By Gaia Marcus, Data Strategy Lead, Parkinson's UK

Published: 12 February 2018

Care.Data. Aren’t those two words designed to send a shiver down the spine? Two words that can shut down any conversation about sharing patient data. Right. Right?!


It is time to have a grown-up conversation about patient data. Yes, there are risks. Yes, there are fears. But whilst we sit here wringing our hands, start-ups and the tech industry more generally are very much aware of the potential of health tech and of using advanced analytical approaches to unlocking our health data.  This isn’t said to scare anyone: we should be using and championing the use of patient data. If properly managed, findings could be transformational. However, power and agency are important here: this cannot be left to the private sector, alone.

The medical research charity sector has a unique role to play in having the right conversation about patient data. Sitting between the wider public (or patients and carers, if you prefer, but odds are that will cover most of us, at some time), researchers, pharmaceuticals, and statutory services, we need to own our place as thought leaders shaping the conversation around patient data.

Indeed, the medical research charity sector are:

  • custodians of patient data: such as the UK Cystic Fibrosis Registry which holds data from everyone with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland who opts in (c. 99%)
  • membership organisations that amplify the voice of patients: such as Parkinson’s UK, who amplify the voice of our 37,000 members and their concerns in our campaigns
  • largescale funders of research that uses patient data – a lot of the sector, including Parkinson’s UK and its Parkinson’s Virtual Biotech work

Video available on YouTube

We listen, we lobby… and we need to lead.

In the sector?!

If you are not already signed up, come join us at Delving into Digital, on the 26th February in London. Topics will range from showing exciting innovation in the digital space, such as Orthopaedic Research UK’s Artificial Intelligence app for patients that helps them recover quicker from hip and knee replacements; to a panel session on ‘making the case for patient data’ with speakers from the Cystic Fibrosis Trust, the Wellcome Trust, the Brain Tumour Charity, and others.

Not in the sector?!

Definitely join us! A key focus of the day is both examples of and how to partner with tech and industry, and with the public sector. We cannot do this alone; and those who seek to improve patient health or use patient data, will be most effective when working with medical research charities.

Is this for me? I’m not sure I/my organisation is digital, or data mature enough to take part?

I’d call it the elephant in the room, but it definitely isn’t. Charity digital and data maturity is a hot topic at the moment, and rightly so. This is something we are putting a lot of thought into at Parkinson’s UK, with a focus on both digital and data maturity within the organisation. Everyone is at different stages of this, and the conference is designed to provide inspiration, opportunities for collaboration, but also opportunities to explore and learn- whatever your level of data or digital maturity. We’ll also be doing a very quick assessment (OK- it’s a poll!) of where attendees are, on the day, and will be sharing our findings during the conference.

Delving into Digital is about understanding where we are, as a sector, understanding our power and voice, and using it. Join us.