In the first of a series of articles introducing the three pillars of our new strategy, we speak to Parkinson’s Europe’s Strategic Director Amelia Hursey to find out more about our new approach to data and innovation.
She tells us how we’ll be approaching such a large – and important – project, and why this pillar is so key to driving positive change for people with Parkinson’s.
Parkinson’s Europe is committed to helping the Parkinson’s community access the highest standards of treatment, support and care. How will the Data & Innovation pillar support this vision?
“Put simply, the data out there will help us build stronger arguments that we can use to create advocacy campaigns. These will empower decision-makers to improve healthcare systems for people with Parkinson’s.
“We also know there are many technology organisations out there creating amazing new devices to help support people with Parkinson’s. We’d like to learn more about it, and share how that might also improve people’s lives.”
What will the work to define the impact of Parkinson’s in Europe involve?
“We firstly need to gather together the stakeholders who have this knowledge. We need to survey and understand what data is out there, and identify the gaps. This work will be guided by our stakeholders, especially people with Parkinson’s but also their partners and supporters, healthcare professionals and our industry partners.
“Parkinson’s UK has been doing a great job of trying to understand the impact of Parkinson’s in the UK, and there have been other initiatives across Europe. But we don’t have a full data picture. We need to be able to look at all sets of data and see how they combine to create that impact picture. Because unless we bring it together in a useful way, we can’t do anything with it.”
What types of data will Parkinson’s Europe focus on?
“Our data collection will be about understanding not just who is affected by Parkinson’s, but also the socioeconomic impact Parkinson’s has on countries and communities. Setting it in context. It’s not just the people affected directly, but the wider impact on their partners, families, employers and so on.
“So we will start by bringing together stakeholders and scoping what we need to do next. When we have the data, we can identify the gaps. Once the gaps are identified, for example, what do we do about those gaps? The community will need to decide.
“That is why it is part of a four-year strategy, which will be refined and improved over time. We are just at the start. So much is changing in the information world every day, we can’t set out our expectations too far in advance.
“But we will be strategically flexible and responsive to what is needed, driven by our aspiration to understand the picture better.”
Will you focus exclusively on data related to Parkinson’s?
We need to think broadly, and we can learn from data about other conditions. But we also need to identify and use only the information that is relevant and useful. We serve our community first, but that does not mean we will not consider shared campaigns in the future.”
Why is gathering and updating data so important?
“It is important because data is only relevant for a specific point in time. The most recent prevalence study we are aware of took place in 2017. But more people are diagnosed with Parkinson’s every day.
“You always need to update figures to reflect what is really going on in society. We can then understand what has changed between one time period and another, and make the case for addressing any increasing changes or concerns.
“For example, if we gather information now that shows us that the number of people with Parkinson’s in Europe has risen by more than the expected average, in terms of people aging in Europe, that says there is something more going on than a standard aging population – and that needs to be addressed.”
How can Parkinson’s Europe use data to push for change?
“If more people are being diagnosed, then there is even more reason for it to be addressed by policymakers. Because there is an exponentially growing demand on healthcare systems, and economic cost, which in the current financial climate needs to be reduced.
“If you have people with Parkinson’s being diagnosed younger, it will reduce their working years, and potentially the working years of their closest family member. How can we help support people to be able to stay independent and therefore work longer? We will lose active service people from the economy, both the people with Parkinson’s and those who care for them. So we need to understand that data so it can help guide budget-holders and decision-makers.
“We recently held a roundtable event in partnership with Abbvie. These discussions identified that the role of the Parkinson’s nurse is really key to the care of people with Parkinson’s. And that more of them are needed in clinical teams to help with Parkinson’s care pathways across Europe as a whole. The quantitative and qualitative data from this work was then shaped into this call to action, which was created in collaboration with EFNA, Abbvie and MDS-ES. We are hoping it helps move the dial in European parliament. When the resulting petition is launched, we need as many people to sign it as possible.
“Parkinson’s Europe’s manifesto is another example where we have gathered and summarised data, and turned that into a solid foundation with which to guide our work.
How will this pillar support innovation to ensure that the Parkinson’s community benefits from advances in data, research and technology?
“Data and innovation are two sides of the same coin. With data we can innovate, with innovation we can gather more – and make more sense of – data. For example, many apps and gadgets are now creating data. How can we make that data serve people affected by Parkinson’s best?
“What artificial intelligence (AI) can do with health data sets is very exciting. AI tools can be used to make sense of different data sets to create a fuller picture, in a way we have not necessarily done before. There is currently a lot of work being done in this area. We need to tap into this and learn from those doing it really well and leading in this new innovative world.”
How can the Parkinson’s community support this work?
“We are just at the beginning of this huge, complicated journey, and we are really excited to explore and learn.
“So we encourage the community to join us, and support our campaigns. There will be many more opportunities to be involved in the future – so make sure you are signed up to our newsletter and our engagement network to stay in the loop.”
Find out more about Parkinson’s Europe’s new strategy.
