Public standards and patients' control: how to keep electronic medical records accessible but privateMedical information: access and privacyDoctrines for developing electronic medical recordsDesirable characteristics of electronic medical recordsChallenges and limitations for electronic medical recordsConclusionsCommentary: Open approaches to electronic patient recordsCommentary: A patient's viewpoint
BMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7281.283 (Published 03 February 2001) Cite this as: BMJ 2001;322:283All rapid responses
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Editor,
Mandl and colleagues think that patients should be able to annotate
and challenge interpretations in their records but Rhona MacDonald in her
commentary thinks that this will have British doctors reeling in
horror.(1) The utility of patient's auditing and being able to correct
their computer-held records has been shown in British studies including
administrative records in hospital,(2) and problem and medication lists in
diabetes outpatient clinics (3) and general practice.(4) For example in
this last study 24% of patients said there were mistakes and 30% omissions
in their records including allergies, dates of birth, addresses, current
medications and items on the problem list, smoking details, height,
weight, alcohol and family history.
There are other challenges to achieving Mandl's aim which they have
not described. There may be items on the record which the doctor does not
want the patient to see. The desire for such 'censoring' is not always due
to paternalistic or secretive doctors but may be due to the need for time
to discuss with the patient. For example, in the early 1980s, in moving
from poor quality paper to computerised records with a copy for the
patient, doctor's censored many items, apparently without due cause, but
probably because they could not be sure that these had yet been discussed
with the patient.(5)
Patients may not understand their medical record and we need to find
ways to use the medical record as a gateway to explanations and further
information which may be available on the web. Patients, as well as
professionals, need more open evidence-based discussion about the uses of
records so that they can make informed choices about who should, and
should not, have access to their record. The recent study of communication
between general medical and general dental practitioner found that at
baseline less than half the patients thought that dentists should have
full access to their general medical practice record. The experience of
holding their own summary record made patients more positive towards the
idea.
These American authors have problems (competition between
institutions and reluctance to share information) which are of less
concern or (how to uniquely identify patients) have (hopefully!) been
solved in the UK. However, we have an important problem, equity of access
to information for patients, which they do not mention. We need to
investigate different ways of achieving equitable access to medical
records which both patients and professionals will find useful and
acceptable.
Ray Jones
Senior Lecturer in Health Informatics
University of Glasgow
References
1. Mandl KD, Szolovits P, Kohane IS. Public standards and patients'
control: how to keep electronic medical records accessible but private.
BMJ 2001;322:283-7. (Commentary by R.MacDonald).
2. Jones RB, Nutt RA, Hedley AJ. Improving the quality of data in a
computerised patient master index - implications for costs and patient
care. Effective Health Care 1984;3:97-103.
3. Jones RB, McGhee S, Hedley AJ, Murray KJ. Patient access to
information.. In: Roberts J, Windsor P, eds. In Current Perspectives in
Health Computing. Weybridge, Surrey: British Journal of Healthcare
Computing, 1988;206-212.
4. Jones RB, McConville J, Mason D, Macpherson, Naven L, McEwen J.
Attitudes towards, and utility of, an integrated medical-dental patient-
held record in primary care. BJGP 1999; 49:368-373.
5. Jones RB, Hedley AJ, Tattersall RB, Allison SP. Censoring of patient-
held records by doctors.. J Roy Coll Gen Pract 1988;38:117-118.
Competing interests: No competing interests
Mandl et al correctly argue for patient control of their universally
accessible health records.
However, I do understand and appreciate David Mrkwell's concerns
regarding such an approach.
I remind the readers of Bill Dodd's concept of the 'Health
Information Bank' where health information is treated as currency under
the control of the 'account holder'. The account holder would have the
option of releasing just the exact amount of data they wish at any given
time (this might go some way towards satisfying Rhona MacDonald's
criteria). One can imagine different types of accounts according to the
security level determined by the account holder, I suppose more like
platinum, gold and silver levels of protection that can change whenever
the individual's circumstances change.
The Bank is governed by the Health Information Academy, which forms
the moral and ethical backbone of the Bank as well as providing for the
research and aggregated data study that are essential for planning and
delivery of health care services.
Furthermore, there would be an attached Health Information
Corporation that would enjoy the commercial exploitation of aggregated and
annonymised data, with the explicit consent of the 'account holders' (the
aptients). The corporation would operate under strict controls from the
Academy, of course.
There is nothing in this scenario that would not entail the
development of 'bank branches' to achieve a degree of distributed data
models.
Perhaps it is time to re-visit Dodd's ideas. After all, Mandl argues
that consumers now control much of their online affairs, including
financial ones. Why not their intelligently regulated health information?
Ahmad Risk
P.S.
I, like Markwell, welcome very much the emerging European-USA
collaboration in standards development. Not before time!
Competing interests: No competing interests
Electronic Medical Records & Privacy
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