As a keen student of health informatics and how data can power better outcomes and accountability, it came as no surprise to me to find Care.data on the front pages of the broadsheets in recent months and weeks. Care.data is designed to capture and link data so it can be used by the NHS to analyse and improve outcomes. In the hands of the public, comparative data can support choice, transparency and accountability. Data enables innovation, efficiency and saves lives. Some headline!
But it is a minefield of Data Protection, Information Governance and privacy. Once exposed, a person’s most intimate concerns – their health – can’t be taken back. Patient confidentiality is paramount and any “Information Revolution” within the NHS must guard this principle to the end. Widespread concerns mean my former colleague from HM Cabinet Office, Tim Kelsey (now NHS England Director for Patients and Information) has extended the public awareness campaign for another six months.
Advocates of data should feel down, but not out. The truth is that we can’t run a £120bn health and social care system without use of more and better data. Winter pressures on A&E units showed that services are under severe strain from rising demand and tightening budgets. Without in-depth knowledge of which treatments are working, which services are underperforming, where systems are failing to join up or where patients feel their expectations have not been met, our world class health service will grind to a crushing halt. This is not about savings, it’s about survival.
Health is at the forefront of our public services in the degree to which data is already used to inform effective and efficient delivery. Whether collected by professionals, offered up by patients, open and freely available to the public, or closely protected, the potential of data within healthcare is huge.
The same principles apply to other public services and places. The City Growth Commission is interested in how cities can be empowered to create sustainable, inclusive economic growth. Much of the evidence we have received so far has focussed on fiscal devolution and linking public service reform with economic development at the city-level. Comprising up to 40% of cities’ expenditure, health and social care will be a crucial component of this and some (e.g. Bristol) are already starting to broaden their approach.
But what about education or infrastructure investment? How can cities securely link school destinations data with FE course completion and earnings data to tailor its skills offer? How can cities anticipate demand and install sufficient infrastructure capacity – whether utilities, energy, or housing? Data has the potential for cities for fine tune themselves as whole ‘systems of systems’.
Many cities, such as Birmingham, Manchester and Sheffield, are already looking to use Open Data released by government and public sector agencies, and not without challenge of accessing the data they need, whether public sector or from contracted suppliers. We’re at the start of this journey, with many complex issues to resolve along the way. As the Care.data example shows, maintaining personal privacy is vital for cities and services to maintain trust. But the prize for navigating the landscape is considerable; data is a critical enabler of better outcomes, productivity, and growth.