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Minutes
of the Patients Forum held on 16th March 2005 in the Gandhi
Room at the YMCA Indian Students Hostel,
Fitzroy Square
,
London
W1.
Present:
Jonathan
Ellis, (Help the Aged); Brian McGinnis (L’Arche UK); Geraldine Amos
(Home from Hospital Care); Mike Took (Rethink); Beverley Beech (AIMS);
Gerda Loosemore-Reppen (Sign); Ros Meek (Royal Society of
Medicine); David Wingley (BMA) In Attendance: Diana Basterfield
(Patients Forum)
Apologies:
Elizabeth Manero (Health Link), Carol
Herrity (Royal Mencap), Hew Helps (Chiropractic Patients Association),
Moira Fraser (Mind), Angeline Burke (NMC), Libby Halford (Childhood
Eye Cancer Trust), Catriona Moore (LMCA), Philip Hurst (Age Concern
England
)
Minutes
The
minutes of the meeting held on 12th January 2005 were
agreed.
Chair’s
report
It
was reported that the Patients Forum Conference on 22nd
February had been well attended and the evaluations returned had been
positive.
It
was announced that a seminar would be held on 7th April
2005 with Meredith Vivian from the Department of
Health. The theme was: Progress Report on Patient and Public Involvement.
There
were no questions or comments on the Minutes of the Patients Forum
Management Committee meeting held on 12th January 2005,
circulated with the agenda.
The Freedom of
Information Act and its impact on health services
Speakers:
Maurice Frankel (Campaign for Freedom of Information)
Sue Markey (Information
Commissioner’s Office)
John Grenville (British Medical Association)
Maurice
Frankel:
“We
are ten weeks into the Freedom of Information regime.
I’ll give some characteristics of what the regime is.
First, we have three new laws or rather three new rights that
have come into force: the
right of access to freedom of information held by public authorities;
the right of access to environmental information, which is exempt
under the FOI but covered by a separate set of environmental
regulations, and an improved right of access to personal data under
the Data Protection Act for information held by public authorities.
It doesn’t affect access to health records, which is already
at a relatively high level of access but it does significantly improve
the right of access to most other records, for example to the health
records held by people who are not health professionals.
What
we have got is an enormously wide scope of the legislation.
It applies to central government, it applies to local
government, it applies to the NHS, to quangos and regulators, the
armed forces and the police. One
of the things it means is that we have no distinction between health
bodies and the bodies they work with.
They are all subject to the freedom of information, so social
services is covered, the private sector is not covered but more or
less every other sector is covered down to the individual GP.
The regulatory bodies like the GMC are covered, all the
advisory bodies, the drug licensing system, the Human Fertilisation
and Embryology Authority covered, the Health Service Ombudsman is
covered, so a very, very wide range of bodies is covered.
As long as the information is recorded it is subject to the Act
and it doesn’t matter who created it. There could be information on
someone’s file that has come from another public authority.
The authority that holds it has got to deal with the request,
even if they didn’t create the information and would find it more
convenient to pass the request on to the people who generated the
information.
The
Act provides practically the simplest regime I know for applying for
information. If you go to
some countries you have got to get the approved application form
before you can make a freedom of information request.
You just need to make your request in writing or by email.
You can send it to whomever you want to in the authority; there
is no requirement to send it to a specific and FOI person.
Environmental requests don’t even have to be written, they
can be oral. If
somebody is very unhappy with the level of information, they can wait
outside the Chairman’s front door and doorstep him when he comes to
get his milk bottles in the morning and make a valid environmental
information request. The
definition of environmental information is very broad and it would
certainly cover a reasonable chunk of information about health
matters. It would
cover information about environmentally transmitted diseases,
infections like Legionnaires’ Disease, foot and mouth, any disease
that was transmitted through the air or water, ‘flu, common colds,
etc. Most contagious diseases (excluding sexually transmitted
diseases) come under the environmental information regime, which in
some ways is a more demanding regime or more powerful regime as far as
the applicant seeking the information is concerned.
Authorities
are under a duty to advise and assist, which means that they are not
supposed to rely on the applicant’s lack of insight into how the
records are held, how the system works, who holds what, who doesn’t
hold what. This is the
“anti bugger off” position in the legislation, in other words for
officials who would really like to say “you have asked for more
information than you are entitled to, bugger off” actually they
can’t, they have to say “this is how you can make your request for
information more manageable. You’ve
asked for information that we don’t hold, somebody else does,
there’s an onus to help you out, to tell you, if the authority
knows, who it is who holds the information, who to request it from.”
