© 2008 The authorJournal compilation © Health Libraries Group 2008

Health Information and Libraries Journal

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DOI: 10.1111/j.1471-1842.2008.00773.x

Blackwell Publishing Ltd

Editorial

Kate McIntosh, Edinburgh, UK

Information, immunization and the information professional

In the UK, the National Health Service (NHS) hasbeen a much cherished institution since itsinception in 1948. It is a continuously changingorganism and has been affected by political changesas well as technological and medical advances.These changes have influenced the practice of allprofessions in the health service, although it maybe argued that one principal political change hasaffected the role of the information professionalmore than others: the development of a newphilosophy of effectiveness, accountability andtransparency.

This new philosophy emerged in the

Workingfor Patients

1

white paper in 1989, which said thatpatients should have ‘clear information about thefacilities available ... and clear and thoughtfulexplanations of what is happening—on practicalmatters such as where to go and who to see, and onclinical matters such as the nature of the illnessand its proposed treatment’. The introduction ofthe

Patients’ Charter

2

in 1991 gave explicit rightsto the patient for information about hospital,community and general practitioner (GP) services.These two important documents laid the founda-tion for a more consultative approach, in whichpatients could participate in decisions about theirown health care and, as a result, led to society’schanging attitude to the doctor/patient relationship.

These changes over the past 20 years wereinstrumental in consumer health information(CHI) becoming ‘a large and important field verymuch at the forefront of government healthpolicy’.

3

This combined with the increased demandfor information from patients and the public havemade it necessary to consider how best an informa-tion professional can help provide correct, rele-vant and up-to-date information. As Tony McSeánsaid in a press release following the measles, mumpsand rubella (MMR) immunization revelations,

‘the volume of available information has multipliedincalculably ... and the risk of information beingmissed or connections not being made increases inproportion. The need for information professionalsto manage this vast and expanding store is para-mount’.

4

The MMR controversy illustrates the repercus-sions of mishandling the vast quantity of informa-tion available. Not only did the lay-personmisinterpret information, but the series of blundersand misinterpretation of evidence by healthprofessionals began a process that gatheredmomentum and led to regular debates concerningchildhood vaccinations.

In February 1998, the

Lancet

5

published anarticle by Wakefield

et al

. suggesting a link betweenthe MMR vaccine and the development of a bowelcondition and autism in 12 children. The sub-sequent global scare resulted in a massive andpersistent decrease in MMR immunization and arise in outbreaks of these diseases. The basis of thescare was the claim by the parents of eight childrenthat health problems in their children had setin within days of vaccination. Through furtherinvestigation, Brian Deer of

The Sunday Times

6

revealed in 2004 that not only were most of theparents the clients of the same lawyer but also thatWakefield had been funded through an undisclosed£55 000 from the

Legal Services Commission

tohelp them sue drug companies.

Also in 2004, Professor Trisha Greenhalghconcluded that ‘... the Wakefield study was scien-tifically flawed on numerous counts. I am surprisedthat neither the editor (Richard Horton of the

Lancet

) nor the reviewers spotted these flaws whenthe paper was submitted. Had they done so, thepublic would have been saved the confusion andanxiety caused by false credibility conveyed bypublication of the study in this prestigiousjournal’.

7

The fact that the

Lancet

had publishedthe article lent it a kudos that was further reinforcedby the fact that the research paper bore the names

Editorial

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of 13 eminent experts. It is also a concern that thepaper itself did not reveal that the children hadbeen referred to Wakefield because of his interestin the MMR/bowel cancer link, but an editorial inthe same issue did. The lay press did not pick upthe bias and many supported Wakefield and thelink between MMR and autism, arguing that theevidence to the contrary was the result of a con-spiracy by the medical profession.

8

The information was relayed in an incompleteand inaccurate form in the lay press and the resultof all this misinformation and disinformation isthat, a decade after the initial research paperappeared in the

Lancet

, the take-up of the MMRvaccination is still dangerously low. This is despitethe huge amount of information (including a20-year study of all children born in Finland) thatcompletely opposes the findings of the Wakefieldgroup.

The controversy has not been satisfactorilyresolved and rears its ugly head from time to time.Recently, the inclusion of the chickenpox vaccineinto the MMR vaccine has been subject for debatein the lay press, with many questions being askedabout their safety. The public are bombarded withheadlines such as ‘Chickenpox jab should beadded to MMR, scientists say’

8

or ‘Doctors wantto combine vaccine for chickenpox with the MMRjab’

9

in contrast to ‘Chickenpox vaccine “willoverload children” ’,

10

as well as opinion pieces inseveral papers, such as the one in

The Scotsman

on17 November 2007, ‘They want to put morevaccines into our children. Just say no’;

11

all ofwhich may be well meant but which are not writtenby medical experts and do not weigh up, in anunbiased fashion, all the available evidence.

Society is losing confidence in groups of trustedprofessionals. The public do not trust politiciansand various medical scandals (e.g. the thalidomidescandal of the 1950s and 1960s, the inadequatemonitoring of Harold Shipman, controversiesinvolving David Southall and Roy Meadow) haveseverely undermined public confidence in themedical profession. So is it time for informationprofessionals to come out of the woodwork and

make our profession more widely known? Shouldwe launch ourselves as a group of concernedexperts with no secret agenda; financial, political,status driven or other, simply as experts who cansearch for, find, assimilate and disseminate valid,relevant and up-to-date information?

It is perhaps apt to return to Tony McSeán andhis comments concerning the MMR affair but rel-evant to the dissemination of health informationin general ‘... this affair demonstrates vividly howdependent both the medical profession and thepublic are on reliable, verifiable information that isefficiently managed and can be retrieved whenrequired.’

4

References

1 Department of Health, UK.

Working for Patients

. London: Her Majesty’s Stationery Office, 1989.

2 Department of Health, UK.

Patients’ Charter

. London: Her Majesty’s Stationery Office, 1991.

3 Mackay, D. Consumer health information. In: Booth, A. & Walton, G. (eds).

Managing Knowledge in Health Services

. London: Facet Publishing, 2000.

4 CILIP.

MMR Row Highlights Importance of High Quality Information

. London: CILIP Health Libraries Group, 2004.

5 Wakefield, A. J.

et al

. Ileal–lymphoid–nodular hyperplasia, non-specific colitis and pervasive developmental disorder in children.

Lancet

1998,

351

, 637–41.6 Deer, B. Revealed: MMR research scandal.

The Sunday Times

. London: 22 February, 2004. Available from: http://www.timesonline.co.uk/tol/lifeandstyle/health/article1027636.ece (accessed 23 February 2008).

7 Greenhaugh, T. A critical appraisal of the Wakefield

et al

. paper. 2004. Available from: http://briandeer.com/mmr/lancet-greenhalgh.htm (accessed 5 May 2007).

8 Smith, R.

The Trouble with Medical Journals

. London: The Royal Society of Medicine, 2006.

9 Batty, D. Chickenpox jab should be added to MMR, scientists.

Guardian Unlimited

, 8 November 2007.10 Hawkes, N. Doctors want to combine vaccine for chickenpox

with the MMR jab.

The Times

, 8 November 2007.11 Smith, R. Chickenpox vaccine ‘will overload children’.

The Telegraph

, 8 November 2007. Available from: http://www.telegraph.co.uk/news/uknews/1568729/Chickenpox-vaccine-%27will-overload-children%27.html (accessed 23 February 2008).

12 McDade, H. They want to put more vaccines into our children. Just say no.

The Scotsman

, 17 November 2007.