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Research

Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace

BMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c5814 (Published 17 November 2010) Cite this as: BMJ 2010;341:c5814

Rapid Response:

A ball stuck up a tree: one patient's perspective on HealthSpace

The study of HealthSpace by Greenhalgh et al. [1] and the rapid
responses so far published make interesting reading from a personal as
well as a professional point of view, as I am a healthcare librarian who
also happens to be a diabetic patient with a HealthSpace basic account.

My experience of the basic HealthSpace account (all that is currently
available to me) is generally negative. It promises much but delivers
little; there is insufficient context-sensitive explanation of the
advanced account; the Help/ Frequently Asked Questions (FAQ) section is
inadequate and confusing. I feel as though I am trying to retrieve a ball
stuck up a tree but do not have a long enough stick to reach it. I
consider my computer and Internet skills to be very good (I specialise in
electronic resources), so if HealthSpace has this effect on me I can well
imagine the frustration of other patients.

I have some additional concerns about HealthSpace that were not
addressed in the Greenhalgh study:

(a) Contrary to what is stated in FAQ 8, it is possible to create a
HealthSpace account for someone else.[2] You can create as many fictitious
basic accounts as you like, as long as each has a valid e-mail address. I
expect this to be possible with general social networking websites, but do
not consider it appropriate for an official, government-supported site for
the management of one's personal health.

(b) The same NHS Number can be used multiple times. In my view it
would be more sensible for the NHS Number to be a requirement of the
original registration process rather than added to the user's profile
after registration - and only able to be used once, as with e-mail
address.

(c) It is possible to create and use a fictitious NHS Number, as
there is no verification or validation of what is actually entered on the
user's profile.

(d) Because of (b) and (c) I see no way for a properly secure link to
be made to a Care Record. One could argue that Summary Care Record access
is only part of the advanced account which is only obtainable by a select
few who have to register somewhere in person and prove their identity, but
this registration process would be so much easier if the NHS Number had
been mandatory and verified and single-use at the Basic Account
registration stage.

Aside from the vicissitudes of the HealthSpace website, the strategy
and policy documents relating to HealthSpace reveal an arrogant and
paternalistic attitude of "The Powers That Be" towards patients, together
with an assumption that computers and the Internet are magic. I certainly
do not feel liberated or empowered or given more control by the idea that
one day I will be able to have an advanced account with a Secure Login
Card. I am not alone in having concerns about relying on "black stripes
and inaccessible microchips" and introducing technology for its own
sake[3]. I personally doubt that the current Department of Health
consultation exercise[4] will do much to change the situation.

References:

1. Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J. Adoption,
non-adoption, and abandonment of a personal electronic health record: case
study of HealthSpace. BMJ 2010;341:c5814.

2. https://www.healthspace.nhs.uk/help.aspx#Q8 (accessed 29 November
2010)

3. Fawdry, R. Assessing the consequences of changing childbirth.
Smart cards are expensive and easily damaged. BMJ. 1995 Apr 22;
310(6986):1066-7.

4. Department of Health. A revolution for patients. Consultations on
an information revolution and greater choice and control.
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_120607.pdf
(accessed 29 November 2010)

Competing interests: No competing interests

29 November 2010
Helga J. Perry
Electronic Systems & Resources Librarian
University Hospitals Coventry & Warwickshire NHS Trust