There
is a requirement to respond promptly, and in any case within 20
working days, subject to an exemption where requests have to be
considered under the Act’s public interest test.
This is a key bit of the legislation because it means that
although there are a very large number of exemptions, some two-thirds
to three-quarters of them require the authority to consider whether
disclosure is in the public interest or not.
It is not enough to establish that the information is exempt;
they also have to ask whether the public interest in keeping it
confidential outweighs the public interest in disclosure.
Basically,
the applicant can ask for up to £450 worth of work for the authority
to do, 18 hours it is calculated, before it can be refused on cost
grounds. Those costs
can’t be passed on to the applicant, apart from the costs of
photocopying and postage.
It
is very user-friendly, you don’t have to know anything about your
rights, you don’t have to mention the legislation you are applying
under, the onus is on the authority to recognise your requests as a
FOI or an environmental information request and deal with it.
We
will have to wait and see what the public interest test is going to
bring with it. I think
some of the examples from overseas FOI regimes suggests that it is
very powerful, particularly where there is risk to the public, where
there has been malpractice on the part of the public authority, where
there has been dishonesty on the part of the pubic authority, where
there has been significant failure to follow its own procedures and
where there has been unfair treatment of individuals or injustice to
individuals. All these
types of things will make it harder for authorities to justify
withholding exempt information.
Public interest is going to tend to lead to disclosure.
Some interesting cases from
Ireland
, which has had FOI since 1997. Somebody
died in a private nursing home. The
local authority inspected the nursing home, the brother of the person
who died wanted to see the inspection report and this was commercially
very damaging to the owner of the home because it showed substandard
performance. Despite the
fact that there is exemption for information that is financially
damaging, public interest is seeing that the authority is doing it
job, it’s seeing what is going on in the home and this outweighs the
commercial part, so this report was disclosed not just to the family
but publicly.
I
think what we are going to see is a ratcheting up of disclosure across
the board because what we assume is that it is one system and all
these three bits of legislation are going to one body.
I think what we are going to see here is that one authority is
forced to cough up and the message will go out that all authorities
will be forced to cough up.
As we saw with access to medical records and health records ten
years ago, those practices that on their own initiative, because they
believed it was a good idea to do, helped to clear the way by
demonstrating that it wasn’t harmful.
I’m
just going to say a little bit about what we have seen come out so
far. Central
government has been advised to have what’s called a “disclosure
vault?” They put
on their websites incidents and descriptions of the significant
information that they have released to requesters and make it
available to everybody simultaneously. This
is a very positive thing. The
one person who digs out anything significant but doesn’t have the
ability to communicate it to the world at large, the information is
put on the authority’s website so we all get the benefit from it.
This is very, very helpful in letting us see what is going on.
We can see on the Department of Health’s website that they
disclose a list of private sector contractors who are cleaning
hospitals. So you
can see who has bagged the jobs where and you know that if someone is
performing badly, you know the percentage of the health service they
are likely to be leaving uncleaned.
The
rates of PFI returns in NHS hospitals are now published on the
Department of Health website. On
the Ministry of Defence website there is a list of UFO reports, a very
interesting piece of information.
Midlothian in
Scotland
is particularly active for UFOs.
We have seen details of complaints about harassment against
military personnel, complaints about low flying aircraft.
In other departments we have seen parking fines by streets in
Birmingham
. There is a stretch of
street that collects one third of a £million in parking fines per
annum. People who park
carelessly in that stretch of
Birmingham
are doing the local authority a great favour.
We have seen that one authority has had 200 applications for
mobile phone masts. At
Dounray information is coming out now about the hotspots of
contamination. Trusting
people thought that Dounray were keeping these things under control
but recent evidence shows where these are turning up on the
beach. We have
seen the breaches of security at nuclear power plants; people allowed
to walk in without any authorisation and without even having an
appointment; we have seen people trying to get in with forged
documents. In
today’s Guardian there is information about cardiac surgeons’
success rates.”
