Life-saving medical research strangled by red tape delays, charity claims

The British Heart Foundation, which funds £100m of medical research a year, wants the NHS to open up its data to scientists that it funds at universities and hospitals across the UK. The charity says researchers experience long delays in gaining permission to access NHS data, face uncertainty about the rules governing the process of approval, and deal with an overly-complicated system that can slow potentially life-saving discoveries.

Figures show three quarters of adults surveyed by the British Heart Foundation remain unaware the information held in medical records has helped with the development of new treatments.

The figures also show that the public is supportive of information from medical records being used in research, with nearly 75 per cent happy for their doctor to share some information about them with health researchers to in order to help develop new treatments.

The charity’s medical director, Professor Peter Weissberg, said: “Medical records from people all over the country could help us in the fight against heart disease.

“While data protection is clearly an important issue, the researchers we fund say they are caught up in unnecessary and inconsistently applied red tape that slows them down by months or even years, and costs them more in staff time and paperwork.”

The charity said access to data in patients’ medical records is a crucial step towards saving more lives from heart and circulatory disease, which claims around 191,000 lives every year.

The types of information that could help scientists make important breakthroughs include details about what medication patients take, what conditions they have been diagnosed with, or when and why they are admitted to hospital.

The charity wants clear legal guidance for researchers, a single approval process to access patient data and a workable system for using records to find patients to take part in trials for new treatments.

It said early access to patient details could help pick up unexpected side effects of drug treatments and help the search for substances which could be used to predict heart attack or stroke.