Week Note 0: Data Strategy at Parkinson’s UK

Week 0 is over and I’m good to go. The missing piece to Parkinson’s UK Data Strategy? Well it might just be you!

It’s day 4 of the new gig. Data Strategy Lead for Parkinson’s UK. I have my name card, my key, my fob, my laptop. A locker even. Signature all set up, team met, intro emails sent out, key documents read. Now what?

Now is the bit where you come in: my network, my extended contacts, people living with or affected by Parkinson’s, and people working in pharma and charities and business that I have not yet met. Parkinson’s UK believe that a cure can’t wait; we need everyone to be all in.

A cure can’t wait. So how is a data strategy relevant? For me, a data strategy is just setting out how Parkinson’s UK uses data to meet its strategic objectives.

The Parkinson’s UK data strategy will examine how data that we:

  • own
  • can access
  • can create

…will help Parkinson’s UK to:

  • find a cure
  • hand over more control to people living with Parkinson’s
  • ensure quality services are available as standard country-wide

I am currently envisaging a strategy that drives a range of projects, both internally and externally.

Control: For example, how might data created by the Parkinson’s UK Helpline be used not only to ensure its quality, but to ensure that any knowledge generated by it is handed back to people living with Parkinson’s?

Imagine this hypothetical conversation:Mr Smith, you may be interested to know that almost half our callers using the same medication as you, experience very similar side-effects to the ones you describe. Some of our callers suggest that taking the medication after, not before food is helping. Would you like to try that?”

Cure: Similarly, we have access to a veritable treasure-trove of data that is generated by research that we fund; the rise in health apps and wearables mean that tech-supported early diagnosis is getting closer and closer; and the likes of 23andme are ‘digging through your [genetic] data for a Parkinson’s cure’.

So who should I be speaking to that can help us access the skills and expertise to make the most of this data? From AI and natural language processing for our Helpline data, to data scientists who can make sense of wearable data, to researchers itching to get their hands on genetic data, to some, all or none of the above. Who do I need to be at a table with?

Quality, country-wide: Parkinson’s UK is committed to ensuring that everyone has access to the best possible services, with no-one being hindered by a postcode lottery. This is why the helpline and other frontline services are funded through unrestricted income, instead of only being provided where they are commissioned.

What might we be able to build using open data or data that we can create, for example through Freedom of Information request? At Centrepoint UK, the Youth Homelessness Databank team used official government statistics and local authority FOIs to show that youth homelessness was a far bigger problem than was shown in official statistics. What data could Parkinson’s UK be generating or requesting that will give us the overview of what is available for Parkinson’s UK sufferers, local area by local area?

Parkinson’s: we believe we can beat it.

If you have the skills, knowledge, experience, contacts or ideas that can help us make the best data strategy and programme possible, please be in touch!