Should we have more access to our medical records?

Patients should be given “full and unfettered” access to their medical records, Norfolk MP George Freeman will tell parliament today as he calls for a change in the law so patients own their own medical data.In a Ten Minute Rule Bill the Mid Norfolk MP will call for patients to be able to hand their medical data over to researchers to help drive new treatments for hard-to-cure diseases like Alzheimer’s and cancer.

His bill is supported by more than 50 UK medical charities including the prostate cancer campaign group Movember, Marie Curie, the Cystic Fibrosis Trust, and a number of leading research doctors.

George Freeman MP said that patient records were too often sitting on hospital shelves gathering dust – allowing failed treatments to be repeated over and over without anyone gathering the evidence to see what works and what fails – and why.

He said: “Allowing patients to have access to their records will make it much easier for patients to see and understand their – and their loved ones’ – condition and treatment, and make it easier for patients to enrol in trials.”

“Access to our patient data will also empower patients to improve our own health. We could, for example, plug our data into apps and software programmes that will interact with our diet and lifestyle information and family history and allow us to better understand and moderate and change our behaviours to drive better health outcomes.”

He said it was essential that doctors updated medical records and handed them over to other NHS and social care professionals.

He said: “At the moment, an elderly person can be treated in hospital and moved into care without their medical records which do not travel with them leaving their carers blind to their medical history.

“And then when, inevitably, many fall ill in care and are returned to hospital, their treatment in care is not recorded, leaving hospitals to guess what has happened to them.

“It’s a massive drop-the-ball moment which often leads to poor treatment and premature death,” he added.

He said: “Britain can once again be the crucible of medical innovation. We lead in the field of genomics and with the NHS we have potential access to the greatest generator of medical data in the world. Putting the two together would lead to an explosion in new medical treatments in the UK, with massive benefits to patients.

“But as things stand, innovation has all but stalled. Big pharma is failing to deliver, the NHS does not properly collect patient data that can be used for research and patients are too often cut off from being able to access research and new treatments which happen ‘to them’ as opposed to ‘with them’. The opportunities are huge if we get this right. Patient data should be available to researchers to cure diseases.”