The #OpenDataSavesLives launch sessions - what next?

#OpenDataSavesLives was first mentioned in a blog post from our founder Paul Connell just after we had spent time as a team thinking about the next 5 years at ODI Leeds. Open innovation in healthcare was to become a core theme of work for ODI Leeds, alongside #OpenGovTech (launched in September 2019), Open Transport, and Radically Open. We decided to launch this new workstream at the start of 2020 with two initial innovation sessions - one in Bradford and one in Leeds, taking advantage of each city's robust yet different healthcare ecosystems.

Each session had the same structure where the attendees were split into three groups and a member of the ODI Leeds team facilitated and documented the discussions.

You can read the two Google Docs for all of the notes in full - Bradford & Leeds - but we are going to summarise the main themes and challenges that emerged out of the two sessions. #OpenDataSavesLives has only just begun so we are expecting ideas and responses to the theme to be quite fluid. The outcome remains the same - helping people to openly innovate in health and social care for the benefit of everyone.

A healthy data practice

An overwhelming majority of attendees cited 'problems with data' as their first or main hurdle to jump. These problems ranged from not knowing what data was available (both internally in their organisations and in the wider context) to the lack of data standards and compatibility between different systems. In large health and social care organisations, it is not uncommon to have multiple systems (each with proprietary formats, rules, etc) deployed to manage various departments. People shared stories of several ID numbers being assigned to the same patient in order to track their healthcare provision from start to finish! Feedback and quality control was also mentioned as a vital aspect to best data practice. Larger organisations can see if their data is being seen or downloaded but they're not always aware of how the data is then used, improved, etc. An accessible way for data users to provide feedback was highlighted as a desired feature in the future.

Solutions to some of these problems are in-progress - there is a new NHS open dataset catalogue currently being developed with accompanying updated data dictionary. Leeds was also one of the first cities to develop and trial a 'personal care record', where hospitals, GPs, and other health and social care organisations could access vital patient data in a single place and format.

Swift cultural shift needed

The next challenge that a majority of people faced was entrenched behaviours and attitudes within an organisation - basically, the culture that they have to work within. Lack of knowledge and understanding about what (open) data is, why it could be useful, etc, which can lead to slow-decision making that requires a use case before approval. This is where better storytelling would be useful, and this was echoed by the attendees. They all wanted to see and share more success stories, examples of data being used, innovative working techniques, etc.

Sharing data internally was also proving a problem - sharing 'up and down' in an organisation and trying to navigate data silos was stifling any progress. Several attendees expressed a desire to see more 'sideways' sharing too, where organisations with the same purpose but in different locations would share data as well.

There is also a pervasive feeling of fear in some organisations - fear of getting things wrong, wasting time, resources; fear of losing jobs if data collection/cleaning became automated; fear of change. The use of storytelling and sharing success could also be a solution for this challenge as well. There is also something to be said of 'owning it' - if you publish data that says you are not performing as well as you would like but you own the situation and say 'we are going to fix this', it demonstrates a commitment to being better.

Sharing more and building trust

Part of the challenge is trying to be more transparent to increase trust with the public, but as the public become more aware of their data rights amid the misuse by commercial organisations, they will want control over how their data is shared and for what purpose. Health and social care organisations need to get better at communicating with the public.

They could also talk to their data communities more often too. There are passionate people who work outside of health and social care but still want to help. They have their own data stories to share, which could positively feed back into a health and social care system. It is not uncommon for large public-facing organisations to get a bit stuck behind brand guidelines and content rules, so a neutral place for sharing these data stories and methods would be an immediate improvement.

So what happens next?

As with all of our innovation projects, we don't want to dictate the direction or govern the flow. We want to be there to help when people feel ready to take part, but we also want to inspire and encourage people to think about *how* they take part. Which is why we like to ask 'what can you do tomorrow?' Small, actionable tasks - something as simple as send an email, talk to a colleague, etc.

At ODI Leeds, we will start organising a quarterly meetup to share #OpenDataSavesLives stories so that others can see the benefits of sharing data, and our blog is always open to guest posts, so if you're looking for a neutral place to share your thoughts and experiences from a data-driven project, get in touch.