Transformation at Parkinson’s UK:

5 Lessons from what we’ve achieved - part one

Julie Dodd
May 2 · 8 min read
A fortune cookie saying “A plan you have been working on is beginning to take shape” Img credit: Elena Koycheva — Unsplash
A fortune cookie saying “A plan you have been working on is beginning to take shape” Img credit: Elena Koycheva — Unsplash

COVID-19 has created a spike in demand for charity services at the same time as we face a major fundraising crisis. There has never been a more important moment to learn how to adapt.

We began our transformation journey in 2016, driven by the need to deliver more impact for people with Parkinson’s. Although we talked about ‘digital transformation’ in the beginning, this has been about much more than technology so we’ve dropped the ‘d’ word. We’ve made lasting change happen by shifting ways of working, taking a hard look at our culture, remodelling our infrastructure and rethinking how we use data.

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As a result, we’re working through lockdown with minimal interruption. Our culture, infrastructure and communication channels were already optimised for remote working. We were well placed to adapt our service delivery and engagement models at pace, making sure we’re focused on the immediate needs of our community.

Resilience depends on reflection and adaptation at pace. The COVID-19 pandemic provoked many of us to reflect on our work. This blog is a result of my own reflections. Sharing lessons from the field is how we best support each other.

Parkinson’s UK’s transformation success is rooted in 5 lessons:

  1. Focus on the fundamentals before doing the shiny stuff

If your organisation hasn’t got good cultural and technological foundations then transformation efforts will struggle. Our success has been built on:

  • Shifting skillsets. We’ve needed new skills including data strategists, engineers, analysts, content creators, product managers, service designers, and more. We developed some of these skills with existing staff - for example partnering with FutureGov to develop service design capabilities. But sometimes you need to bite the bullet and replace a familiar role with something new.
  • Stable and secure cloud-based systems. We’ve moved 90% of our infrastructure onto the cloud and pursued an ambitious security agenda.
  • Effective internal communication including tools and policies that facilitate flexible working.
  • A solid product management approach to our digital portfolio. We needed to replatform our website, our donation funnel, our membership process, our online shop and online community before we could develop any new online services.
  • Recruitment processes that promote a transformation culture. A small example has been job ads including videos of leaders talking about the importance of transformation. It attracts people who want to be part of the change. We also include this in every role description: ‘You must be comfortable operating in a modern workplace, including using digital tools to work collaboratively and productively’.
  • A measurement framework with clear goals and room for adaptation. We ditched traditional KPIs and adopted OKRs instead. We’re mid rollout but you can see my current OKRs as an example here.

In truth, doing a bit of shiny stuff can be useful. Throw a couple of small, glossy initiatives into the mix. It will keep people interested in the wider transformation programme. And funders too. We transformed a tired meeting room into an ‘innovation lab’ (read: glass box with writable walls and colourful furniture) and set up design sprints for people to try out different ways of working. Getting people comfortable with the business of transformation is easier when there are visual cues reinforcing it.

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2. Transformative leadership — go for strength in depth

If your organisation’s leadership aren’t dedicated to transformation there won’t be any. Much has been made of having an executive level transformation post in place. Yes, it is critical but any organisation that has only one senior change or digital leader will find the journey tough going.

At Parkinson’s UK we have invested in strength in depth in modern era leadership, and embedded them across the organisation. Our senior roles include Product Management and Agile Delivery, forward-looking HR, Service design, Data Strategy, Operational Model Experts, Digital Engagement, and a CIO (rather than a classic sector ‘Head of IT’).

Why is this so important? If your organisation isn’t populated with people who are experienced in particular new ways of doing things, it will be impossible to change. Most organisations can’t afford to bring in a new set of leaders overnight. We were no different. Instead we took every opportunity to populate spots left by leavers with differently skilled leaders, and developed business cases for others. Having decentralised change-maker leaders embedded across the organisation is a critical factor for lasting success.

3. Work out what you don’t know and plug any big gaps in your data

Identify any major gaps in your data early or do not pass Go! If you can’t evidence the need for change, the lure of “but we’ve always done it like this” will be strong.

