Local data for local places can help save lives

Coronavirus is a pandemic. For a couple of centuries we have known that data is one of the most powerful tools in a pandemic. Yet, in England 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, 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 sanitizers 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.

These local organisations are often the most appropriate to do this because they 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 all of these organisations need information.

Some of this information will come from these organisations connections with their places - a community organiser might hear of an outbreak because a friend is affected by it. 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.

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 public you can see regional Mayors, MPs, and Directors of Public Health complaining.

In private you hear the same and more.

Charities are 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 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.

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 governments 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 they need to to be wary of harm to people and use the data in trustworthy ways.

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.

When the data is available it can start to be put to use rapidly.

Some local authorities are already working with communities to prototype what they can do when, or if, the data arrives. There are networks for public officials like the Association of Directors of Public Health; Catalyst which helps charities; ODI Leeds OpenDataSavesLives and the Newcastle-based National Innovation Centre for Datas DataJamNE which connect local authorities, health organisations, academia and businesses; and in London the LocalCoroanvirusResponse and the London Office for Tech and Innovation who are ready to start work.

Networks like these can help get the data used in building tools for local places, evaluate it to discover what works and what doesnt, 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 how to devolve data governance and get both local places and citizens represented in decision making about data. Perhaps the plan for the UKs 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 need to get data out of these national programmes and to local places. It will help save lives.