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MINUTES OF THE
PATIENTS FORUM MEETING HELD ON WEDNESDAY
13TH MARCH 2002 AT THE CONSUMERS’ ASSOCIATION
Present:
Clara Mackay – Chair (Consumers’ Association);
Alison Morris (Motor Neurone Disease Association);
Jonathan Ellis (Help the Aged);
Bill Kent (reMemember); Saranjit
Sihota (National Consumer Council);
Jayne Thomas (National Council for Hospice and Palliative Care);
Ruth Taylor (Haemophilia Society); Judy Wilson (National
electronic Library for Health); Wendy
Garlick (Consumers’ Association);
Nikki Ratcliff (Consumers’ Association); Rahana Mohammed (LMCA);
Nikki Joule (Neurological Alliance);
Micky Willmott (Age Concern);
Judy Walker (Help for Health Trust);
Karen Thomson (Diabetes UK);
Frances Presley (ACHCEW); Elizabeth Manero (London Health Link);
Marianne Rigge (College of Health);
Brian McGinnis (MENCAP); Eileen Neilson (RPSGB); Ruth Berry (Alzheimers
Society); Roger Battye (NAPP). Diana
Basterfield (Patients Forum) in attendance.
Apologies:
Geoff Braterman (Homeopathic
Society); Sue Thomas
(Health Promotion Wales); Sheila Dane (Stroke Association); Roger Steel
(Consumers in NHS Research Support Unit); James Appleyard (BMA); Imelda
Redmond (Carers UK); Francine Bates (Contact a Family); Jo Hampton
(GMC); Geraldine Amos (Home
from Hospital Care); Alyson Turner (Maternity Alliance); MikeTook (NSF)
1.
Speaker: Michael Thick – “Getting
patients attitudes to confidentiality”
See appendix
2.
Minutes of the last meeting
Correction,
page 2, on the NHS Reform Bill item, second paragraph “reduction”
should be replaced with “improvement.”
3.
Chairs report
Patients
Forum Annual Conference.
It
was reported that feedback had been very positive and the attendance had
been good. It had
been an interesting and challenging day all round.
The conference report was being finalised and would be sent out
very shortly to all members together with Christine Hogg’s report
“National Service Frameworks: Involving patients and the public.”
These would also be sent out to Ministers with an accompanying
letter.
Quality
Task Force
The
Chair reported that she had been appointed to the Quality Task Force and
would feed back to the
Patients Forum. It was also reported that Francine Bates had resigned
from the Quality Task Force.
Judy Wilson reported
that the agenda for the next meeting of the Quality Task Force included
a discussion about the Bristol Report and how culture change, as
envisaged by the Kennedy Report and endorsed by Ministers, could be
assessed and progress tracked.
Bill
Team
It
was reported that the Patients Forum had met with the bill team.
Elizabeth Manero reported that it had been a useful meeting.
Several key items were discussed including specialised
commissioning and access for patients forums to the private sector:
Elizabeth agreed to circulate notes from the meeting.
Transition
Advisory Board
It
was reported that Patient Forum members Marianne Rigge and Saranjit
Sihota are members of the TAB and Christine Hogg Project Manager. It was
also reported that papers and minutes from the meetings would be
available through a link from the Patients Forum website. Saranjit
reported that the TAB was chaired by Paul Streets – Chief Executive of
Diabetes UK - and there are fifteen members. There had been two meetings
to date, the first of a general, introductory nature, the second one
where they split up into three working groups – one looking at the
national body (chaired by Marianne Rigge, College of Health); one on the
Independent Advocacy Services (chaired by Imelda Redmond, Carers UK);
the third would look at CHCs and human resource issues (chaired by Alan
Hartley). The various groups were free in how they worked outside the
official TAB meeting times. At
the next TAB meeting there would be a discussion on how as a group, and
as individual groups, they worked with everybody else and that it was
not just a closed shop.
The minutes would be on www.doh.gov.uk/involvingpatients/tab.htm.
4.
Information exchange
Eileen
Neilson (Royal Pharmaceutical Society of Great Britain): It was reported that the RPS had responded to the Wanless Report. Comments
had been made about rational prescribing – a lot was not in the
report, statins,
mental health, drugs, dementia drugs, etc and it was felt that it was
important for these needs to be included for long term planning.