Sue Markey, Policy
Manager, Information Commissioner
The
Act
•From
1 January 2005
•Applies
to public authorities but has implications for the private sector
•Establishes
a statutory right to information
•Sets
out exemptions from that right (23)
•Provides
for the release of exempt information in the public interest
Requests for Information
•Must
be in writing
•Name
of applicant
•Address
for correspondence
•Description
of information requested
•No
reference to the Act
•Worldwide
application
Right
to Information subject to:
•Fees
•Vexatious
or repeated requests
•Further
information provided
•Exemptions
Public
Authority Duties
•To
confirm whether it holds the specified information
•If
so communicate that information
•Respond
‘promptly’ within 20 working days (subject to limited exception)
•Duty
to provide advice and assistance
Exemptions
to the Act
Can
be either ‘absolute’ or ‘qualified’
Absolute
•No
right of access under FOI
•Other
means of getting access to information e.g.: under other statutes
Qualified
Exemptions
•Subject
to ‘The Public Interest Test’
A public authority must disclose the information unless the
public interest in maintaining the exemption outweighs the public
interest in disclosure
What
is in The Public Interest?
A
flexible approach which may include:
•Promoting
public debate of issues of the day
•Promoting
accountability in decision making and public expenditure
•Allowing
individuals to understand decisions and challenge them
•Information
affecting public safety
Environmental Information Regulations
•Also
came into effect on 1 January 2005
•Are
significant differences
•Issues
likely to be dealt with under the EIR include cleanliness of hospitals,
rates of infection and MRSA
•ICO
Guidance, information and a dedicated email enquiry service is available
on the ICO website
The
Role of the ICO
•Approve
Publication Schemes
•Promote
Good Practice (S47) and contribute to building trust between the public
and public authorities and increased participation in the democratic
process
•Statutory
duty to apply the Act
•Consideration
of complaints and enforcement of decisions
Regulatory
Powers
•Decision
Notice (S50) – the formal determination of complaints
•Information
Notice (S51) – formal requests for the supply of information to the
Commissioner
•Enforcement
Notices (S52) – binding notices served by the commissioner on public
authorities
Regulatory
Powers
•Practice
Recommendations (S48) – non-binding recommendations in relation to
conformity with the Access and Records Management Codes of Practice
The
Year Ahead
•The
FOI Department
•Sectoral
Approach
•Development
of Casework
•Development
of Awareness Guidance
Further
Information
Information Commissioner
Wycliffe
House
Water
Lane
Wilmslow
Cheshire
SK9 5AF
Tel:
01625 545 700
_________________________________________________________________________
John Grenville
(British Medical Association)
“I
am mainly going to concentrate on primary care as that is the sector I
come from. I can’t say a
lot about hospitals and strategic health authorities and so on.
I am going to concentrate on clinicians because I am a clinician
and I would say in general terms that we welcome this Act.
Giving out information is what we do anyway, that’s what a
consultation is about. A
consultation is the cornerstone of what we do.
We don’t have a lot of problems with this Act, we have some.
Certainly I am finding it helpful just to be here this afternoon
to hear the discussion and, particularly to hear what Sue has had to
say. There are
tensions, I think, between the Freedom of Information Act and the Data
Protection Act and I think many authorities are going to find that quite
difficult. I
think doctors are going to find it less difficult because we are used to
dealing with personal information. We
are good at it. We have a
code of ethics around personal information.
I am going to talk a little bit more about that in a minute.
We can identify personal information.
We know what it looks like and we will deal with it under the
Data Protection Act as we have been doing.
It
is also interesting in the General Practice setting to think about the
information we hold. In my
practice as a training practice for young doctors, we get reviewed every
two or three years and we have to put all our protocols, our information
about how we do things, out for the Inspectors to have a look at.
We have a large table in our common room.
It is about the size of three of these trestle tables.
We put all this information out
on it and it covers the whole thing and it’s pretty much what we’ve
got and what we can make available to people.
Contrast that with the rest of the information we hold, which is
people’s medical files, which occupy two extremely large hard disks,
with their backups and about 150 metres of shelving.
So the amount of information that we think will fall under the
FOI is only a small part of the information we deal with.
I think as clinicians we don’t see huge tensions there but we
do see some other public authorities who haven’t got used to this
division having difficulties with that.
