Evidence submitted by the Socialist Health
Association (EPR 62)
The Socialist Health Association was founded
in 1930 to campaign for a National Health Service and is affiliated
to the Labour Party. We are a membership organisation with members
who work in and use the NHS. We include doctors and clinicians,
managers, board members and patients. Our interest in public and
patient involvement is longstanding. Our members are involved
in a wide variety of ways in health and social care. This submission
is made on behalf of the Association.
1. There is a lot of hysteria about electronic
health records. Those of us who have worked inside health institutions
have no illusions about the safeguards applied to paper records
which in most healthcare establishments are open to casual inspection
and interference by anyone who has sufficient determination to
find them. Furthermore the paper records are very often not available
when needed, even in the institution where they are created. There
is almost no system for making records available to any other
institution. We think that any decisions made about electronic
records need to be put in that context. Electronic records, however
imperfect, are likely to be an immense improvement on what exists
now.
2. We would want to see the most comprehensive
information kept in electronic record systems. We are alarmed
to discover that it is proposed to exclude mental and sexual health
from the record. In our view that seriously undermines the clinical
usefulness of the system. It also contributes to the continuing
stigma attached to these areas. If this foolish idea continues
we hope that it will be possible for patients to decide to include
this information in their record.
3. It is important that patients have free
access to anything in their own record. That should improve trust
between patients and clinicians and encourage both to be truthful
and to see healthcare as a joint responsibility. For some patients—children
and those unable to make their own decisions—it will be
important that carers also have full access. We would like to
see computers made available in GP surgeries and hospitals which
could be used by those who do not have access to their own facilities.
Some information in the record may need some sort of interpretation
if the patient is to understand it. And the record might include
reference to information which is not there—like recent
records of blood pressure or alcohol intake. We suggest that it
might help confidence in the system if individual patients were
able to make their own decisions about who was allowed to access
their records and in what circumstances. However we find it hard
to see who any clinician could be expected to take responsibility
for the care of a patient if they were not allowed access to the
record. A system which alerted patients when their electronic
record was accessed, if they were not present, might also help
instill confidence.
4. We would want to see widespread access
to aggregated data which did not identify individual patients.
Anyone wanting access for research purposes to data about individual
patients should need to demonstrate informed consent.
5. The question of whether patient data
can be adequately protected is a technical one on which we are
not qualified to comment. However it seems hard to see how electronic
records could be less protected than the existing paper systems.
Martin Rathfelder,
Director, Socialist Health Association
16 March 2007
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