The Department of Health has published its “The Power of Information: Putting all of us in control of the health and care information we need”. The document sets out how it will use information to fulfil its obligations found in the Health and Social Care Act.
The document has material for Information Governance and Health Records. Both groups of people will benefit from reading it. What I would suggest is that there is a more interesting element to the document.
Chapter two hints at a possibility that patient will have control over their information to some extent. I would argue that we are seeing the first signs that a records management revolution is coming to the UK public sector.
What is the big blue button?
The United States government has taken great strides in giving people access to and control over the information the government holds about them. The best example of this is the way the government has given war veterans access to the medical files. The US launched a successful access programme called the Big Blue Button. The Big Blue Button allows a veteran to download all their medical files into a format that they can share with whomever they want. With the press of the button the records are downloaded to be shared with friends, family, insurance companies, or health professions. The programme puts the applicant in control of their information.
The future is data portability (this is an old idea) and one that is developing rapidly. The idea has expanded to include the big green button, which covers home energy use.
A records management revolution but with a British flavour.
I wonder if this is the next stage for UK public sector or if it is a step too far. I believe it may be coming soon because the idea is in the Health and Social Care Act as a principle. In section 23 (13H and 13I) there is the principle that the patient should have access to their care information. The access will allow them to be involved with their care. In addition, it allows them to choose their care. To make a choice, they need to have the information to share with others.
At the same time, the idea links to the new EU directive about personal information and data portability. Although the data portability is focused on personal information on social media sites, the principle is applicable to these situations. I would argue that the idea is coming.
I can see problems on the horizon. The UK public health system is not geared for this type of sharing or involvement with the patient. To be sure, the system is working in that direction. However, the approach to personal information personified in the Big Blue Button theme is not one that looks ready for the UK.
I make this claim because the Power of Information is being touted as increased transparency. If the agenda around patient access and control is confused with transparency, then it will not work. The ethos and goal are completely different. If it confused with the former (putting patients in charge) equated with the latter (transparency) (or claim that the former is the latter), it will destroy the programme. Archon Fung et al.’s work in this area suggests that touting something as a transparency programme can undermine its intended benefits.
Perhaps I am being overly pessimistic about the chances of the Big Blue Button coming to the UK. Whatever the outcome, it is an exciting time in records management.
- Tips for a unified records management approach (net-security.org)
- UK Public sector estimates to save 20% in budget while using OA journals (scienceintelligence.wordpress.com)