Cameron says all NHS patients should share their medical data for research

By Dr. Ananya Mandal, MDDec 6 2011

According to British Prime Minister David Cameron, every NHS patient should be a “research patient” with their medical details “opened up” to private healthcare firms. The PM announced that all those who use the NHS in England will be helping in the fight against disease by helping advance research. He hopes the result will be that patients get faster access to new treatments and Britain's life sciences sector will become a world leader.

In a speech in London Mr Cameron said he would consult on changing the NHS constitution, which governs how the health service is run, so that all patients' data is used for medical research unless they want to opt out. He added that three million patients with chronic illnesses like diabetes or heart conditions are to get hi-tech equipment to monitor their health at home. The Prime Minister said it was “simply a waste” to have a health service like the NHS and not to use the medical data it generated.

“Let me be clear, this does not threaten privacy, it doesn't mean anyone can look at your health records, but it does mean using anonymous data to make new medical breakthroughs. The end result will be that every willing patient is a research patient and every time you use the NHS you are playing a part in the fight against disease at home and around the world,” Cameron said.

The life sciences industry is already worth £50bn a year and employing 160,000 people - because of the expertise within the NHS and its strong university-based research. “The end-game is for the NHS to be working hand-in-glove with industry as the fastest adopter of new ideas in the world,” Cameron said. That would act as a “huge magnet to pull new innovations through, right along the food-chain - from the labs, to the boardrooms, to the hospital bed.”

The announcement came as the Prime Minister unveiled a range of measures designed to boost Britain's pharmaceutical industry, encourage medical breakthroughs and get life-saving drugs to patients faster.

The measures include “tele-health” drive that will allow vital health checks to be carried out and sent electronically to GPs without the need for patients to make an appointment or visit a clinic. “We've trialled it, it's been a huge success, and now we're on a drive to roll this out nationwide…The aim - to improve three million lives over the next five years…This is going to make an extraordinary difference to people. Diabetics taking their blood sugar levels at home, and having them checked by a nurse…Heart disease patients having their blood pressure and pulse rate checked, without leaving their home,” he said.

However his move has also met with criticism. Critics say commercial interests are being put ahead of patient privacy. Patient Concern said it had real worries about the proposal to make patients' medical data available to private firms as the information would include postcodes and age profiles which would be possible to trace back to the individuals concerned.

Joyce Robbins, Patient Concern said, “The methods of doing this are not at all acceptable…The aim is laudable...but the methods, they stink frankly…Our records should not be passed around by the Department of Health as they see fit or sold to private companies without our permission.” Data should only be made available on the basis of patients' “informed consent”, she added.

Labour has said it will not allow Mr Cameron to “throw away essential safeguards” in his desperation to develop a credible industrial strategy. Shadow Health Secretary Andy Burnham said, “That gives real cause for concern and rings alarm bells. The Government simply can’t say: 'This is all red tape and it all must be brushed away'. Proper regulation, essential safeguards need to be in place when it comes to the use of patient data.”

But the pharmaceutical industry said “robust” safeguards were already in place and it was impossible to trace back anonymized data to individuals. “We need people to understand that the benefits for all of us - our children and people who have got illnesses - are absolutely essential when it comes to using health records for research,” said Neil Patel, from the Royal Pharmaceutical Society. He added that the NHS data could help in furthering understanding of conditions such as HIV and lung cancer.