Their report on intermediate care would be published very
shortly.
Brian
McGinnis (MENCAP): It was reported that the Department of Work and Pensions had
improved the rules about hospital inpatient regulations as regards a
range of patient benefits. What
had not been changed was the rules applying to disability living
allowance, care allowance and attendance allowance.
There was an early day motion going down which suggested that if
there were ways under one set of benefits there should be ways of
extending these to other sets of benefits.
People involved in parliamentary activity were prompted to keep
their eyes open for the early day motion.
Roger
Battye (National Association for Patient Participation): It was reported
that their conference this year would focus on the benefits of patient
participation in primary care. It
would be held on Saturday 8th June in Bristol.
Frances
Presley (ACHCEW): It was reported that ACHCEW was very involved with the bill and possible
amendments to it as well as with the Transitional Advisory Board.
A lot of time was being spent on undertaking surveys of CHCs in
relation to PALS activity. In
some areas this was not being properly provided or funded. Another area
being addressed was the current complaints service;
many CHCs were still providing a full service here and were very
keen to be involved in anything that happened in the future in terms of
ICAS.
Karen
Thomson (Diabetes UK):
It was reported that work was being carried out on implementing
the NSF on diabetes and two staff members, Paul Streets and Bridget
Turner (Head of Policy) were members of the implementation group. Other
areas of work included the Disability Discrimination Act, NICE and work
in relation to PIAG and the NHS Code of Practice steering group.
Judy
Walker (Help for Health Trust): It
was reported that the Trust had recently launched its www.hiquality.org
website. This was part of
some work that had been done with the Department of Health on quality
assuring the content that went out through the digital interactive TV
pilots commissioned by the Department from four independent TV
companies. Members feedback on the new website would be welcomed.
Micky
Willmott (Age Concern): It was reported that Age Concern had been successful in getting a
change to the rules where pensions were either stopped or reduced after
a person had been in hospital for six weeks.
They had also managed to get changes to the benefit rules.
Together with some other Patient Forum organisations,
representations were being made that afternoon to the Health Select
Committee on delayed discharge. Age Concern had also just produced an
older people’s guide to the National Service Framework for Older
People and this was available on their website or via Age Concern.
Nikki Joule
(Neurological Alliance): It
was reported that they had just finished revising their Standards
of Care document which was being republished and launched at their next
members meeting in May and to a number of different audiences, including
MPs during the year.
Rahana Mohammed
(Long Term Medical Conditions Alliance):
It was reported that they were planning the follow up
workshops to the Quality of Life conference which had gone very well.
These would look at how best to start measuring quality of life.
Nikki Ratcliff (Consumers’ Association):
It was reported that Nikki’s main area of work at the moment
was around genetics, particularly around consent, confidentiality and
the use of personal genetic information.
They
had recently carried out some research looking at public understanding
and attitudes towards some of these issues and specific topics, e.g.
the use by third parties, like insurers or on genetic population
databases. The findings would be published as part of a policy report
around June 2002 and as a prelude to
their submission to the Department of Health Advisory Panel
(responsible for determining the content of the forthcoming Green
Paper), they had put together a short briefing paper. Copies were made
available at the meeting.
Wendy Garlick
(Consumers’ Association): It
was reported that Wendy was continuing work on the direct to consumer
advertising campaign and was setting up a patient information task
force. She also would soon be carrying out a scoping exercise on
pharmacies in general.
Judy Wilson
(National electronic Library for Health/member of Quality Task Force for
Health): It was reported that the NeLH work was continuing regarding
a virtual branch library and user involvement in health care.
A proposal had now been drawn up which a number of member
organisations had contributed to. It
was hoped that a pilot electronic library would be set up. Information
would be published in the Patients Forum newsletter about the next stage.
Ruth Taylor (Haemophilia
Society): It was
reported that the Society was now moving back into funding scientific
and medical research. They
were trying to set a target of £100,000 a year to fund either medical
and psycho-social research and to this end this year the Society had
been nominated as fundraisers and co-beneficiaries of Genes for Genes
– an organisation whose main beneficiaries include the Great Ormond
Street Hospital Children’s Charity, the Cystic Fibrosis Trust, and the
Primary Immunodeficiency Association. The Haemophilia Society would
receive a percentage of any funds raised and it was hoped to use this
towards getting back into funding research.
