Intended for healthcare professionals

Editorials

Soft paternalism and the ethics of shared electronic patient records

BMJ 2006; 333 doi: https://doi.org/10.1136/bmj.38890.391632.68 (Published 29 June 2006) Cite this as: BMJ 2006;333:2

"Opt in" v. "Opt Out"

In his excellent editorial, Professor Norheim (1) has fallen into the
trap set by the Department of Health by presenting this as a simple “opt-
in” versus “opt out” debate. Unfortunately, the “opt out” being offered by
Connecting for Health is not the reciprocal of the “opt in” being demanded
by the professional bodies (2).

“Connecting for Health” (CfH) is persisting with the objective that
all clinical records will be recorded on the National Database. The only
“opt out” which CfH is offering to patients is to partially inhibit the
sharing of information through the use of software controls metaphorically
dubbed “sealed envelopes”. Recent documents produced by CfH (3),(4),
confirm that such “sealed envelope” controls are not yet operational or
tested, that they will never protect various types of information,
particularly that recorded in scanned images of correspondence, and that
the explicit wishes of the patient can and will be over-ridden.

As a consequence the caveats which Norheim describes in the
conclusion of his editorial (1) cannot be fulfilled. The professional
bodies are justified in their requirement that patients must consent prior
to the recording and storing of information on the National Database.

It is bizarre that Lord Warner, Health Minister, should call for
"leadership from the profession to conclude this debate”(2). It is Lord
Warner’s department and Connecting for Health who are delaying matters by
deliberately suppressing a genuine “opt-out” choice.

The Information Technology strategy would have been substantially
advanced 18 months ago if the Department of Health had acted on the
leadership of Lord Warner’s ministerial predecessor, Mr John Hutton MP,
who reassured the BBC (4),(5),(6), that patients would be able to choose
the genuine “opt out” - not to have their data recorded and stored on the
national database. This “opt out” choice is the true reciprocal of the
“opt in” being demanded by the professional bodies. This choice for
patients was reiterated to the House of Commons more recently by the
current Health Minister, Caroline Flint MP (7).

Despite the government’s advocacy of “Patient Choice”, the National
Care Records Guarantee (8), and the publicity for patients that will
derive from it, has not been amended to make patients aware of the choice
acknowledged by the ministers. Nor has there been any clarification from
CfH of how the medical care of patients who exercise that choice will be
taken forward.

Lord Warner presents the only alternative as dangerous paper based
systems. I am confident that the twenty three IT experts recently so
critical of CfH (9) will be able to suggest highly satisfactory
solutions.

(1)
http://bmj.bmjjournals.com/cgi/rapidpdf/bmj.38890.391632.68v1?hrss=1

(2) http://bmj.bmjjournals.com/cgi/content/full/332/7556/1467/DC1

(3) http://www.ardenhoe.demon.co.uk/privacy/Paradoxical%20access.pdf

(4)
http://www.ardenhoe.demon.co.uk/privacy/NHS%20database%20proposals%20unl...

(5)
http://www.bbc.co.uk/radio4/today/listenagain/zthursday_20050331.shtml

(6) http://news.bbc.co.uk/1/hi/health/4392555.stm

(7)
http://www.publications.parliament.uk/pa/cm200506/cmhansrd/cm050616/debt...
-35.htm

(8) http://www.e-health-
insider.com/tc_domainsBin/Document_Library0282//nhscr_guaranteev1.pdf

(9) http://www.timesonline.co.uk/article/0,,8122-2128169,00.html

Competing interests:
None declared

Competing interests: No competing interests

26 June 2006
Paul Thornton
General Practioner
Pear Tree Surgery, Kingsbury, Warwickshire, B78 2NR