I
said that I would talk a bit about the way we deal with personal
information. Our
fallback default position has always been that personal information that
is given to us in the course of a clinical encounter is confidential
‘unless’, and the ‘unless-es’ are few and far between.
They are if we have a statutory duty to disclose, if clearly the
public interest is served by disclosure or if the patient gives us their
consent to disclose. Now we
actually have a problem that in the new modernisation of the NHS, the
National Programme for Information Technology, which is a huge push
within our service at the moment, there is a tendency to say that
information which exists within the health service, exists within the
health service and must be shared whenever necessary.
And who judges when it’s necessary?
Well, the people who are asking for it to be shared or the people
who are sharing it seems to be the answer at the moment.
I am actually quite worried about the extent to which people’s
personal data are going to be shared in future.
There
are hugely good reasons for sharing this data.
We can improve people’s care immensely by sharing the data
properly but I don’t think that on its own is enough to let us go
ahead and do it. I
don’t think we’ve had a public debate on that yet and I think we
should. It’s not for
us to say, it’s not for the politicians to say, it’s certainly not
for the anoraks in the NPIT to say, I think it is for the public to say
how it wants its personal information using and that debate hasn’t
even started yet.
We are several billion pounds into this programme and they are
talking about it being complete soon and we haven’t had this debate.
This was something I thought I’d flag up while someone from the
Information Commission was here.
We
did talk briefly about resources. Yes, this is an important Act.
It may well produce a lot of work for a lot of people within the
public sector. Certainly within our bit of the public sector it has not
been resourced. I suspect it
hasn’t been resourced in many other bits of the public sector either.
I suspect that politicians have said it’s just part of the
baseline, that it has to be absorbed.
I’m not happy about that. I
think the FOI Act would work better for the public if the public purse
actually financed the work that is going to go into making it work
properly. In other words, I
think the Treasury should be handing out some money for people to get on
with this and do it properly rather than cutting corners, looking for
excuses and, in some instances saying:
“OK, we’ve got to do this. If we don’t we’ll be in
trouble with the Information Commissioner.
Which bit of patient care can I cut today in order to complete
this FOI Act application?
We
haven’t got the resources that we need to handle this Act properly and
it is the same with the Data Protection Act.
We’ve seen that over the last ten years. Yes, we did our
publications schemes, very helpfully the Commissioner’s office and the
NHS Information Authority – which has now been disbanded – helped us
and a model scheme was developed (and I was involved with that).
It was put on a website and practices were encouraged to get hold
of the model scheme, to complete it for their practice and put it on the
website so that it was in the public domain and everyone could reach it.
That’s fine and my hope and expectation is that the vast
majority of practices did that by October 2003 – the deadline.
I’m sure they did. I
know my practice did.
Yes,
we did forget about it for a few months but then we realised that the
implementation date was coming up so we thought we’d better go back to
that and have a look at it and update it.
Well, all the practices that I know that have tried that have
been unable to gain access to their publication schedule on this central
website in order to update it, largely because the NHSIA and its
particular arm that was going to help us with this has been disbanded.
We have talked to the PCTs, we have talked to the strategic
health authorities, we have talked to the Information Commissioner’s
office, we have talked to everybody.
This site seems to be locked down.
How do we update our publications schemes?
We want to implement this act and there are obstacles in our way.
It is going to be a particular problem for those practices that
have changed their email addresses, which many of them are doing because
the NPFIT is encouraging practices to move to the NHS Net.
So many practices, since October 2003 changed their email address
so even if we find our way into the site it is not going to recognise
them when they get to it.
To
move on to uses to which the Act may be put.
It is interesting that Sue said she had had a surge of enquiries
from PCTs about aspiration payments all in one week.
I know exactly why that is. It
is because there is a firm in
Kent
which has written to every PCT in the country asking for that data
because they are a firm that thinks there is a market in developing some
software to help practices with low aspiration points to aspire higher.
That is one of the uses to which this Act is going to be put.
People are going to use it for their own commercial purposes.
There is an organisation that was set up some years ago by the
pharmaceutical industry in this country.
It is an arms-length organisation until you start looking at it
carefully you don’t realise that it is part of the pharmaceutical
industry but it has written round to all the PCTs as well with about a
ten page document asking for information on certain drugs and groups of
drugs and their usage within each PCT.
