The Dissemination of Research
8.13 New advances in CAM need to be well documented
and easy to identify. Hence, the dissemination of research findings
is an important factor in information provision for conventional
8.14 Currently the results of CAM research are published
in many different journals. Some of these are highly reputable
conventional medical journals, but others are less well-known
and the published papers are less rigorously peer-reviewed. Much
research in CAM is published in journals dedicated to CAM which
have small circulation figures and are unlikely to come to the
attention of GPs and conventional medical scientists. Indeed,
we have heard some evidence that there is a bias within the larger,
better-accepted journals against publishing CAM research, even
when it is of good quality. If this is true it must evidently
militate against the results of CAM research being properly disseminated.
8.15 Professor Edzard Ernst told us about bias in
publications during our visit to the Department of Complementary
Medicine at Exeter University. One survey the Department conducted
involved submitting two almost identical papers to CAM and conventional
medical journals. The two papers both reported fictional results
of a randomised controlled trial that showed positive results,
one for a CAM therapy, the other for a conventional therapy. They
found that the paper based on a conventional treatment was more
likely to be accepted for publication by a conventional medical
journal than was the paper which reported identical clinical outcomes
from a CAM treatment.
8.16 The fact that CAM research papers are published
in such a variety of journals, both conventional and complementary,
combined with the difficulty CAM research has in being accepted
into the more widely read conventional journals, means that the
dissemination of research findings in the CAM area faces some
special difficulties that need to be addressed. Given the diversity
of journals in which CAM research may be published, sources such
as the British Library are useful for those who would like to
survey all of the published studies of CAM. Indeed, the British
Library maintain databases on healthcare information, including
AMED (the Allied and Complementary Medicine Database) which collects
together CAM articles from about 500 journals from 1985 onwards.
8.17 The NHS Centre for Reviews and Dissemination
at the University of York (p 444) commissions and supports experts
to undertake specific systematic research reviews in areas of
priority to the NHS. They suggest that support should be given
to efforts to synthesise all the best CAM research into systematic
reviews, such as those found in the database on the Cochrane Library
CD ROM, Clinical Evidence (produced by the British Medical
Journal) and Best Evidence. They also told us that
although they have not, to date, undertaken systematic reviews
in the area of CAM, "given our experience and expertise,
if we were asked to do such reviews we would be able to undertake
them given adequate time and resources" (p 444).
8.18 The UK Cochrane Centre
has been mentioned as a useful resource by several of our witnesses.
The Department of Health suggested that the Cochrane Centre's
application of "rigorous systematic approaches" to reviewing
research offers "models that others can use and adapt to
suit different fields of reviewing". They also told us that
currently the Cochrane Database of Systematic Reviews contains
some CAM reviews, although those they could identify were a very
limited number (P 114).
8.19 The most comprehensive collection of CAM research
references in the United Kingdom is that held by the Research
Council for Complementary Medicine (RCCM).
They told us: "The need for a reliable information resource
that is accessible to both health professionals and users of complementary
medicine alike is central to the work of the RCCM. The RCCM, using
mainly charitable donations, has developed the Centralised Information
Service for Complementary Medicine (CISCOM), a database of over
65,000 references to research published world-wide since the early
1960s" (P 181). RCCM explained that such a database has uses
above and beyond simply finding out about the results of trials
into the efficacy of different therapies. "Those planning
research have used CISCOM to look at approaches used by previous
researchers. Drawing on data from resources world-wide, CISCOM
offers a one-stop shop for users. The challenge in the coming
years is to offer information to consumers that is readable, based
on research evidence, evaluated, and readily updated" (P
8.20 The RCCM also told us that they felt that there
could be useful input in this area from NHS bodies: "Emerging
NHS strategies in the information field are welcome. The National
Institute for Clinical Excellence, the Centre for Health Information
Quality and the electronic National Library for Health should
include the need to gather data as to the safety, effectiveness
or adverse effects of CAM. The RCCM is happy to be involved at
every stage of this process" (P 181).
8.21 We recommend that the NHS Centre for Reviews
and Dissemination be invited to work with the RCCM, the UK Cochrane
Centre, and the British Library to develop a comprehensive information
source with the help of the CISCOM database, in order to provide
comprehensive and publicly available information sources on CAM
research; and that resources be made available to enable these
organisations to do so.
