From patients to end users

I read the recent internet theme issue (9 March 2002) with great
interest. As a fledgling clinician with a belief in the ideals of patient
empowerment I am excited by the possibilities of the internet to deliver
higher quality, more patient centred care, especially for those patients
with chronic disease.

Information potentially empowers patients to collaborate with their
“wise and caring” <_1/> doctors in making decisions on their health.
The importance of quality health information to NHS strategy is voiced in
Our Healthier Nation <_2/> and more specifically in Information for
Health <_3/> which states that “readily accessible, relevant, research
based information in a format that is useful to patients” is central to
the Expert Patients<_4/>program for the management of chronic disease.

Official statistics suggest that the internet is an accessible and
affordable source of information. 1/3 of the UK population is online (more
than any other European country), 90% of UK employees work in businesses
which are connected to the internet, and the UK is the cheapest place in
the world for off peak internet access <_5/>.

In practice strong reservations have been voiced as to how useful
Internet Heath information is to patients. In a systematic survey of www
advice on managing fever in children at home Impicciatore et al <_6/>
found that “ It was difficult for parents to put the information they
receive into practice as it is often incomplete and misleading..Only a few
web pages reviewed gave complete and accurate information.” Eysenbach et
al <_7/> concurred that “variability in quality limits the use of the
Internet as a Health resource.” In an effort to address this variability
researchers have evaluated web pages in different disciplines and
attempted to define a list of requirements for users to evaluate their
quality. A recent systematic evaluation of the quality of health
information <_8/> reports that “despite these apparently unproductive
attempts to amend the situation, it has improved.”

During my work as a PRHO in General Practice I was interested in how
much impact internet health information has had on an inner city practice
population. A questionnaire was used to investigate a random sample of 100
of the practice population of 8064. The sample, though small was
representative of the practice population with respect to age, sex, and
ethnic origin.

54% had access to a computer in their own home, and 41 % had used the
internet at some point. Those that did use the internet tended to be
employed, Students, of the younger age groups, and were more likely to own
a computer in their own home.

Participants were asked the question: “It is important that I look
for information on my health so that I may take a greater part in decision
making with my doctor. ” 69% agreed, 14% of people disagreed, and 17%
were undecided.

Out of those that agreed, 1/3 did not in practice look for health
information at all, and only 20% looked for Health Information on the
internet. Out of this group (13) 11 disagreed that it had improved their
understanding of their health and 2 were undecided whether it had improved
their understanding or not.

The findings of this exploratory study differ from those of the Pew
Internet and American Life Projects <_9/> as quoted in Tom Ferguson’s
lead article<_1/>. Whilst empowerment is a worthwhile strategic end, and
promoting the availability of information through the internet is a
theoretically effective means; in practice the patients in this study did not feel that
internet health information had made much impact on their understanding of
their health and their ability to make more informed decisions concerning
their care.

References

1. Ferguson T, From patients to end users; Quality of online patient
networks needs more attention than quality of online health information
BMJ 2002; 324:555-6

2. Department of Health, Our Healthier Nation. NHS 1998

3. Department of Health, Information for Health - An Information
Strategy for the Modern NHS 1998–2005. A national strategy for local
implementation. NHS Information Authority 1998

4. Department of Health, The Expert Patient : A New Approach to
Chronic Disease Management for the 21st Century. NHS 2001

5. Department of Health, Building the information core: Implementing
the NHS plan. NHS Information Authority 2001

6. Impicciatore et al, Reliability of health information for the
public on the world wide web: systematic survey of advice on managing
fever in children at home. BMJ 1997; 314:1875

7. Eysenbach G, Rating information on the Internet can empower users
to make informed decisions. Letters BMJ 1999;319:385

8. Pandolfini C, Bonati B, Follow up of quality of public oriented
health information on the world wide web: systematic re-evaluation. BMJ
2002;324:582-3

9. Fox S, Lee R. The online health revolution: how the web helps
Americans take better care of themselves. The Pew Internet and American
Life Project, Washington, DC, 26 November 2000.
www.pewinternet.org/reports/toc.asp?Report=26