Jayne Thomas (National Council for
Hospice and Palliative Care): It
was reported that the Council represents professionals involved in
delivering palliative care and their views to the government, NHS and
media. The main
reason for attendance at this meeting was that Jayne is involved in
their User Involvement Panel looking at a getting users and patients
involved in decisions about care delivery.
More widely the Council was involved in the supportive and
palliative guidance going through NICE at the moment and their other big
agenda was palliative care for people with conditions other than cancer,
particularly coronary heart disease.
Bill
Kent (reMEmember, the Chronic Fatigue Society):
It was reported that
they had had encouraging talks with West Sussex County Council about
their self help classes for people with chronic conditions, particularly
ME, and the Council wanted them to give a series of presentations on how
their classes could help people to be able to do some limited work,
possibly under the workability or therapeutic earnings arrangements.
Jonathan
Ellis (Help the Aged): It was reported that their biggest piece of recent news was the launch of
their age discrimination campaign which had kicked off the previous
week. This would be
followed by a book examining the extent of age discrimination throughout
public policy. Information on the campaign and the organisations they
were linking up to was on their website. It was also reported that Help
the Aged had merged with Research into Ageing, the biomedical research
charity and this had given Help the Aged a new agenda.
Allison
Morris (Motor Neurone Disease Association):
It was reported that they had recently set up an all-party
group on MND. This was a new initiative and its purpose was to raise
awareness and understanding of MND amongst parliamentarians, provide a
political forum for debate and also act as a channel of communication
with the government. They
were also very interested in the NSF for Long Term Medical Conditions
and they were hoping that MND would feature in the NSF.
Ruth Berry (Alzheimers
Society): Future events included
a number of campaign issues:
(a) free nursing care
– this would be a six month review of just how dire this policy had
been
(b) over the Easter
weekend, together with other charities and independent home providers,
they would launch a campaign called “Fair rate for care” which would
talk about how there needed to be strategic planning and thought about
the rate of paid care both for residential homes, home care and
everything else.
5.
User involvement in implementing National Service Frameworks
Christine Hogg led the
discussion looking at a possible further study on how users were being
involved in the implementation of the NSFs on cancer, older people and
mental health. It was agreed that Christine would put together a
proposal based on members’ comments and this would be circulated for
further comment.
Date of next meeting
May
23rd, 2002
Appendix 1
Getting patients
attitudes to confidentiality - Michael Thick – Consultant Transplant
Surgeon –Caldicott Guardian to the NHS Information Authority
Definitions:
“Privacy
means keeping things to
oneself and it is a right we all have
Confidentiality
means keeping other people’s things to yourself, and that is a duty we
all have if people choose to tell us things
Security
is keeping other people out.
It is either in storage or in transit and that’s either an
organisational or a technological thing.
People often confuse
security and confidentiality and lump the whole thing together but they
are fairly separate when one looks at the meanings of the words.
It is useful to hold that distinction in one’s mind.
Allan Turing, credited
with cracking the Enigma machine at Bletchley Park during WW2, predicted
that computers would be capable of imitating human intelligence and
would do so by the year 2000. This was extremely prescient of him
because many of you will have come into contact with NHS Direct and this
is the first time there has been a mass deployment of artificial
intelligence inside NHS computers. Some years ago Margaret Thatcher
swung her handbag and said “there will be computers in the NHS” and
there were but these were management tools.
There is a Canadian
professor of health infomatics, Professor Protti, who has been acting as
an adviser to the NHS and I think he sums it up completely in these few
words: “The hard stuff is
the soft stuff.” What
we are really on about is how on earth do we get people to use
computers in a constructive way and to see them as a benefit and not as
a threat.
Security
and confidentiality.
You
may remember some four or five years ago that the NHS decreed that there
would be a Data Security Officer responsible directly to Chief
Executives and they would be entirely data/infomatics people, no
clinical involvement at all. At
that point the BMA got fairly aerated about it and said there since
there was no clinical accountability they had a big problem with it and
at that point a committee was convened and chaired by Dame Fiona
Caldicott. As a
result it was decreed that every organisation should have a Caldicott
Guardian who would, in effect, be a counterpart
to the NHS Data Security Officer and their role is to whisper
into the ear of the Chief Executive about potential risks. This role has
been given to Medical Directors
who by nature are very senior and very busy.
