My illness, my record
BMJ 2007; 334 doi: https://doi.org/10.1136/bmj.39146.615081.59 (Published 08 March 2007) Cite this as: BMJ 2007;334:510
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And paradoxically it is only minority groups who can even access this
debate itself in the BMJ.Access to information needs to be inclusive in a
genuine democracy primarily as a 'right' but also to get records right.
There needs to be a much stronger committment to action by those who
support rather than attempt to block access by whatever strategy. eg 'not
in the interests of 'vulnerable' people - we can all become vulnerable at
some stage, but health workers alone should not be making decisions 'in
their interests'. Only those with access to information can make decisions
so why is there no formal obligation to inform people in health settings
by such things as standard forms to state opinions on file, give those
who are excluded access to computers in health centres - computer access
should be used to mutually empower all groups rather than be used as tools
mainly designed to monitor others' lives.If claims to be practicing
'social medicine' are genuinely designed to be in the interests of all, a
democracy needs health and other services which embrace the need for
different relationships with individuals and communities - access to
health records is one marker.That many are still too intimidated to ask
for their records says much for how far the UK has to go.
Competing interests:
None declared
Competing interests: No competing interests
Last October the Patient Information Forum (www.pifonline.org.uk)
planned to run a workshop on this topic, entitled “Patient access to
records”. Despite having leading speakers and practitioners on the
programme (many of whom are mentioned above), and support from NHS
Connecting for Health, we could not raise sufficient interest to run the
event. At our annual conference last month, Dr Amir Hannan ran a break
out session entitled “Record Access – really getting the message across”.
7 people attended his morning session.
Yet when word got around at lunchtime about the impact that this
could have, his afternoon session had 70 people cramming into a session
planned for a maximum of 50.
There is something about perception here. People don’t seem to know
what ‘record access’ means, they give the topic cursory attention, they
perhaps think of it as another ‘geeky’ IT project. The lack of Rapid
Responses to this excellent article perhaps provides further proof?
And yet when practitioner or patient catches a glimpse of what this
could, and indeed in some places, does mean, there’s no stopping them…
What more can we do – individually and collectively - to provide that
insight?
Competing interests:
I am a member of the Record Access Collaborative
Competing interests: No competing interests
There is a fundamental change going on in society with patients
moving from being passive recipients of care to active participants who
wish to know more and be more involved. At the same time there is a
plethora of information readily available via the newspapers, TV, the
radio and of course the internet that offers the public information about
a wide range of health topics. The challenge is whether the public is
ready to be confronted by their own health record and what its
implications may be. The fundamental question we now need to ask is
whether "society is ready for the medical profession to be so open to
allow everything to be seen by the patient if he or she so wishes?". The
medical profession will need to meet this challenge as it develops a new
partnership with patients to understand where if any the boundaries of
such openness exist.
I have over 150 patients accessing their complete GP held records
over the internet. The numbers are small at the moment but they are
growing at an exponential rate as more patients find out about it and tell
others. The advent of the Summary Care Record via the Spine will further
support this development enabling millions of people to benefit from it
and is a welcome development whose time has come. Records Access changes
the nature of the doctor-patient relationship, empowering both patient and
clinician and improving the delivery of care.
You can find out more about how I am promoting it within the practice
by sending me an e-mail or going to Healthcare 2007 on 20th March in
Harrogate where I am presenting with one of my patients, a local
consultant psychiatrist and a health informatics manager "Trust me I'm a
patient"
Competing interests:
Member of the Records Access Collaborative,
Member of Clinical Leaders Network
Competing interests: No competing interests
Tessa Richards makes an eloquent case for patients having the
opportunity to access their medical record; it is just, right and in the
words of Tudor Hart, explicitly enables patients to be ‘co-producers of
health’.(1) She also comments that the benefit of patients having access
to their medical records is a ‘self evident truth’ in some health
economies. Although the benefits may be enormous, there are potential
harms and much will be written about the risks of such unfettered patient
access to their records before this issue is laid to rest.
