Shaun Le Geyt (CIO at Parkinson's) kindly spoke to Collingwood's Justin Carpenter, Senior Executive Consultant - Medical & Healthcare, about his journey with data & AI at Parkinson’s and the challenges he and his team have faced over the last few years.
Here is what they discussed;
Justin: When you embarked on the data journey at Parkinson's UK, what outcomes were you expecting in terms of improving the lives of your service users and how has that evolved over time?
Shaun: Like many organisations our data was held in silos with mostly manual data extraction, transformation and loading processes. There are many different symptoms of Parkinson's disease so everyone's experience is different so we recognised the need for providing more of a personalised service to better support people with Parkinson's, their families and carers. People may interact with us in many different ways, for example, they might have Parkinson's, be a fund-raiser, volunteer or carer or could be all of these.
The initial outcome that we were looking for was to provide a single constituent view to support improvements in our services and also to increase revenue from fund raising activities. We developed an AI strategy this year, that was something that hadn’t been considered when we started on our data journey. We have subscribed to a service that uses machine learning to optimise our fundraising campaigns and are expecting a 10-20% net return per campaign from this. In response to the Covid-19 pandemic we also used another AI solution that uses Comparative Linguistics to help us understand the topics and themes that our communities were discussing on our forums, helpline and on social media groups. These changed regularly in response to changes to the rules made by the Government so we were able to identify specific themes that were important such as physiotherapy and remote support.
Justin: How did you decide on the technology to invest in to deliver the strategy and what did you learn?
Shaun: To deliver our single constituent view we needed a data warehouse and better tools to move data around and to transform it. From the early discovery work of more established platforms and tools it was clear that these would require significant upskilling of the team but also the addition of new technical roles to look after the data infrastructure and to develop a data warehouse.
A key part of my strategy is to build partnerships rather than traditional customer / supplier relationships, so it wasn’t just about the technology. To work with us you have to understand, and be passionate about, how your technology or service might improve the lives of people with Parkinson’s, their families and carers. We have learned that it takes time to build these partnerships but also to be open and honest if things are not working out how you expected.
Justin: With a technical domain that is very new to Parkinson's UK how much of a challenge has it been to develop the team so that it has the right competencies to deliver your strategy?
Shaun: This has been a very challenging two years for the team as prior to the transformation work starting they were responsible for the core CRM platform only. As well as learning new technical skills they have had to adapt to new agile ways of working during a period of significant change across the organisation. Earlier this year we also created a central analytics and insight team to raise the profile of data and analysis as part of my existing data and technology team.
In the last two years Parkinson's UK has implemented a new case management solution, replaced our email marketing platform, migrated to G Suite, rolled out a new consent solution and implemented a new events platform. I am in awe of my team and how well they have performed during this transformation.
As a charity we have limited resources and as an early adopter of much of the technology we are unable to compete on salaries with commercial organisations. It was always my preference though to upskill the team and provide opportunities for development, as the team has transformed, we have identified new roles and the structure and capability needs will continue to evolve. When we do have vacancies we know we can’t compete with other organisations but we have a technology stack that most companies would envy, a talented team and are contributing to improving the lives of everybody affected by Parkinson’s and finding a cure.
Justin: Forging new ground is always difficult, how did you estimate delivery milestones, manage expectations with the key stakeholders? What were their expectations in terms of timelines and outcomes?
Shaun: It has taken some time to find the right approach, when we tried to present this as a five year plan I think we terrified our executive leadership team with the complexity and cost. We are continuing to develop our ‘firm foundations’ strategy to improve our data architecture in an agile way where we deliver smaller pieces of work. This approach enables us to highlight the challenges we have, show the improvements being made and helps keep the team motivated. We work on the basis that we still have much to discover about our data and that there will never be a steady state.
We are still resetting expectations, ensuring that we have full engagement with key stakeholders so that needs of the organisation are fully understood. Our Head of Data Strategy has done an incredible job of bringing data to life and making it relatable. I’m fortunate also to have recently recruited a Head of Data Architecture to improve our data engineering and data architecture. To manage expectations requires effective communication that avoids jargon and clearly explains the link between what we are doing and how this will benefit people affected by Parkinson’s.
Intro to Parkinson's UK
Your mum, son or friend. Anyone can get Parkinson’s, young or old. Every hour, two more people are diagnosed.
Parkinson’s is what happens when the brain cells that make dopamine start to die. There are over 40 symptoms, from tremor and pain to anxiety. Some are treatable, but the drugs can have serious side effects. It gets worse over time and there’s no cure. Yet.
But we know we’re close to major breakthroughs. By funding the right research into the most promising treatments, we get closer to a cure every day.
Until then, we're here for everyone affected by Parkinson’s. Fighting for fair treatment and better services. Making everyone see its real impact.