They do not really want it because they do not understand it and
they do not have time to go and get training for it properly.
Understanding the scope and breadth of the role undoubtedly
requires some training. The Medical Directors found that if by chance
they did stumble across a big issue it would be one lone voice in the
organisation, not exactly a career-enhancing activity.
There was some worry that if they did speak the truth that would
be held against them. The
other big point was how on earth could we really find out whether or not
this was an issue that mattered to patients, was it important?
So they commissioned some work
- Erdip – a programme organised by the NHS Information
Authority (it stands for the Electronic record demonstrator and
implementation project), to see how computers could be used in clinical
areas in a way that was really useful.
Part of this study was to investigate from patients and from
staff just what their attitudes were to the storage and sharing of
information and what really mattered. The questions asked included:
Whose data is it?
Do they really care about it?
Is individual rights vs the common good a real issue? What are
the implications in terms of the way we build systems and the way we
look after and use them?
The way we went about it was to conduct lots of focus groups, to
undertake literature searches; there
were lots of commissioned studies by the Department of Health, by the
Information Commissioner etc. There
were observable changes in additude, particularly with what happened
with the ministerial point of view. This changed radically over that
last year (we’re talking about the end of 2000 the beginning of 2001).
You will remember that there were a whole set of issues around
individuals being treated badly by the NHS, Hay etc,
As you can imagine, there was a complete turn round.
Legislation is evolving pretty fast, there is a lot around and it
is beginning to bite. Most
importantly, things that apply in Europe also apply to us in a
non-reversible way. Regarding
genetics, many people realise the potential threat that the willy nilly
divulgence of data can impose – it can serious damage a person’s
employment, insurance, social standing, relationships within the family
etc.
Results
The information distilled from all these
consultations, over about 18 months was that the data belongs to the
subject; we use it and share it only with their consent; awareness of
the technology is extremely variable, particularly in the older age
group. They were the first
to say “but I thought you had all our data on computer” which, of
course, we haven’t. The
consequences of sharing information by networking computers are ill
understood and when this is explained attitudes change remarkably from
being totally altruistic at the outset they began to close in quite
considerably. Subjects have
a right to decide how every bit of data is used so it is not just great
blocks of data; if within
those blocks there is a particular item, no matter how small which the
patient does not wish to divulge, they are entitled to keep that bit
completely private if they wish.
Last, but not least, people have a right to change their minds as
attitudes change over time.
Most subjects have no wish to control their
record, but many wish to view it.
Now that people know they have a right to see information held on
them a lot of them are keen to exercise it. Some even wish to write in
it. We would encourage that
in a way; it is nice to
know that our data is at least correctable. They often wish to write that they simply don’t
agree. We don’t have this
completely cracked yet but nonetheless it is clear that the patient has
a much closer involvement in their record than just speaking to the
doctor and having it written down.
Most subjects trust their GP with the record, but not other
surgery staff and I’m afraid the receptionist came in for a
particularly bad time in this age of multiple part-time employment.
Many subjects wish to know who has seen their record.
At the time when I wrote the slide the protections that we have
in terms of the laws, the Data Protection Act, etc
that we are all obliged to respect, were all rather greater than
most people expected in the way that we look after their records.
These are in the balance and shortly people are going to want us
to behave a great deal better than we currently do.
It is very difficult to pin down a particular
place where all this is and we have sets of divergent views, often
conflicting. There
are those who have a much more careful, protective view about how data
is used, the public themselves, clinicians in the round, the Data
Protection Act is pretty strict, the Human Rights Act is very definitely
there. The government is trying to repeal it (Section 60.
The Caldicott principles are very firmly behind the professionals
protecting data; we have
some pretty strong ministerial assurances;
the GMC also came out with some pretty strong guidelines.
On the other side we have the Information Commissioner, who is a
bit more liberal than might be expected;
researchers – some of whom seem to think they have the God
given right to have every
bit of information generated; there
are various bodies, PIU (the Policy Innovation Unit), the PIAG (Patients
Information Advisory Group) and SCIA (Security and Confidentiality
Advisory Group). All of these tend to have a much more liberal view than
certainly I have got out of what patients and the public want.