Our biggest knowledge gap was around frontline services. Our 100+ advisers got regular positive feedback on an individual level, but because they operated largely offline it was difficult to assess trends in service demand, or know how many people we were serving.

Plugging this gap was no small feat and wasn’t cheap. We equipped our advice workers with mobile devices to capture client data during appointments. We built a case management system on Salesforce and trained 120 staff to use it. And then we beefed up our data analysis team to turn this wealth of data into usable insight.

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Within a few months, it generated startling insight. Our operating model only met 20–30% of our community’s needs. And with the prevalence of Parkinson’s growing (20% more people getting diagnosed in the next 6 years), we would struggle to maintain this level of service.

4. Transformation takes time. Communicate regularly to fuel staying power

Your organisation’s energy levels for transformation will wax and wane. Think of quick win changes as refuelling stops. Use creative communication to create the momentum necessary for the years-not-months that real transformation takes. Those internal communication foundations mentioned in lesson 1 keep people on the journey with you. Tell the positive stories: early on we put together this video to help people get excited about the technological elements of our transformation.

Tell stories of failures too: our regular ‘Show, share and ask’ sessions highlight what went wrong as well as what went right. That transparency builds trust.

Stick at it. Implement a measurement framework to demonstrate progress and use each assessment as an opportunity to communicate the need for transformation. We use an organisational maturity model adapted from Digital Leadership Ltd’s version. We are now seeing the fruits of our transformational work pay off in a major way (see lesson 5) — but it took 3 and half years.

And then, when you’re ready…

5. Identify a pressing problem and be audacious in your approach to solving it

Take everything you’ve learnt on the transformation journey and apply it to something that really matters.

The most obvious evidence of our progress is our service transformation programme ‘Parkinson’s Connect’. Through insight work on current services (see lesson 3) we could see potential to scale our offer. But only by busting silos and taking a fundamentally new approach.

We paired advice workers and people from our healthcare team with service designers, data analysts, product managers, content designers and developers. We set them up in a service-design led Agile team with support from expert partners. We set them the brief: how can we scale our services, and offer a personalised experience that helps people with Parkinson’s navigate their journey?

We’re a year in. The first 6 months of Discovery research and prototyping sprints gave us a blueprint for how support can be delivered most effectively. The next 6 months of Alpha test-and-learn experiments have delivered meaningful change, both within the NHS and in our own operating model.

We now have three live NHS clinics referring people to Parkinson’s UK through an online portal used by clinicians. Delivering change in the NHS within 12 months is normally unthinkable, so having three sites and a queue of others (after the current healthcare emergency subsides) is something we’re incredibly proud of.

From the initial referral, we’re also delivering an ongoing feed of information on how to manage Parkinson’s well and plan ahead, and we’ve developed a better model for triaging people to our advisers.

Transformation at Parkinson’s UK has not been easy. We underestimated how much work certain things would be (fixing our data infrastructure is still a major challenge), and at times we struggled to bring our people on the journey with us. We haven’t always got it right. There are many things I look back on and think we could have done them differently. I’ve heard myself advise others “don’t try to boil the ocean”, yet in our ambition to deliver more impact for people affected by Parkinson’s, we’ve repeatedly tried to do too many things at once.

There are also aspects of our transformation which I’d regretted, but now see differently through the lens of the Coronavirus. Right now our service transformation team has pivoted to design interventions that tackle the COVID-19 based needs (read more about here). I’m also hugely relieved that we made the move to G suite last year. At the time I thought we were rushing people into it too fast, but I’ve had many messages of gratitude from formerly skeptical colleagues saying how invaluable it’s been this past month.

There are many other lessons we’ve learnt along the way, and many areas where we’re still learning. I’m incredibly proud of what our transformation is delivering for people with Parkinson’s, and it gives me the inspiration to look ahead to what transformation can deliver for people with Parkinson’s next.

If you found this useful, there will be a part two to this blog — arriving soon — looking at the lessons from the pandemic and how that’s shaping what transformation needs to deliver next for charities.

Julie Dodd is the Director of Transformation at Parkinson’s UK.

Parkinson’s UK is the leading non-profit in Europe focused on finding a cure for Parkinson’s and helping those affected by the condition to live as well as possible.

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