LONDON Jan 13 Britons who refuse to share their
medical records with scientists and drug companies may be
putting lives at risk by making it difficult for researchers to
spot emerging potential health problems, medical charities said
In an appeal to more than 50 million people using the
National Health Service (NHS) in England who are being asked if
they'd like to opt out of sharing data, researchers said the
valuable information could be used to track causes of disease,
detect infectious outbreaks and monitor the safety of drugs.
"Locked inside our medical records is a mine of vital
information that can help medical scientists make discoveries
that can improve patient care and save lives," said Peter
Weissberg, a professor of cardiology and medical director at the
British Heart Foundation charity.
Jeremy Farrar, director of the international health charity
the Wellcome Trust, described the NHS - funded by taxpayers and
one of the world's most comprehensive health services - as a
"unique and incredibly valuable resource for research" that
would be impossible without such large, detailed sets of data.
The charities' call comes as the British government is
sending leaflets to 22 million households to explain a change in
the way information from medical records will be collected from
clinics where patients visit family doctors.
Under the changes, researchers in academic institutions and
the pharmaceutical industry will be able to access anonymous and
non-identifiable patient data.
But patients are also being given the right to opt out if
they object to their data being stored in a central repository
and accessed by researchers.
There is concern among some doctors and campaigners that the
information can never be totally secure and may fall into the
hands of hackers or others seeking to sell it to health insurers
and drugs companies to target patients.
But Sharmila Nebhrajani, chief executive of the Association
of Medical Research Charities, said that as long as people are
confident their data will be treated with care, competence and
consent, most will be "willing to make the public spirited act
of sharing their medical records".
Farrar and others argue that access to comprehensive health
data from the entire population will speed up the development of
new drugs, and highlight more swiftly any risks from medicines
or certain lifestyle habits.
In the 1950s, health data played a major part in uncovering
the link between smoking and lung cancer. And more recently,
data of children with autism born since 1979 in eight UK health
districts helped scientists establish there is no link between
the measles, mumps, rubella (MMR) vaccine and autism.
"With the correct and necessary safeguards in place to
assure public confidence, our patient records will provide a
rich source of important data that can help researchers develop
much needed treatments and interventions that can improve and
even save people's lives," Farrar said.
(Reporting by Kate Kelland, editing by Rosalind Russell)