The laws go on for ever and ever, there are lots of them. All of these have a lot to say about how information can be
shared – it cannot be said that we’re short of guidance, there is
plenty of it. There
have been a number of ministerial comments
including: “”Informed consent is necessary in all but the most
exceptional circumstances.”
Where
are we now?
From the consultations that we have done it
is clear that 95% of people, when you ask them, will allow you to use
their information provided you ask them almost all the time.
The vast majority of people are permissive, on the understanding,
of course, that you behave properly and do the things that you say you
will do. It is clearly obvious that we must not ride rough shod over the
minority, their views must be respected, and it has to be said that part
of the reluctance of the Department of Health to implement security and
confidentiality properly is the inability of us to record dissent.
How do we know what people have said?
If they have said “no” what do we do about implementing their
denial. We also need to
show that as the custodians we will return the benefits back to society.
As an example of that if I am explaining things to patients what
I would say to them is: “If you are having a whole set of tests done
to you, particularly pathology tests, and we have a whole array of tests
that we could do on that data, we can tell you what is happening now,
but if you then close down all that data and it is not available to us,
then we cannot deploy any new techniques that come along.”
The sort of quid pro quo that I try to put forward is: “If you
let me have your data and use it responsibly, I will deploy all the new
technology and if there is something that applies to you we will let you
know so you can reap the benefits from it.”
In a sense, it is very much a balance, we ask the favour to use
it because we need it for planning and all the other things, and in
return we will make sure that if there are any benefits coming out of it
they will be told about it.
There are real problems with medical records.
You may have come across a particular report where it was claimed that
you could buy a record for £150 on any particular person.
The President of the BMA actually tried it.
He commissioned someone to go and find his record within three
hours for £150 and it was duly placed it front of him.
We have got a long way to go yet and systems are not in place yet
for looking after this properly.
The touchstone that I have got with the
Information Authority when people usually quarrel about the things we
try and make them do, is to say: “What are you going to say to the
judge in a year’s time when somebody objects now to the way we are
using their data?” All
the advice that we give to the Information Authority about what they
should do is: “Justify your behaviour now and what you are doing to
ensure it in the future.” We have to show that we really do care about
data and that means that the Information Authority itself has to
implement proper security in all its systems and legality in all its
systems. We’re a long way from doing that yet but we’re making
progress. It must be said
that the attitudes of data protection people and infomaticians are light
years away from clinical people. The former think that ownership of data is their right
because it is their job and it is very much harder to convince them
about security and confidentiality issues than it is to convince
clinicians. The
data is valuable, it is a hugely valuable resource in terms of research,
planning and looking after public health and we have to be completely
honest and say that we cannot turn a switch tomorrow and make it
completely perfect. The
implementation of all this is going to take a bit of time.
We promise to behave, please give us the time to make sure we can
behave.
What are we doing at the moment?
We have issued some interim guidance to the
service and in essence this guidance is that we know the NHS cannot stop
in its tracks, even though it does contain systems that are technically
illegal. What it can do is
to show that it is taking a path down towards explicit or expressed
consent. Remember, there
are two issues about data protection, the actual law itself, the Data
Protection Act, and the other side, the common law, which is what
happens when it is contested in court.
There is a precedent in common law about how confidentiality
should be treated although in December of this last year there was a
case where a health authority was taken to court because data was
divulged. It was thrown out
and thrown out of the Court of Appeal as well.
So we have one fairly strong precedent that shows that data may
not be divulged unless you have the explicit consent of the data
subject.”
Specimen
consent form
A specimen consent form, Version two, was
circulated at the meeting for comment and is attached.
This has gone out to extensive consultation.
Organisations unable to be present at the meeting may wish to
send in their comments on the questions below to Marlene Winfield at the
NHS Information Authority.
Questions
Does it tell you anything new?
Is it clear enough to be usable?
Should it be an opt-in form or an opt-out
form? (opt-in meaning
assume that the information is shared everywhere and ask for people’s
objections, or opt-out meaning that you would say to the patient:”how
your information is used is up to you.”
There are five places on the consent form
where the patient should sign. The
reason for this is that the
various reasons for keeping personal data are set out and people can
pick and choose the circumstances in which they would be willing to
allow their information to be used.
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