Information for Patients
8.22 The Department of Health told us: "We believe
that it is very important that consumers have access to adequate
and appropriate information" (Q 54), and all our witnesses
have agreed. The Consumers' Association articulated how important
this is: "Our Consumers' Association remit is to lobby on
behalf of consumers to improve services and goods. One of our
core principles is that people must be able to make informed decisions
(about healthcare in this case) and that is about having access
to accessible, accurate and complete information" (Q 838).
They had done some work themselves towards filling the information
gap in this area. "Through our magazines (particularly through
HealthWhich? for example) over the last year we have run
a series of articles on different kinds of complementary therapies,
and provided readers with the information that is available in
relation to their effectiveness, and given readers advice if they
want to seek this therapy on the best way to get information and
contacts" (Q 838).
8.23 Most of our witnesses have agreed that the best
information sources whereby patients can obtain information about
individual therapies are the various professional organisations
which represent each therapy. This was the view of the Department
of Health: "The Government see it as the primary role of
governing bodies of professional groups to provide information
to the public. They are best placed to provide advice on the type
of treatment to be provided, its appropriateness, how it will
be delivered and what the patient may expect from it" (Q
8.24 One problem in this regard, however, is that
a statutory regulatory body may be unable, within their legal
terms of reference, to give professional advice, other than being
able to say whether or not an individual is a registered practitioner.
Hence, colleges of the relevant practitioners and/or professional
associations could prove to be more appropriate reference sources.
The different responsibilities of the GMC, the Medical Royal Colleges
and the BMA may serve as examples. The important question here
is how will the patients know which body or bodies to contact?
8.25 The Consumers' Association expressed concern
about the professional regulatory bodies or professional colleges
or associations being used as the main information resource regarding
each therapy: "One of our concerns
is about bodies that
are more trade associations fulfilling the main role as being
providers of information to the public about therapies. That would
concern us in a way that we feel it perhaps is not the most appropriate
arrangement to be in place. What we would look for are a number
of different approaches. First of all, we think it would be very
appropriate and necessary for a body that holds the register of
practitioners to provide patients or consumers with information
about whether individual practitioners are registered and in good
standing should they make a request that is
very appropriate. We also think that at some point it may be agreed
there is a need for a separate body" (Q 849).
8.26 In any case, while representative bodies are
useful sources of factual information - what the treatment involves,
where local practitioners are, and what different qualifications
mean - independent guidance about the general effectiveness or
otherwise of the treatment might best be sought elsewhere. The
obvious place to turn is to a GP, but unless he or she is unusually
well-informed, this is likely only to shift the problem of having
no information from the patient to their doctor.
8.27 Clearly, it would be helpful if there were some
point of reference where views on efficacy could be collected
together. It would be desirable to have indicated whose views
were represented, and the type of evidence each view was based
on (clinical trials, anecdotes, or no evidence). Patients and
doctors could then survey the various forms of advice available
and choose the recommendations of whichever group they trusted
8.28 Another problem arises if patients are not sure
which therapy is best for their condition and therefore do not
know who to contact. In such circumstances, as the Federation
of Clinical Shiatsu Practitioners explained, the process of contacting
each individual therapy organisation "becomes confusing and
costly when trying to identify which therapy would be most beneficial.
A central source, furnished with the contact numbers of the said
regulatory bodies, would be the most effective system. It may
well be worth considering the use of an established system such
as NHS Direct" (P 85). The British Holistic Medicine Association
explained that currently there is no overarching CAM information
source: "For information on
extent of service provision,
applicability of different CAM therapies to different conditions
BHMA [British Holistic Medical Association] and other organisations
- FIM, RCCM, Natural Medicines Society (NMS), etc. are
working to fill the current gap" (P 40).
8.29 The Consumers' Association told us that the
current information resources within the NHS may be able to provide
information in this area and that their role is not being maximised:
"We would look for things like the Centre for Health Information
Quality which has a remit to provide information to patients.
We would want them to include within their work information about
complementary therapies. This is NHS-funded and is specifically
about providing information to patients. We could see a role for
NHS Direct to provide information along with other organisations,
for example the College of Health. Rather than taking the leap
from here to saying we think there needs to be another body set
up, I think our starting point would be that we would like to
see the existing processes and centres for information provision
used better to provide consumers with information" (Q 849).
