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Open Data Saves Lives - Thinking out loud

In this blog I will be taking my own advice 'to share and think out loud' about our #OpenDataSavesLives work, where ODI Leeds partnered with Beautiful Information during 2020.

This was completed with no direct funding and was self funded by each organisation.

But what is #OpenDataSavesLives? Well one of our early adopters put it best - "You are high quality - fixers, doers, joiner-uppers, innovators and challengers/agitators. Please keep it up."

#OpenDataSavesLives

In 2020, we hosted 20 events, worked with over 100 contributors & speakers, and reached more than 1000 people. This has been a great way to connect people, practitioners, and experts working on data and data infrastructure relating to the #Covid19 pandemic.

We collected everything we did, first as a 'hub page' on our own website, and then on its own website.

The success of #OpenDataSavesLives has resulted in so many positive conversations, contacts, and commitments, that we will launch a non-profit focused on 'Open Innovation with Data for Health & Care in April 2021.'

If you want to be involved (and we would love you to be) please email myself or Marc Farr.

The back story

#OpenDataSavesLives came about after we started to make sense of our first #Northernlands conference with NLinUK the Embassy of the Kingdom of The Netherlands. You can see more from this conference on the Northernlands Data and Startup Summit dedicated page, including presentations, videos, photos, etc. (Conference held in 2019, pre-pandemic.)

The first Northernlands event, May 2019
Credit: ODI Leeds

The speakers who joined us for Northernlands met us and our sponsors which, in 2019 for the first time, included NHSX & NHS Digital.

There were many highlights and fantastic speakers/talks and serendipitous conversations.

One of the speakers was Marc Farr, who kicked off conversations on how to be radical in Health & Data, and how the ambition and model of ODI Leeds could do great things in Health. Innovation and open data in health is something we had been asked about and we had looked at, but had deliberately steered clear before because it takes so long to get anything done.

So we added #OpenDataSavesLives to our 5 yr strategy.* We conceived the theme as a way for the Health & Care sector to join in with us, be #RadicallyOpen and do stuff together with data.

So all ready to go - thinking done (sort of); conversations happening with NHS Digital & NHSX as sponsors of ODI Leeds; the rest of our sponsors really interested; and the Open Data Institute happy for its scrappy little brother to do some more ambitious things.

*Yes we had one, written at the end of 2019. Given what 2020 was like we thought we'd leave it a while until we write the next one.

Then COVID-19 hit.

We faced the same harrowing questions and decisions as any organisation. What should we do? How could we help? What would make a difference? What else could we do but make a start and take action.

So I asked Marc Farr 'are you up for it?'

'Yes - what is it?'

Hmm...I wasn't entirely sure.

#OpenDataSavesLives COVID-19

This is what we did.

#OpenDataSavesLives and COVID19
Credit: ODI Leeds

So we were off.

  • Start with Data
  • Start by helping health professionals see what other people are doing and how they can help
  • Start by sharing stuff that is happening

Do not do things in the old way. Use the Internet as it was intended.

So we started with weekly sessions on a Thursday morning, lasting just 45 mins. The purpose was to emulate what might happen at our in-person events (now on hold due to the pandemic). People sharing what they have done, sharing code, celebrating great work, putting Health people next to Geo-Data people, next to Data Journalists, answering hard questions, and sometimes getting into trouble.

And we collected it all on the ODI Leeds website.

Through 2020, we reached 20 regular sessions and a bigger session at Northernlands 2 over 50 speakers about 30 regulars sometimes over 70 people - about 1000 attendees.

There are so many highlights that I won't mention them here, but you can find them all at the new website that ODI Leeds and, our partners in all of this, Beautiful Information built at the end of 2020. All of the stuff we've created & convened is collated here - this will be where all of the new work will live.

Partnership and an emerging organisation

The partnership of ODI Leeds & Beautiful Information in making Open Data Saves Lives has been a real highlight of 2020 for me personally and for ODI Leeds. The combination of Health & Social Care focused data people based in Kent and data innovation & web people in Leeds has been a massive positive in 2020 .

But so what - well, we now have a website.

We have made loads of new friends - and found loads of people who want to do innovation with data in Health and because of Covid-19. They want to do things differently.

We have developed 4 current themes:

  1. #GiveTheDataBack

    If a public body shares useful data to the centre (Govt/Ministry/Research) they should receive access to the full dataset so they can make their own deductions and comparisons.

    This means we build data infrastructure; we think about how it can be used; we allow the people creating novel innovation capital to capture it, share it, and also remix it with other activity and data.

  2. #SaveLivesNotData

    In simple terms - stop saying no to sharing data/code/learning.

    Don't hide behind Governance when the right thing to do is to share. There are many examples where 'No' is used when we face a challenge in data sharing, but we need to make sure great 'Yes' work is shared, re-used, and improved.

    We have a great example, demonstrated by the work done in Kent to share data on partner violence that we need to share everywhere. We have a seperate blog post coming on this.

  3. Be #RadicallyOpen

    Share widely, share often - join in and collaborate wildly.

    Understand that the best answers probably exist outside your organisation, your team and your immediate contacts. Use the web as it was intended.

    Sorry Future NHS, your closed club just won't cut it, but we can help.

    "Break down traditional models of data ownership, use the web to communicate, share and innovate together. Keep encouraging sharing of technology, ideas and drive change adoption."

  4. #sharemydata;

    Encourage people to put their data in a safe place to learn from others health statistics, findings and inform research.

We would like to change the conversation from 'why share data?' to 'why haven't you asked me to share my data so I can help?'

What next?

So what does this mean for 2021. Well, the Open Data Institute have provided a small amount of funding for us to write up what we've done so far, so that others might learn and benefit from our experiences. We have a number of partners who want to join in, sponsor our activity, and be part of the next phase. We can't say who yet but it is looking positive for our April launch.

In terms of concrete actions we have three things that we will definitely do in the first 3 months of 2021.

  1. The sessions will continue - the first one in 2021 will be on Vaccine Data on 21 January 2021. Please sign up and join in.
  2. We will use the partner violence example to show that #SaveLivesNotData is so important - we will publish a fully documented open project that respects people's rights.
  3. Covid-19 Innovation, Innovation, Innovation with data.

We have a business plan and a clear plan to scale up in 2021. We will launch a new non-profit organisation in April 2021, which we outline on these slides.

We would love you all to Invest / Support or Join in please do get in touch with myself or Marc Farr.