Nevertheless, we must not lose sight of the potential of universal
patient record access to fundamentally change the quality of
consultations. We teach that the key step in any consultation is to reach
a shared understanding of the problem with the patient;(2) expectations,
hopes and fears are identified and what can and cannot be done explicitly
discussed and acted on. In a series of educational assessments of the
consultation skills of volunteer experienced UK general practitioners,(3)
the most common recommendation for improvement concerned identification of
the patient’s reasons for consulting (77% participants) and the fourth
most common concerned collaborating with the patient in agreeing
management plans (23% of participants, unpublished data) vividly
demonstrating that achievement of shared understanding can be improved.
When patients can assess the records we make of their consultations,
the gap between their agendas and our actions will become very explicit
and a powerful catalyst for us to improve our consulting skills. Universal
patient record access will produce a paradigm shift in our relationships
with our patients. We can embrace it or resist it but our world will never
be the same again.
Reference List
(1) Tudor-Hart J. Feasible socialism: the National Health Service,
past, present and future. 1994. London, Socialist Health Association.
Ref Type: Pamphlet
(2) Fraser A, Skelton J. Royal College of General Practitioners'
Curriculum Statement 2: The general practice consultation. http://216 239
59 104/search?q=cache:EcjvvTNfF4gJ:www rcgp org
uk/pdf/educ_curr2%2520The%2520GP%2520Consultation%2520Jan%252006
pdf+%22shared+understanding+of+the+problem%22+consultation&hl=en&ct=clnk&cd=6&gl=uk
[ 2006 [cited 2007 Mar. 13];
(3) McKinley RK, Dean P, Farooqi A. Reactions of volunteer general
practitioners to educational assessment of their consultation performance:
a qualitative study. Education for Primary Care 2003; 14(3):293-301.
Competing interests:
None declared
Competing interests: No competing interests
Tessa Richards is absolutely right - there are considerable benefits
to be gained from encouraging patients to access their medical records,
but British patients are currently getting a raw deal. Technically they
have a right to access their records, but many are either unaware of this
or feel too many barriers are placed in their way.
Comparison of patients' reports from six countries [1] showed that
the UK is performing least well, with only 28% saying they can access
their medical records, compared to 34% in Canada, 40% in Australia, 45% in
New Zealand and 51% in the USA.
Demand for record access is high in all these countries. The majority
of respondents to these random population surveys said they would like to
have access to their records: 59% in the UK, 64% in New Zealand, 67% in
Australia, 73% in Canada, and 75% in the USA.
Record access for all patients who want it should be a key component
of any strategy to support self-care and improve public health. Why is it
taking so long to implement this policy?
[1] Coulter A. Engaging patients in their healthcare. Oxford: Picker
Institute Europe, 2006.
http://www.pickereurope.org/Filestore/Downloads/Six-country-study-6-4-06-
web-version.pdf
Competing interests:
None declared
Competing interests: No competing interests
The Record Access Collaborative is a world-wide group that examines
and promotes patient record access. We are plesed that the BMJ has
published an item on this subject.
We see that this approach can transform current medical practice.
Record access can harness the record as a personalised tool for:
- supporting shared decision-making
- informing patients about their condition and their management
- showing patients what good practice in their personal care should look
like
- improving the accuracy of the record
- making care safer
- enabling the patient and/or their carers to coordinate often fragmented
care
- reminding patients of key stages in their care pathways
In the US, record access is widely available and is enthusiatically
supported by patients, administrators and clinicians.
We would like to see all patients being given the opportunity to have
access to their full record, so long as simple safety procedures are in
place. The Collaborative is working on guidelines for good practice that
will make it as safe and easy as possible for practices and patients. The
Collaborative is in close touch with NHS Connecting for Health.
We also think that this approach should be highlighted to the Health
Select Committee which is gathering evidence about the Electronic Patient
Record at the moment.
A 100 practice pilot is now being recruited to extend full online
record access to more practices and learn more about the process of making
records safely available. If practices would like to join, please contact
brian.fisher403@ntlworld.com
Further information on record access and worldwide contacts is
available from www.icmcc.org
Brian Fisher
Lead for Record Access Collaborative
Competing interests:
I am a co-director of PAERS, a company that develops software that enables patients to see their electronic health record. I am also funded by EMIS as Lead of the Record Access Collaborative which promotes patient record access.