They went on: "For example, when the NHS published its information
strategy two years ago one of the things they proposed, which
we strongly endorsed, was the creation of exactly that, as part
of the electronic National Health Library, a site where patients
could go to look at information that had met very specific standards
set by that agency. We see no reason why information about complementary
therapy should not also be part of that. At some point there is
need for the recognition of a body specifically with responsibility
for complementary therapy and information about them to be set
up. At this point we are not confident that these processes already
in place are being used to the maximum that they should be"
8.30 The potential role of NHS Direct as a source
of information on CAM has been brought up by several witnesses.
The Department of Health were willing to consider it as a possibility.
They told us: "One of the matters on which the Department
is actively seeking views in the context of the role of NHS Direct
is how information on healthcare can be made available, and one
area is alternative medicine" (Q 59).
8.31 We see the NHS as the natural home in the
United Kingdom for reliable, non-promotional information on all
types of healthcare; providing such a home is particularly important
for CAM, where the diversity of opinion and organisations make
it almost impossible for individuals to gain an overview. Consequently
we support these plans and urge that they be carried out in the
very near future. We recommend that the information should contain
not only contact details of the relevant bodies, and a list of
NHS provision of CAM in each local area, but also some guidance
to help patients (and their doctors) evaluate different CAM therapies.
8.32 One existing information source that the Department
of Health suggested could be amended to provide an information
source for patients is the information pack on CAM they produced
earlier this year for PCGs (Primary Care Groups) and doctors.
Yvette Cooper MP, Parliamentary Under Secretary of State for Public
Health told us this was a line she was interested in exploring:
"That is quite a helpful guide to people in terms of what
evidence there is available about different kinds of therapies.
And what organisations exist to regulate them as well. That is
the kind of information people want to have" (Q 1886).
8.33 Even if the NHS did not wish to come to a single
definitive judgement on the efficacy of each therapy, there seems
to be great value in providing, in a neutral forum, a collection
of the views of the principal bodies with relevant knowledge.
Media Coverage of CAM
8.34 Other information resources about CAM are the
press and other public media. Many of our witnesses, including
the Department of Health, recognised that this was one of the
main sources of information in this area. "We see a lot of
it in the media and newspapers. From time to time newspapers carry
articles on complementary medicine, very often in features in
women's magazines and consumer programmes" (Q 54).
8.35 A recent study by Professor Edzard Ernst sought
to determine the frequency and tone of newspaper reporting on
medical topics in the United Kingdom and Germany. The study examined
four UK broadsheet newspapers and four German newspapers on eight
randomly chosen working days in 1999 and analysed the content
of all the medical articles. A total of 256 newspaper articles
were evaluated and, with particular reference to CAM, four articles
were found in the German papers and 26 in the UK newspapers. All
of those in the UK newspapers were positive in their attitude
towards CAM, whereas of the four German articles only one took
a positive attitude to CAM. On the other hand, the UK newspapers'
attitudes towards conventional medicine were more critical than
the German. Professor Ernst, communicating these findings to the
British Medical Journal, commented "
of the fact that both healthcare professionals and the general
public gain their knowledge of complementary medicine predominantly
from the media, these findings may be important."
8.36 FIM told us: "The public is increasingly
exposed to information on CAM treatment and therapies as newspapers
and magazines give ever-increasing editorial coverage on the subject.
Some, but by no means all, of this is well informed. It is therefore
essential to ensure that the public has access to high-quality
information, which is regularly updated" (Q 87).
8.37 FIM's view of the media's coverage of CAM was
somewhat cautious: "What we do is very much to welcome the
greater interest and I think this type of information is illustrative
of that greater interest. But some of the information is questionable
and unless there is some central way of kite-marking or some authoritative
place where people can go and get information, there will be a
mix of what is available locally, and it varies. I think it is
important, as my colleagues were mentioning, that there is information
in a form which is helpful for people who are looking for and
wanting to know about different treatments" (Q 86).
8.38 FIM continued by pointing out that "Newspapers
and television companies are in the business of selling their
newspapers and programmes and that very often is what determines
the story. This weekend, for example, there has been the continuing
saga of St John's Wort published in a number of Sunday
papers, and one of the stories I saw I helped the journalist with.
