From frenzy to clarity: How our COVID-19 response has helped us put our community and data at the heart of our decision-making

Lessons from the pandemic: pressing fast-forward on our data and insight ambitions

How Parkinson’s UK’s COVID-19 response helped put the Parkinson’s community and data at the heart of decision-making

Co-authored by: Charlotte Jackson (Associate Director of Communication and Engagement), Laura Cockram (Head of Policy and Campaigns), Polly Cook (Service Transformation Lead), Erin Skinner (Head of Business Design and Planning) and Jesse Mears (Head of Data Strategy)

At Parkinson’s UK we’re powered by people. We co-create with, listen to, enable and empower people living with Parkinson’s and their families, friends and carers to live their best lives until we find a cure. Like many organisations of our age and size, Parkinson’s UK is working hard to break down organisational silos and use data better in our decision-making. You can read more about our transformation journey here.

The problem

Our immediate response to COVID was impressive. Every team was listening, responding, reacting, doing what they could to meet the needs of our community (you can read about how our service transformation team pivoted here). But the learnings in each team weren’t being shared and this felt amplified by working remotely from each other and adapting to the chaos of a pandemic. It felt frantic.

What one team knew about how people affected by Parkinson’s were feeling was not systematically passed onto another team — valuable insights were used in pockets but then discarded. And our teams were working long hours — struggling to prioritise the fast-changing needs of our audiences and different teams’ perceptions of this. We needed a way to share information, turn it into insights, and use those to prioritise together.

Our response

We got the equivalent of a cardboard box, some pens and scissors, and made something that we could all play with. Together. It wasn’t actually a cardboard box, but we used what we had: people and their ability to collate information and make sense of it together. The “cardboard box” we crafted to overcome this problem currently looks like this:

1. We bring together a group of people from across the organisation every two weeks. People from across every department — from research to campaigns, from comms to services, from volunteering to business planning
2. Set the ground rules (e.g. we are working this out together, it might feel messy at first, please collaborate and be open — let’s improve it together)
3. Gather the evidence for the needs of our community from whatever data sources we have access to (quantitative and qualitative; see example evidence slide below)
4. Bring this evidence to a fortnightly organisational-wide insight synthesis. Here we collate all the data, identify themes and write insight statements that capture the evidence-based needs of our community (insight: short statement that gives us enough shared understanding to take action)
5. Assess the insight statements based on priority / importance and robustness of evidence, then put in context of what we are already doing that might meet the underlying need
6. Prioritise which insights need action and write “How Might We…” statements to get teams thinking about the opportunities the data present: what could we focus on, pivot or stop doing?
7. Share, share, share across the organisation
8. Embed in team processes to enable action (we are working on this by sharing different teams’ experiences internally and facilitating a learning session on how one could go about doing this)

The impact

1. We are making the most of the data and evidence we have by sharing it in an actionable way

Before, a team would collect data or evidence (like the results of a campaign, pieces of research that we have conducted, funded or participated in or data from our ongoing service delivery) and use it themselves. They would use it to manage the work, share it with stakeholders and perhaps publish through internal comms articles. But the sharing process was siloed and slow. Suddenly we have a way to translate those findings rapidly into usable insights for all.

For example, we’ve just done a survey with Lancaster University into the impact of COVID on people with Parkinson’s. Instead of sharing the summary report internally and hoping colleagues find time to read it and pull what they need from it, we have a way of making the research relevant, digestible and useful to the whole organisation, ensuring that those findings have a real impact on people affected by Parkinson’s (insight statement below). Importantly, the evidence underlying the insight statement can be traced back through the process and shared with colleagues.

Insight statement: “The coronavirus restrictions have resulted in families, friends and carers taking on more care responsibilities. They have less time away from the person they are caring for and this is having a negative impact on their relationships and their mental and physical health.” [May 2020]

2. Insights are being applied to the work of different parts of the organisation, creating maximum impact

Our service transformation team, Parkinson’s Connect, created the offline Parkinson’s coronavirus advice booklet in response to insight that our most vulnerable audience were not online. We could also see from our insights that online audiences and volunteers were worried that Parkinson’s UK and they themselves weren’t doing enough to reach those offline. So we shared the new resource with our online audiences so they could help get it to those who need it.

Without this insight that online audiences wanted to help reach those offline — and wanted to know what the charity was doing to reach those offline — we’d have probably assumed there was little point telling these audiences about this resource.

3. We’re learning about data and insight by doing, rather than theory, accepting ‘good enough’ instead of perfect,and showing that data isn’t just for the data nerds — it’s actually for everyone else

This process was kicked off by our comms team, not our analytics and insight team. The comms team were at the coalface during the ‘crisis weeks’ feeling the pressure of conflicting priorities — everyone’s message was urgent and critical. And chats with colleagues in other teams revealed they felt the same. Our insights specialists brought structure and experience of how this could work. And we reflected and iterated as a group each time we did a synthesis about how to improve the process and outcomes for everyone involved. It’s not perfect; it doesn’t need to be.

So rather than being a specialist-led piece of work, this is something that many teams across the charity are working on together and feel ownership of (hence co-authoring this blog). The process itself is helping to dissolve the silos that we work in and break free from the paralysis of perfectionism. And we’re all learning by doing about how to use, or improve our use of, data and insights to shape our work.

4. It’s a way of working that’s here to stay

We’ve taken “COVID response” out of the narrative of this work now and we are working out how this process can be used to support our ongoing work to continuously improve as an organisation. The pandemic has provided the opportunity and the urgency to make this change. We are working in a way that we should have always been and we aren’t going to let it go away.

Conclusion

It’s an early prototype, but it’s had an amazing impact already. Our Director of Transformation, Julie Dodd, described it as the charity’s “North Star” — something that will lead us through and beyond the current COVID response.

Every single part of the organisation has contributed to developing and using these insights to drive their own work: including comms, service transformation, volunteering, policy and campaigning, fundraising, and service delivery. For the first time, we have an up-to-date, consistent and data-driven understanding of our community’s needs for the whole organisation to use, taking us a step closer to our ambitious OKR for all operational and strategic decisions to be based on data-informed insights. It’s keeping our focus on how we can best support the Parkinson’s community and is helping to dissolve the silos we know we need to overcome to have the biggest impact for people with Parkinson’s, their families, friends and carers.