It has looked at the Act very carefully and defined exactly what
it wants, the format in which it wants I - which is a computer programme
that I have never heard of (and I hope that the IT departments in the
PCTs will know). It is clearly a format that will enable them to look at
the usage of these products and, I assume one of the uses to which they
will put that information is to improve their marketing strategies.
I think the commercial use is going to grow and grow and grow.
There
are the legal uses. One of
the biggest problems we’ve had with the Data Protection Act over the
last ten years is that in most practices we have surveyed, over 90% of
applications for personal data under that Act come in the form of a
letter from a solicitor saying: “I
act for Mrs X and she requests that you give me her file.”
We do so, under the DPA, for which we can charge £10 -
if it is all on compute - and up to £50 if it is partly written.
That fee will come down in due course, there’s a working party
looking at it. All that data has to be scrutinised to ensure that there
is nothing harmful, unusual, or no third party references – which is
common. That work has to be done.
We have then heard of solicitors’ firms then actually pass on
in their fees ‘to obtaining your medical records £150’ and they are
doing it on a contingency fee basis anyway.
We
suspect there will be some requests for our protocols – how do you
normally treat diabetic patients – when there is a complaint about a
diabetic patient who feels they were treated incorrectly.
We will deal with it but we think that the legal profession will
probably take advantage of the fact that they can charge but we can’t.
We
have some concerns around league tables.
We have, under our new contract, something called the Quality and
Outcomes Framework which is the first and, I think, the first and only
one of its kind in the world. We
are well ahead of the rest of the world here and for the first time we
are going to get our hands on really good data about the quality of
health care and people’s outcomes.
Each practice aspires to a certain number of points each year and
at the end of the year it gets paid for the number of points it has
achieved. The sort of thing
that you get points for is: “Of
your diabetic patients, what percentage of them have actually had their
blood sugar measured in the last year?”
If you have done 90% of them you get quite a few points and if
you have done 10% of them, which is poor quality medicine, you get no
points. By looking at
the points that practices have got you can build up a league table but
it is like the cardiac surgeons. If you practice in an area with a high
proportion of patients originating from the Indian sub-continent, you
are going to have a lot more diabetics than if you don’t because they
are prone to developing diabetes.
You therefore have a lot more work to do to hit the targets
within your diabetic population; you’ve just got more blood tests to
do and more treatment to give. Again, it is important that we put the
numbers of points achieved in context.
We hope that this is going to be dealt with by the Department of
Health who have instructed one of their agencies to set up a website
that will deal with everybody’s Quality and Outcomes Framework across
the country. We hope that
will be in use after the first outcome of the QOF on April 1st
and that will put various people’s achievements into context.
The
other area that I think is causing some concern is around financial
data. Clearly as public
authorities we are going to have to, and we should, be making it clear
to people how we spend the public money that we are given.
That is not a problem but in general practice what happens is
that the public money comes down, we spend a certain amount of it
providing services and what’s left is the practice profit.
That’s how we are paid. We
are not salaried, many of us, we run as a small business. We are
so-called ‘independent contractors’ to the NHS so if we are asked
questions like “How much money did you get this year?” “How much
money did you spend on providing patients’ services this year?” then
someone can work out your income. Not a problem, you may say.
Within the public services and, indeed, within the commercial
sector we know how much the Managing Director or the Chief Executive is
paid because we look at their annual reports and it tells us within a
band of £5,000. What do we
do when we are asked: “How
many receptionists do you employ and what do you pay them each?”
Do we make those data available to the requester or not?
I don’t see any reason why we shouldn’t but we live in a
society where historically people have kept their incomes private in
general terms. Our staff
might be upset. We might be
able to persuade them that (a) we have no option and (b) who is it going
to hurt? But I think it is
going to be a long and difficult persuading process.
There are still many, many people in this country who think that
their income is private to them. I
hope that maybe the FOI Act will be part of a change in the way people
think in this country but I’m not banking on it just yet and I am
banking on a few upsets, concerns and worries.
Sue
mentioned the twenty-three exemptions and when I’m in a cynical frame
of mind I simply feel that at least twenty-one of those exemptions were
written in order to save Ministers from embarrassment.
I am sure there are other reasons!
I am interested in the advice you are going to give Sue on
personal records of deceased persons, that is something we would love to
know the answer to.”
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