Competing interests: No competing interests
I would like to support all that Ms Richards says. The problems of
third party information will be easier to avoid if we know we are sharing
the record with the patient or guardian from the outset. In practice,
people will avoid reading a record in the same circumstances that they
currently ask for information to be shared with their relatives rather
than with themselves. I believe the real concerns that my colleagues
often express about sharing records with the patient are far outweighed by
the advantages.
Perhaps the biggest advantage of a patient held record - or, even
better, a GP held record to which the patient has unconditional access -
is that it makes the use of NHS numbers, the English information spine,
and a national database of medical records quite unnecessary. At least,
it makes this apparatus for uniquely identifying every person in the
country quite unnecessary for their individual medical care. The
likelihood of identification errors when the record is accessed by the
patient or by the general practice (whose staff will know about local
pitfalls in the identification of Mr Jones or Mr Singh) is much lower than
the likelihood of errors in the national database. This only leaves
research, commercial, billing or national security uses for the NHS number
and health database, none of which in my opinion warrant the vast expense
of its construction and support.
Information security is also best served by keeping the information
under the control of the patient. A national database is certain to be
accessible to anyone with a reasonable amount of money to spend. I leave
the detailed exposition to those more expert than I.
Competing interests:
None declared
Competing interests: No competing interests
Tessa Richards makes a strong plea for full access to personal
records on-line. Although some of the advantages she cites are those of
centralised access to health records by health care professionals, there
are advantages, which personal access may provide, including potentially
improving the accuracy of the records, enhancing the doctor-patient
partnership and in the case of falling ill when travelling abroad.
However, the main danger of such access is not too much information
for the patient or a threat to medical hegemony, but rather to vulnerable
people who may not be able to control access to the record. Dr. Richards
hints that access to her children’s (and possibly her father’s record)
would have been useful. However, at what age should access to the child’s
record stop…..when she asks the doctor for her first prescription of the
oral contraceptive pill? How will she explain to her mother why she
doesn’t want her to see what the doctor said? Could a mildly cognitively
impaired elderly parent prevent a well meaning, but somewhat overbearing,
daughter or son scanning their record and possibly discovering their
treatment for a sexually transmitted disease many years ago or a
termination of pregnancy that had been long forgotten? Would an abused
wife really be able to stop her husband accessing her record to find out
her past history or what she may have said to the doctor about him the
last time she was in?
I am sure that Tessa Richards, and many well meaning people like her
would not trample on vulnerable people’s rights in such a way, but there
are plenty who will.
For thousands of years patients have been secure in the knowledge that
their doctors would vigorously defend their secrets regardless of who
requested it and that they could safely tell them anything. For some
people this is about to end. We have to be very sure that what we gain is
worth this loss.
Competing interests:
None declared
Competing interests: No competing interests
Do you want to know more about Records Access
It is apparent to me that there is a great deal of interest in
patients being able to access their medical records. But there are
genuine concerns about privacy, confidentiality, how useful this will be
for patients or clinicians, how can the medical profession safely and
responsibly enable patients to access their medical records in a world
where the internet has enabled people to find out almost anything on the
planet and beyond, what tools are there and what do we need to develop to
help patients and clinicians get the most from any such advances, what
about things that we should not be sharing - who decides what this is and
how can we develop an appeals process and who should govern this, what
special considerations should there be for the "hard to reach" groups in
society so that we can ensure this benefits in society and not just the
precious few, can we learn from other industries that have been through
this process eg the financial sector, the commercial sector or perhaps
from other parts of the world.
My feeling is that these issues may need to be aired more formally at
an "event" perhaps in Scotland (to show this is not just an English
phenomenon!) or perhaps at the Primary Healthcare Specialist Group
conference or perhaps even a Masterclass arranged by the BMJ Group or even
the Cochrane group where we attempt to gather experts to discuss the
issues at heart here! The previous respondee is quite right in saying that
this discussion really needs to involve everybody in society but we have
to start somewhere and this is as good as any!
You can contact me on amir.hannan@nhs.net and let's see what we can
do!
Competing interests:
Member of Records Access Collaborative, Member of Clinical Leaders Network
Competing interests: No competing interests