By Richard Handford
At the start of this month Prime Minister David Cameron made a speech to a health conference in which he said the UK government would consult on changing NHS rules so that patient data could be made more readily available to pharmaceutical companies for research.
The key proposal laid out by the prime minister was shifting the default setting of the health service’s constitution so that patients’ data can be used for research unless they exercise an opt-out. “This will make annoymised data available to scientists and researchers on a scale never seen before,” he said.
The big picture in terms of the UK’s wider economy is to make this country particularly attractive to pharma firms. Cameron said he wants to make the UK “the best place in the world” for research. And mobile phone technology is playing an increasingly important role in how participants in drugs trials are identified, recruited and their progress monitored during the actual trial.
Not everyone thinks the Prime Minister’s proposal is such a good idea. Privacy advocates argue that patients and not the government should have control over their data. Interestingly some supporters of mobile health in the US have argued that its real benefit is patient empowerment and a shift in the balance of power towards the individual and away from the medical professional and the state.
And some critics are even uncomfortable with the idea that anonymised data offers sufficient protection. Emma Carr, the deputy director of civil liberties group Big Brother Watch, told Mobile Health Live: “An individual's name not being mentioned does not mean the data is anonymised. To make it useful for medical research, companies want to know sex, age, race and possibly sexual orientation, all of which makes the data less and less anonymous.”
But the real value to pharma firms is knowing the identity of users so they can create an in-depth profile, for instance of a patient with a particular long-term condition and their particular circumstance.
Sounds like an impasse. One solution is suggested to Mobile Health Live by Mark Brincat, director of product strategy with Exco Intouch, a specialist firm that enables pharma companies and research organisations to collect data from participants’ mobile phones during clinical trials. Exco recently signed an agreement to work with Vodafone in this area.
Brincat outlines a possible structure whereby drugs firms could approach individual patients through an independent gatekeeper who would see the request delivered but maintain the recipients’ anonymity. The default setting for patients would be anonymity. A kind of data exchange, this third party would “put in place the controls that are needed,” says Brincat.
“The approach requires a neutral party who acts as a go-between for health providers as well as their patients and commercial organisations,” he says. The kind of body with the right expertise he suggests are IT companies whose business is handling APIs and firewalls.
Big Brother Watch’s Carr says an independent gatekeeper could work but says it should not be drawn from the private sector but rather be a body along the lines of the UK’s Information Commissioner’s Office, or ICO.
Carr also argues the whole process in the UK of offering patient data should be opt-in and not shift to an opt-out as envisaged by the Prime Minister. She envisages a system that is loose and voluntary, rather like the existing approach to organ or blood donation in the UK. “Medical records are personal and private. They are not the government’s to give away as they please,” she says.
And bear in mind, it’s not just a question of creating safeguards but also communicating that concept successfully to users. It only takes one lost laptop on a train and public fears would escalate. Mobile technology might not supply an answer here. In fact, mobile technology can sit on both sides of the argument. Either way it is now part of the debate.
The editorial views expressed in this article are solely those of the author(s) and will not necessarily reflect the views of the GSMA, its Members or Associate Members.