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OpenDataSavesLives: The Unconference - Ways paved and lives saved

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We ran the first #OpenDataSavesLives 'unconference' on 29 September, building on the success of the event series which began in response to the COVID-19 pandemic.

After hosting 29 #OpenDataSavesLives sessions - with a total of 81 speakers and 1129 attendees, including special events like our interactive Goldacre Review Special - it was time to celebrate what open data can do for health care on a bigger platform. The idea behind #OpenDataSavesLives: The Unconference was to not only give experts a stage to present their experiences but also encourage networking and discussions about participants' most pressing issues concerning data, innovation and healthcare.

The event attracted attendees from different backgrounds, ranging from data scientists to health practitioners to participants from outside of healthcare looking to learn from each other and push the intelligent use of data forward. To make the most of the online environment we used the event hosting platform Airmeet which allows for discussions at virtual tables, and the online whiteboard Miro to share ideas through post-it notes as we would in person.

In addition, the #OpenDataSavesLives team were using this event to help shape the way in which ODSL will develop over the next 12 months.

The Talks and Q&As

Throughout the day our speakers covered topics ranging from open source access to health data and how it is used in innovation and collaboration to analytics for mental health, and the future of data analyst recruitment.

After kicking off the event with Paul Connell and the event sponsors - Chris Bates representing TPP and John O'Connell from NHS SCW - Marc Farr jumped straight in with the first presentation of the day. His talk and Q&A titled "Reducing inequalities and unwarranted variation in health" covered how health is tied to socio-economic background. Similarly, Ed Parham from Space Syntax examined the effect that the urban layout of cities has on quality of life and personal health in "Understanding place to improve health outcomes".

There was a lot of advocacy for collaboration and openness in health care data: Chris Roebuck from NHSX introduced us to the efforts of the Open Data Task & Finish Group to make health data more usable and accessible in "Working together to improve open data in health and social care". GP and Chair of the RCGP Health Informatics Group Marcus Baw shared a programmers' perspective and historical explanation that "Open source is the only way for medicine". Tina Woods from APPG for Longevity presented the Open Life Data Framework which includes quality of life data from the public and private sector to paint a more holistic picture of health longevity in "Open life data to support health longevity for all".

Along a similar line of open health data platforms, Chris Bates from TPP gave us an update on the impact and successes of the OpenSAFELY project in "The OpenSAFELY platform: 18 months on" and Kate Croft and Paul Jennings from NHS Digital explained the infrastructure and use of the NHS' Mental Health Data Hub in an "Introduction to mental health data".

Finally, John O'Connell from SCW introduced the AnalystX accelerator programme which has the aim of "Building analytical and data science capabilities".

You can find more detailed information on the speakers and rewatch their talks on the #OpenDataSavesLives: The Unconference event page.

The Discussions

You can read up on all the discussion notes on the #ODSL Unconference Miro board.

ODSL: The next 12 months

To get everyone warmed up on how to use the Miro boards we asked the attendees to signpost where they see #OpenDataSavesLives in a year.

Miro board of where #ODSL could go in the next 12 months.
Miro board of where #OpenDataSavesLives could go in the next 12 months.
Credit: ODILeeds

One strand of the discussion focussed on helping the NHS manage their open projects and adding to their tools. Another highlighted the potential for #OpenDataSavesLives to promote a shift in patient focus and how new talent is recruited and trained. Moreover, #OpenDataSavesLives' role as mediator in data sharing between healthcare and public/ private sector organisations, and the data management and infrastructure demands going along with this, were highlighted.

Audience Selected Table Discussions

Following the brainstorm on the future of #OpenDataSavesLives we split up to discuss some of the topics that crystallised out of the discussion in more detail.

Tables 1 and 2 discussed recruitment and simple analysis and visualisation tools. The conversation covering recruitment put a strong focus on properly funding, training, and upskilling employees to create a stable influx of new talent in healthcare analytics. The discussion on visualisation especially highlighted the opportunity of using existing tools especially in terms of graphing geographical data.

ODSL Miro boards about recruitment and analysis and visualisation tools.
#OpenDataSavesLives: The Unconference Miro boards about recruitment and analysis and visualisation tools.
Credit: ODILeeds

Table 3 collaborated to cover... well... collaboration (and innovation). Here people agreed that tools and data infrastructure were more important than yet another dashboard. Also, these should be shared across industry and practice, and geographically. At the foundation of this is an open mindset where innovation is encouraged and not restricted. A way to do this is for #OpenDataSavesLives to keep encouraging experts to share their real stories so we can learn from each other.

ODSL Miro Board on Collaboration and Innovation.
#OpenDataSavesLives: The Unconference Miro board on collaboration and innovation.
Credit: ODILeeds

The final table focussed on the patients and their role in health data. At the foundation of this discussion was the continued push to educate the general public on what their data is used for and how it remains protected. This means sharing real useful outputs of sharing medical data but also finding the most practical way to manage confidential data.

ODSL Miro board on Patient Focus.
#OpenDataSavesLives Miro board on patient focus.
Credit: ODILeeds

Outcomes and What's To Come

After an exciting day of listening and discussing medical data opportunities, we're ready to keep going and make a massive difference.

After seeing the interest in mental health data we have already set up the next #OpenDataSavesLives session as a Mental Health Special on the 10th of November. And since we're so excited we've even already set up the session following this on the 8th of December. Sign up for either of the events here!

In even more exciting news we're hoping to be running our first post-pandemic physical #OpenDataSavesLives event in the early months of 2022. We'll keep you posted on that! In general, you may see a few things changing around the #OpenDataSavesLives initiative as our platform keeps growing and we want to keep making our events better for you. So come along to the next one to see what we've got in store.

You can find all of the previous talks here and we'll be writing a separate blog post soon to distill the feedback we got during the afternoon sessions and show you how to become more involved.

Do you want to share and show your research or work with open health or mental health data? Get involved via hello@odileeds.org.