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#OpenDataSavesLives - moving forward

#OpenDataSavesLives was launched at the start of 2020 as part of the ODI Leeds open strategy, which itself had been developed after we had spent some time thinking about the future. Health and data had come up time and again as a recurring theme through several projects and events, and was also a focal point for many of our sponsors. #OpenDataSavesLives is a theme of work to explore and encourage innovation with health, social care, and data that would improve people's lives.

The coronavirus pandemic would prove that #OpenDataSavesLives is absolutely necessary and crucial.

Within the first weeks of lockdown in the UK, we rapidly convened the first #OpenDataSavesLives online sessions, hosting them weekly and inviting people to share their work, their data, their challenges, their requests for help, and so forth. The response has been startling, with organisations like the Health Foundation, the British Red Cross, Open Data Institute, and TPP amongst the regular attendees. We have a lot of experience of bringing people together, establishing agile networks, and creating collaborative relationships. Despite the challenges presented by trying to facilitate spontaneous connections and chat via online meeting platforms, the #OpenDataSavesLives sessions have been popular week after week and have resulted in several partnerships and collaborations. The sessions have also highlighted some problems in health data that stifle innovation - mismatched geography, lack of consistency in data, and data playing 'hide and seek' are just some examples.

As the pandemic progresses and new challenges arise, we wanted to think about how we keep #OpenDataSavesLives moving forward, and how it can continue to be of the most benefit to the widest range of people. There are four broad themes that we think should be explored further:

  • #GiveTheDataBack - all data that gets sent to the centre should be shared appropriately locally by the people that sent it so that they can use it for planning and research
  • #SaveLivesNotData - provide a robust argument against the loose language put up as 'privacy concerns'
  • #SmashDataControllers / #RadicallyOpen - break down traditional models of data ownership
  • #ShareMyData - encourage people to put their data in a safe place to learn from others health stats and inform research

We are already working in a #RadicallyOpen way with #OpenDataSavesLives - by publishing everything to our website, creating ways for people to contribute in their own time (often through Google Docs or similar), and removing barriers to participation by keeping everything free and open - which also demonstrates how the web was always intended to be used.

So what does the future look like for #OpenDataSavesLives? Thanks to support from the stimulus fund at the Open Data Institute, we have the opportunity to explore and discover what has made #OpenDataSavesLives so successful, how it has had an impact, and what we can do in the near future.

We are currently discussing with a number of partners (ODI HQ, The Health Foundation, NHS D/X/E, Beautiful Information and many more) about how we build #OpenDataSavesLives into a new institution that, provides the platform to innovate, be radically open and create huge value with the full data spectrum, data-science, artificial intelligence and technology. To improve health and social care services.

This will contribute to wider research and development for the Open Data Institute (and for ourselves to a degree) but it will also help us strengthen the amazing community that has come together around #OpenDataSavesLives, giving everyone more confidence and capacity to make a difference during this crisis.

#OpenDataSavesLives

6 Aug 2020, 11:00-11:45

The next session of #OpenDataSavesLives is on 6 Aug 2020 and features talks from: Sano Genetics about building a collaborative and open biobank; Leeds City Council about linking data so that the most vulnerable in society can get the care and help they need during the pandemic; and the Open Data Institute talking about their recent report about data stewardship models for health and care data. You can register for free via Eventbrite.