BLOG: do we really need to wait for the government's data proposals when we can do so much already - if we are brave?
There is no doubt we are tackling an unprecedented elective care backlog. As Chris Hopson, chief executive of NHS Providers has highlighted, the NHS is going at ‘full pelt’ flat out, to recover care backlogs’. Combined with the likely increase in hospitalisations from COVID-19, many people are pointing to a looming capacity crisis.
I have previously written and talked about how linking data sets from different parts of the NHS can help us run NHS hospitals, GP practices and community services more effectively. The government’s COVID-19 Collection of Patient Information (COPI) notice allowed us to access, link, store and analyse data in a way we have never been able to before. This undoubtedly helped us to keep our health and care services going throughout the worst phases of the pandemic.
Data sharing now seems to be top of mind for this government with the publication of its policy paper ‘Data Saves Lives’. However, at OpenDataSavesLives we don’t need to be told that data save lives – it’s our name and our DNA. We believe there needs to be a greater emphasis on using the web to communicate, share and innovate together, helping us make more impact on health outcomes, faster. We also feel strongly that we don’t need to wait for another white paper to give us the green light to share data in this way.
By being brave it is already possible to find shortcuts to data sharing without riding roughshod over information governance. For example, the increase of domestic abuse during lockdown has quite rightly attracted a lot of news coverage over the last year.
Through a brave approach to information governance, we’ve created research links between the police and the NHS to identify families at risk and support them.
The project was led by Richard Vickey, Detective Chief Inspector, Kent Police and had two phases. The first was to understand how much knowledge police had of families that went on to have a future domestic incident and how much health services knew of them via A&E data. The second phase is attempting to identify differences in police and health data between the lethal/near lethal group and the lesser harm group to see what criteria may be used to identify higher risk people in order to prevent future incidences of abuse. This second phase is still in progress, so watch this space.
As well as demonstrating how we can be brave without having to build expensive data systems and complex IT infrastructure, the project goes to the core of what we do at OpenDataSavesLives. We know we can build data bases that are just as good, if not better than the ones the government is working on without having to spend millions of pounds.
Building a better dataset than the government’s also means building it in a way that is meaningful and useful to healthcare workers and the public. For instance, rather than collecting and disseminating data by CCG (which is a term only understood and used by a minority of people in health and care) we have been building by local area, so that people can get a real understanding of the situation that is most relevant to them, making decisions based on local level data that they can understand.
So let's not waste time setting out our good intentions when we have so much we can do right now, there really is no need to wait. If you would like to find out more about the projects we have been working on you can visit: https://opendatasaveslives.org/, or email firstname.lastname@example.org.
Dr Marc Farr, Founder, OpenDataSavesLives