This post is based on desk research, conversations with various people in national and local organisations, and a talk I gave at an OpenDataSavesLives meeting. For more Coronavirus stuff that I’ve worked on see the Ada Lovelace Institute’s “Exit Through The App Store“.
Coronavirus is a pandemic. For a couple of centuries we have known that data is one of the most powerful tools in a pandemic. The UK prides itself on being a world leading nation in the use of digital, technology and data. Yet in England, the largest of the UK’s four nations, we are struggling to get data to local places so that they can use it to help save lives.
The role of local places in a pandemic
In England local authorities are responsible for public health in their area. They also play a vital role across many services including housing, business support, health and social care. They work with a range of partners to do this. Hospitals, doctors, care providers, police forces, charities, businesses and citizens (through both existing and new structures).
At the moment England can see the end of the first wave of the pandemic and is starting to relax lockdown measures. The focus has shifted to what is called test, trace, and isolate. Widespread testing to understand where the disease is, contact tracing to track down who else might have it, and isolation to contain new outbreaks of the disease.
These are tasks where national decisions and health research play a role, but a similarly important role is played by local places.
Having good data about the spread of the virus in local places might help a community group to tailor hygiene advice to meet language needs, a business organisation to distribute hand sanitisers to shops, care homes to take extra precautions, public health officials and statisticians to produce local predictive models, or a local authority to manage a local lockdown.
Local organisations are often the most appropriate organisations to do this because their staff know their places and the people who live there. They are trusted, or not, in different ways than the central government.
Data and information about the pandemic
But to take these decisions they need information.
Some of this information will come from these organisation’s connections with their places – a community organiser might hear of an outbreak because a friend is affected by it, or people might see complaints about shop hygiene on a local social media page.
Other bits of information need to come from data, for example the number of people tested in an area and how many were positive, or the number of contacts traced and whether there is a difference between demographic groups.
Local places are struggling to get access to this data, but it does exist.
The national government has set up national programmes like the Covid-19 data store, NHS Test + Trace, the NHS symptom tracking service and Project OASIS – which brings together data from various symptom tracking apps. As an aside this seems to be an exceptionally English approach, most other nations of a similar size seem to have built on existing regional and local structures.
All of these national programmes use data, for example to improve operational performance, to inform national decision makers, to support medical researchers, and to inform national media debate.
But the data they collect and steward is not getting to local places and those local places need it too.
It is not just me saying this
In private you hear the same and more.
Charities collecting and publishing data about social care because of government failure. Local academics being told that their research needs to conform with national health needs. Regions exploring whether to launch their own symptom tracking services. Businesses offering data services that may be of lower quality than that which the national government already holds. Local officials and community groups struggling to find out who to speak with to even start a conversation about data access.
In May there were reports that an interim operational review by a cross-government team highlighted the problem of data access. Tom Riodan, the CEO of Leeds Council, was given a role in the national Test + Trace programme after that review. His role is not only about data access but, as a result, some progress seems to be happening.
Despite this the national programmes still lack urgency and there are now concerns that the government will supply local places with dashboards that it and its national partners design, rather than giving local places access to data so that they can use it to design and operate whatever decision making tools they need.
Meanwhile the public complaints will continue and the opportunity to make decisions that could save lives will be lost.
Accessing and using data in trustworthy ways
When data access is provided then it will need to be used in trustworthy ways.
Research by organisations like the Ada Lovelace Institute, UseMyData and Understanding Patient Data indicates that most people are more comfortable with data use if they see benefit for them and their communities. I hope local places have learnt lessons from the national government’s failures on transparency and excessive confidence in the capability of technology and data to solve complex problems to realise that even though they have the legal power and start with some trust that they need to to be transparent, engage with people who might be impacted, and be wary of harm.
Local public sector organisations have had the legal power to use personal health data since COPI (Control of Patient Information) notices were issued back on 1 April 2020. The notices were passed to support this kind of use.
Other organisations, such as charities or businesses, can use open data which is aggregated to a safe level.
For these organisations then daily publication of symptom, testing and contact tracing data at the level of LSOAs (Lower layer Super Output Areas) is likely to have the right balance between data protection and usefulness for public health. It is hard to be certain without access to the data.
If the national programmes do not have the expertise to navigate these issues then they could get help from the Office of National Statistics who can both work through how to publish the data and help to communicate how this data for local operational decision making has different characteristics to statistical data.
The power of networks
When the data is available then it can start to rapidly be put to use.
Some local authorities are already working with their communities to prototype what they can do when, or if, the data arrives.
In other places there are networks ready to help.
ODI Leeds’ OpenDataSavesLives connects local authorities, health organisations, academia and businesses across the country. There are networks for specific groups of people like the Association of Directors of Public Health or Catalyst which helps charities. And networks for specific places like the Newcastle-based National Innovation Centre for Data’s DataJamNE, the LocalCoronavirusResponse team, or the network around the London Office for Tech and Innovation.
Networks like these can help get the data used in building tools for local places, evaluate the outcomes to discover what works and what does not, and share their learnings across the nation.
But they need the data
There are lessons to be learnt here, and not just about public health programmes in a pandemic.
If the UK wants to level up across the country it will need to do a lot more work on devolving data governance and learning how to get both local places and citizens represented in decision making about data. Perhaps the plan for the UK’s recovery after the pandemic or the national data strategy will tackle that particular challenge.
But there are also immediate steps that need to be taken.
We urgently need to get data out of these national programmes and to local places. It will help save lives.