by Tom Henderson, Data Analyst with Parkinson’s UK
At Parkinson’s UK, we have a challenge ahead of us, and we are using digital and data to address it.
More than 145,000 people in the UK are living with Parkinson’s, a progressive neurological condition that turns lives upside down, leaving people’s futures full of uncertainty. But Parkinson’s doesn’t just affect the person with the diagnosis. In fact, we estimate that around 1 million people in the UK are affected by Parkinson’s. This could be a family member, friend, or work colleague.
As Parkinson’s is the fastest-growing neurological condition in the world, we expect these numbers to increase by a huge 20% within the next five years.
One of the big challenges is that our direct services, such as our national helpline, local advisers, and online forum are unable to scale to meet this demand in their current form. We’ve been providing expert support to people with Parkinson’s for over 50 years and are currently reaching an estimated 50,000 people a year across the UK. However, we know there are many more people out there who could benefit from our information and support.
Alongside this, we know the world is changing. User expectations and behaviours are shifting, and people are looking for support in different ways. Any new services will have to work just as well for people who are online and for those who aren’t.
This is where Parkinson’s Connect comes in
Parkinson’s Connect is the future of Parkinson’s support. It’s the right information and support, in the right way, at the right time. This service pathway will be personalised to the individual, whatever stage they’re at and whatever their connection to Parkinson’s. This starts with giving healthcare professionals the tools to refer people straight into Parkinson’s UK from diagnosis. From there, they can access personalised content online, or receive a phone call from one of our advisers when the time is right for them.
Our aim is to reach and engage 80% of newly diagnosed people with Parkinson’s (and/or their family, friends, and carers) by the end of 2024. To achieve this huge ambition, we wanted to make sure we set up this project in the right way – breaking down silos and enabling truly collaborative working.
We brought together a cross-functional team from across the organisation. We had a core service design team with experts in design, digital, data, content. People from our front line service delivery teams brought in their knowledge and expertise. Alongside this, we have a core operational model team – a group of senior consultants from across the charity that ensure everything we’re doing is feasible and scalable.
Using data to design the new service
The need for the new services we are designing comes from evidence and insights about the people we are trying to support and those delivering the services. We have combined things like website browsing data (from Google Analytics), survey responses and feedback, data from internal Customer Relationship Management systems (CRM) and in-depth user research and interviews.
However, we have many legacy systems at Parkinson’s UK that make this kind of data analysis difficult, often involving lots of data cleaning and combining. We are in the process of creating a new data architecture structure and a single customer view. For now, this means we often don’t have a clear picture of the people we want to support, and the ways in which they want to be engaged and supported.
An example from the pandemic of how we want the future to look
As lockdown began in the UK in 2020 there was a huge spike in calls to our helpline, and a surge in online activity across our social channels and online forum. People wanted to know how coronavirus and the need to stay at home would affect them. They were confused by the advice around self-isolation and social distancing.
We pulled together data from numerous sources across the charity to quickly get a better understanding of the priority of peoples’ needs at the time. One of the things that stood out was the need for more clarity on what lockdown meant for social care such as residential and nursing care, social care services, and funding for care homes. The chart below shows how the number of calls and emails to our adviser services around these topics more than doubled from March/April to May/June.
Once the need had been identified, we worked with teams across Parkinson’s UK to develop and release new content on our website, addressing social care and coronavirus.
Using Google Analytics, we monitored engagement data for the new information content, while also observing a drop in the number of calls and emails to our adviser services relating to social care.
Web browsing data generated further questions and opportunities. After analysing the data, we made changes to how users could access the social care content, in an effort to make it easier.
Small steps to help change the culture around data
We have been trialling a number of different ways to increase confidence and skills when working with data internally, including improving the transparency and accessibility of different data sources.
Once a week, the Parkinson’s Connect project team has a ‘data stand up’. This is a chance to share and discuss relevant observations and insights from the data collected through the new and existing services. It also gives us a chance to surface relevant analysis from across the rest of Parkinson’s UK.
We developed a dashboard using Google Data Studio, which presents the key headlines from the new services, including how many people have been referred from their health professional and whether those people have engaged with information content. This dashboard is used on a daily basis by the project team and is also available to everyone else across Parkinson’s UK. We have even built in a handy feedback form so that anyone can ask questions or make suggestions for edits.
Finally, we have begun facilitating monthly conversations with representatives from across the information and support service delivery teams to discuss ‘data’. We look at trends we are seeing (i.e. an increase in calls relating to health care services) and sense check these with the people and teams taking the phone calls. It also gives us a chance to put these observations into context by discussing why we might be seeing these patterns. Any important observations are then shared with a wider group of people from across the charity, who come together each month to shape insights about our different audiences and define actions as a result.
At the heart of everything we have been doing is a service design and agile approach. Ultimately, service design is about improving experiences for users. By working with people with Parkinson’s – and their family, friends, and carers – we can design and deliver services that better meet people’s needs, and this goes for data too. By working with the people who are inputting data and managing teams and services, we can build skills and confidence across the organisation.
Key learnings from Parkinson’s UK service transformation so far
- Using data from across the charity to improve our information and support services is service design. However, data alone can’t improve services.
- We need to work with service users to ensure the data we are collecting is helping us to understand where services are and aren’t working. Taking a service design approach, supported and informed by data, will make a difference to people.
- Data is key for continuous improvement of products and services. There is no ‘finished product’.
- Developing a culture of confidence and transparency around data is important for ensuring scalability and sustainability of the new services. By sharing data across teams and the whole of Parkinson’s UK, we can get a better understanding of the people we support, together.
We always value the chance to speak to others about our work or similar projects that may be happening. You can contact the Parkinson’s Connect project team directly at firstname.lastname@example.org
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