Let's press for health record downloads

If personal data is important to your organisation, perhaps it's time to give it away. Not to mislay it, as has happened all too often recently in public services and elsewhere, but to make a virtue of giving it back to your customer. Set a date and invite the minister to launch a big button on your web site labelled "Download my data now". That's what the US Department of Veterans' Affairs (VA) did on 2 August. They had President Obama himself announce the "Blue Button", which lets veterans download personal health information from their existing My HealtheVet account . The existing VA-centric HealtheVet personal health record holds self-entered health metrics such as blood pressure, weight and heart rate, emergency contact information, test results, family health history, military health history, and other health related information. The Blue Button lets veterans download an Ascii text file. Anyone can download a sample record, and there's a "developer challenge" to invite hackers to do cool things for the people who have just got their data back. This is a quite new direction for the Rewired State programme here: doing clever things not just with public data government releases but with the personal data government gives back to the individual. Think of it as an automated version of the Data Protection Act's subject access request process. It's a start, rightly high profile, and a thoroughly good idea. The question is where does this all lead? The powerful, long term answer to that is set out in a new white paper from Mydex, a social enterprise and a community interest company based in the Young Foundation. In it Mydex founder Alan Mitchell, author of Right Side Up, proposes that a fundamental shift in personal information management – where individuals 'own' and manage their own personal data – will transform relationships between individuals and organisations with significant benefits for both sides. It will also prove to be the catalyst of an entirely new business and service ecosystem of personal information management services. Called 'The Case for Personal Information Empowerment - The rise of the personal data store' it sets out the context and 'big picture' of this way of working, and its impact on individuals, public service, business and society. In health as elsewhere, the core problem this approach tackles is that of data logistics at every stage through the shared journey between customer and supplier. The overwhelming majority of patient service problems, and a staggering amount of cost to the taxpayer, arises because the patient or staff member doesn't have the information they need at the right time. Patients, who should be the centre point of integration in the whole process, play no structured role in the data exchanges. But they should of course. They must. After all, whose health is it anyway? And whose data is it anyway? So get ready to give health data back to the patient. Invite the minister, then decide what colour your "Download my data" button is going to be. William Heath is co-founder of Mydex