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Page last updated at = 10:28 GMT,=20 Friday, 5 December 2008

E-mail this to a = friend

Printable version=20 =

Who is looking at your medical records? =

By Brian Wheeler=20
Political reporter, BBC = News=20

The idea of people you have never met before leafing = through=20 your medical records would make most people a little = uneasy.=20

3D"Jackie =20
Jackie Bird was alarmed to be told = her medical=20 data had been = accessed

Even if the people in question are highly qualified = health=20 professionals.=20

With the possible exception of your bank account details, = medical=20 histories are the most sensitive - and potentially = embarrassing -=20 examples of personal data held by the authorities.=20

Yet more people than ever before are being allowed access = to them=20 - and it is raising serious concerns about confidentiality.=20

This week, in Scotland, seven BBC journalists were told = that=20 their medical records had been inappropriately accessed by a = unnamed=20 doctor in Fife through a new central database.=20

"I wondered why NHS Fife was getting in touch with me and = as I=20 read the letter, which was obviously intended to allay = fears, the=20 more fearful I became," said newsreader Jackie Bird.=20

"It was a strange feeling that someone unknown could have = accessed my private information."=20

The doctor, who has not been identified, is facing = charges=20 relating to an allegation that he misused access to NHS = electronic=20 records.=20

The records in question were not part of the = controversial and=20 much-delayed new NHS computer system, which has previously = been the=20 focus of concerns about patient confidentiality, but a = little-known=20 new database aimed at improving emergency care.=20

An Emergency Care Summary is held on a central database = so that=20 it can be accessed quickly by out-of-hours doctors and A = & E=20 departments.=20

Public support=20

A tiny proportion of GP practices have uploaded patient's = data on=20 to the system so far but the NHS is working towards = compiling a=20 summary for every person in Scotland.=20

A similar scheme is planned for England, with national = roll-out=20 expected to begin in 2009.=20

Advocates of it say there is public support for data = sharing=20 among medical practitioners and patients worried about=20 confidentiality can keep their details off the system.=20

3D""

3D""=20 Is it too much to ask that = information=20 about our health is used to benefit future = generations?=20 3D""=20

Mark Walport
Wellcome=20 Trust

In any case, they add, the database just contains basic = details=20 such as names, ages, addresses and current medication.=20

There is, perhaps, more concern about proposals being = considered=20 by the NHS in England for patients' entire medical history = to be=20 made available to selected researchers.=20

The Department of Health wants to allow medical = researchers to=20 write to people suffering from certain conditions to ask = them to=20 take part in medical trials - and to open up everyone's = records,=20 with names, addresses and other identifying data removed, = for=20 statistical analysis.=20

Medical records are a potential gold mine for = researchers,=20 advocates of the plan say, a massively under-used resource = that=20 could be harnessed to fight killer diseases such as cancer = in a way=20 that would benefit us all.=20

'Undermine trust'=20

Dr Mark Walport, of the Wellcome Institute, recently told = the=20 Guardian: "Is it too much to ask that information about our = health=20 is used to benefit future generations?"=20

But Harry Cayton, head of a new watchdog on the use of = NHS data,=20 wants more thought to be given to patient confidentiality in = the=20 plans.=20

"When we give our health information to the health = service we do=20 it on a basis of trust and we assume our health information = will=20 only be used by the people who provide us with care," he = told BBC=20 News.=20

3D""

3D""=20 Once you have sent someone's = records to=20 The Sun you can not take them back again, whatever the = penalties 3D""=20

Harry Cayton
NHS data=20 watchdog

"It will undermine people's trust in the health service = if we=20 open up health records to an enormous range of people who = may have=20 no duty of care to the person whose records they are looking = at."=20

He is also concerned that private medical information = could "get=20 into the wrong hands" under the scheme, which is contained = in the=20 proposed NHS constitution.=20

If people are sent letters without warning asking them = take part=20 in clinical trials, it could compromise their privacy, = especially=20 if, for example, they have not have told their partner or = other=20 family members they have a particular medical condition.=20

People who live in multi-occupancy homes, such as = students, or=20 young people who have not told their parents they are = suffering from=20 a particular condition might also be at risk, argued Mr = Cayton.=20

"If people want to take part in research then that's = fine, but to=20 assume they somehow have a duty to take part I don't think = is=20 necessarily appropriate. I am not sure it is the best way to = achieve=20 the outcomes researchers want.=20

