Innovation with data - use the web as it was intended

By
Paul Connell, Founder, Open Innovations

Introduction

We set up Open Data Saves Lives as a response to #Covid19 to help people rapidly connect around health data to answer important questions relating to the pandemic. Over the past two years it has developed into an initiative to springboard our practice and open methods, looking at innovation with data across the health sector in the UK.

The events programme - hosted online and always free to attend - is supported by The Health Foundation, whilst the Open Data Saves Lives website and innovation activity is supported by TPP and SCW CSU.
screenshot of the 'why?' section from open data saves lives webpage
Why we do what we do
Credit: Open Data Saves Lives

Innovation

Along the way, we have been asked to help and advise more and more people and organisations that want to innovate with their data. They include:

The themes that we are seeing from all of these organisations currently fall into three areas:
  1. Helping people publish, use, and share data and stories using the web.
  2. Time and space - nobody seems to have the time or space to think and do.
  3. How do we work at pace to connect and get things done?
This blog post considers the first point, which I’ll simplify to 'Use the web as it was intended'.

As Tim Berners-Lee, inventor of the World Wide Web, said "it is for everyone."
photograph of olympic stadium at night, crowd have lit up the phrase 'this is for everyone'
This is for everyone, as seen at the 2012 Olympic ceremony.
Credit: Nick Webb, CC BY 2.0 , via Wikimedia Commons.

I’ll be following up this blog with two more on:

  1. Finding the time and space to think and do
  2. Working at pace to get things done.

Using the web

Frequently, one of the barriers that people face is the absence of a place to publish content easily. This could be data assets, technical guides, relevant resources, and other project output. In those situations where these things can be published, the next barrier is the search for 'permission' or a demonstrable user need rather than simply making it available and seeing what happens. The Cluetrain Manifesto describes the internet 'as a conversation' and many organisations still need to catch up to this way of thinking.

The Open Data Saves Lives website has become a place where people can confidently publish early versions of or updates to their work, allowing them to 'work out loud' and be in a position to invite constructive feedback from peers beyond their usual network. This has been made possible by the example set by Open Innovations, where everything from a project outline to the final outcome is published openly, accompanied by accessible ways of adding contributions. By being a non-profit, non-aligned, neutral convenor and publishing in the open like this, conversations can be started easily.

So in addition to our own content we now have external content hosted on the Open Data Saves Lives website:

NHS Digital - Open Data Task and Finish Group

NHS Digital - Mental Health Data

Really Useful Models (RUM)

This inability for teams to use the web to start conversations about their work is common across all the sectors that Open Innovations works in but it does seem a particular issue in the health sector - centralised solutions are preferred/procured by all parts of the ecosystem, and using innovative approaches appear to need explicit permission.

Open Data Saves Lives goes some way to helping people with this problem as the website is free to access, use, and share, and anyone can join in with the events. Speakers get a place to share their work, and guest posts provide a place to put work on the web that is indexed, searchable, and linked. We are more and more opening this up to all parts of the health sector to post their own content relating to the use of data in health.

The power of an informal network linked on the web, supported by minimal infrastructure and rules that can respond to what is required, has been clearly demonstrated so many times over the past two years in the operation of Open Data Saves Lives. When people and organisations realise that they can be involved, it can feel like a Red Pill Blue Pill scenario, where the truth is finally available to you and all of the possibilities open up.

We have been publicly critical of the FutureNHS approach to creation of a collaborative community. In contrast to Open Data Saves Lives, it is a closed community that requires a login; is not searchable on the web; and relies on email to communicate, which has been mentioned many times at our events by different representatives in the health sector as being a failure. In my experience it is like a time travel trip to the 90's and the age of poorly executed corporate intranets.

We will continue to evolve and respond to the emerging nature of our work and you can see the outputs of our most recent innovation exploration at this open Google Doc. You can also sign up now for the next Open Data Saves Lives session on 20 April 2022, which is focused on cancer.

Watch this space for Finding Time & Space and Working at Pace.