we haven’t even talked about the future of digital fundraising or engagement. Looking at the cultural and process changes we need to make, it is so much to ask from an organisation that’s already busy doing a lot of other things. But it has to be done. I find it hard to manage my own expectations of what’s achievable by when, and not to push people beyond what’s reasonable.

I find the whole field of technology-driven innovation very energising but I also worry about it. I worry that we won’t get there in time for people. Every person we are not helping now is somebody we are failing, and that’s quite an intense feeling.


These articles are supported by idea management platform Solverboard. I work with Solverboard as their Head of Innovation Practice, and they have kindly agreed to support this side project of mine. Do check out their suite of idea management tools for businesses of any size, their public open innovation platform Solverboard Open, or their extremely well-written blog ;-)

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