"I am not saying these problems are insurmountable. The = evidence=20 is that the public strongly support research but there is = also=20 evidence that the public want to be asked."=20

Tony Blair's son=20

There is also the danger that rogue researchers or = medical staff=20 will sell information in medical records to newspapers, or = anyone=20 else with an interest in getting hold of it.=20

"Once you have sent someone's records to The Sun you can = not take=20 them back again, whatever the penalties," says Mr Cayton, = who is=20 chairman of the National Information Governance Board for = Health and=20 Social Care.=20

Imagine how much money, he says, someone could have made = from=20 selling the medical records of Tony Blair's youngest son, = Leo, when=20 he was at the centre of a row over whether he had been given = the MMR=20 vaccine.=20

3D"Leo =20
Will public figures receive special=20 protection?

The government has not ruled out giving special = protection to the=20 medical records of MPs and other public figures - their = names and=20 addresses have already been removed from the new Contact = Point child=20 protection database.=20

But that, argues Mr Cayton, would undermine confidence in = the=20 system still further.=20

"If it is not good enough for everybody, then it is not = good=20 enough for anybody. Some people's records should not be more = confidential than others.=20

"If they say confidentiality is 100% safe, then it should = be the=20 same whether you are a celebrity, a politician, a doctor, a = nurse or=20 an ordinary member of the public. That is essential if you = want the=20 public to have confidence in the system."=20

'Safe havens'=20

Dr Walport argues that confidential medical records = already flow=20 freely around the NHS - and it is down to medical = secretaries, who=20 take down dictation from doctors, and other members of staff = to keep=20 them confidential, something which is instilled into them in = training.=20

He is also backing a separate government plan to give = researchers=20 access to data from medical records, with the names, = addresses and=20 other identifying data removed, which is being proposed as = part of a=20 broader plan to increase data sharing between government = departments=20 and agencies.=20

In a review of the data sharing plans, Dr Walport and the = Information Commissioner, Richard Thomas, called for the = setting up=20 of electronic "safe havens" for medical researchers where = the risk=20 of identifying individuals from statistical data can be kept = to a=20 minimum.=20

3D""

3D""=20 Research is one of the main = ways the NHS=20 can improve health care 3D""=20

Department of = Health

The idea was backed by the government in its official = response to=20 the review, with the health department saying it wanted to = follow=20 the lead of the Office for National Statistics, which allows = researchers, including pre-vetted PhD students, to see = unpublished=20 economic data gathered from companies and individuals .=20

The data is "anonymised" and researchers are vetted by a=20 committee, the Microdata Release Panel, before being allowed = to=20 access it on a remote computer terminal called the Virtual = Microdata=20 Laboratory (VML).=20

But the system, like any large database, is not = foolproof. In=20 April this year, the VML in London had to be closed for = about six=20 weeks after security flaws were discovered, which would have = allowed=20 unscrupulous researchers to work out the identity of = individual=20 companies from the anonymous data held on the system.=20

Students=20

The ONS said there was no evidence that anyone had tried = to do=20 this or even knew about the potential loophole. It was = discovered=20 during routine checks ahead of an office move and the fact = that it=20 had been identified and fixed demonstrated the = organisation's=20 commitment to security, a spokesman said.=20

3D"Doctor =20
Should access be restricted to your = own=20 GP?

The Department of Health wants to set up its own "safe = havens"=20 for "approved researchers" and is in the process of = consulting on=20 guidelines to prevent personal and confidential medical = information=20 from being identified by them.=20

A Health Department spokesman said: "Research is one of = the main=20 ways the NHS can improve health care. We are committed to = improving=20 support for clinical research. DH welcomes the research=20 recommendations in the data sharing review.=20

"We want to make it easier for everyone to find out about = research.=20

"Patients tell us that they want to take part in research = which=20 is relevant to them and we are taking steps to provide = appropriate=20 opportunities whilst safeguarding against breaches of = patient=20 confidentiality and ensuring patient consent is obtained in = line=20 with the Data Protection Act."=20

As with most debates about data security, the two sides = appear to=20 be poles apart.=20

Many critics are fundamentally opposed to holding = personal=20 details on huge central databases at all, arguing that they = can=20 never be fully secure.=20

But medical practitioners are likely to see the risk of = an=20 occasional security breach as a price worth paying to gain = an=20 advantage in the war on disease or to improve patient care.=20

It will be down to the government, in the end, to decide = who is=20 right.

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