I gave a lot of information to that journalist and none of it
appeared in the story simply because it did not suit the very
scaremongering angle this particular story took, which is unfortunate
because there is a genuine story there. There are definite issues
around the use of this herb and we need to be aware of them, but
in some of the stories the driving need is to sell the newspaper
and unfortunately reasoned debate does not always sell newspapers"
8.39 We asked the Consumers' Association what they
thought of media coverage of CAM. They told us: "I think
we can look at this in a positive way
People are getting
a lot more information these days. The public are becoming more
discerning. There is definitely a role for individual consumers
in making their own choice about whether they follow information
or not. Having said that, it is important that information is
examined carefully. We have a rigorous process of verification,
checking with external specialists and experts before any information
is provided to the public. In the media short reports appear on
papers that have been recently published; however there should
be an impression of the general state of research in an area as
well as the single exciting new finding" (Q 850). In our
report on Science and Society we looked at the issue of
science reporting in the media, and recommended that the media
uphold a series of recommendations suggested by the Royal Society,
which included guidelines on accuracy, credibility, balance, legitimacy,
responsibility and how to report in cases of uncertainty. We again
recommend these guidelines to all health journalists. However,
in Science and Society we also concluded that science cannot
expect special treatment from the media, and it will be necessary
for bodies to work with the media as it is. Once individual professions
are organised under a single professional body, and an evidence
base has been established, it will be easier for the media to
know where to get advice and for each body to develop a relationship
with journalists to build confidence.
8.40 Health information is arguably the most common
topic searched for on the Internet, and there is a bewildering
number of sites with information in this area. As far as CAM is
concerned, the BCMA told us there has been a "proliferation
of sites" (Q 603/5).
8.41 As an information source, the Internet has significant
merits: low-cost distribution of material worldwide available
24 hours a day. It also has disadvantages: the information available
is of a highly variable quality, reputable and disreputable information
sources can be hard to distinguish, information is often unattributed
8.42 We asked several witnesses if they could think
of any way of controlling the quality of CAM information on the
Internet. Most acknowledged that currently there is no way of
controlling what people put on their sites, but several witnesses
suggested that kite-marking sites may be a viable option. For
example. FIM told us: "The idea of kite-marking seems absolutely
essential and the concept of peer review of course is normal practice
in conventional medicine and beginning to be normal practice in
CAM. If there were information resources put out on the Internet
and web sites, it would be good if they were kite-marked and peer
reviewed, and I think many people in the CAM area would welcome
that process" (Q 83).
8.43 The Natural Medicines Society believed that
instead of trying to attempt to control information "it is
more a case of setting the quality ourselves and even beyond that
being able to place a kite-mark on other sites and say 'these
seem to us to be dependable', because there is this great proliferation
now of sites both of a CAM nature and of a general medical nature"
8.44 However, several witnesses told us that kite-marking
on the Internet is a flawed process open to abuse. For example,
the Patients' Association had already experienced problems with
people using their logo without their knowledge: "Our logo
has been used as a kite-mark by an organisation that we have no
connection with at all. It was only by pure chance that we found
that, so we are actually very suspicious of any success with any
of this, frankly, on the Internet. When you discover that, how
do you police it, particularly with health in general? To do the
searches you would have to have somebody employed full-time in
every organisation checking up on this to see if their particular
logo or kite-mark is being used. The Internet is a real problem"
8.45 The Consumers' Association told us of an alternative
to kite marking which they are piloting called a web trader scheme,
which looks at the standards that some sites are operating. However
this scheme is not particularly looking at CAM sites and they
acknowledge that it "is only a step in the right direction.
We do not have a solution as to who should fund this" (Q
8.46 The Consumers' Association view (para 8.39)
that people are becoming more discerning in judging the information
that comes their way may start to reduce the widely held concerns
about the way people regard Internet information. In the meantime,
while it may be impossible to prevent people accessing incorrect
healthcare information via the Internet, it is certainly possible
to make it easier to connect to accredited, reliable sources.
There is clearly a great deal of activity in this area, and it
has not proved possible for us to investigate it all in depth.
However, sites such as the OMNI health information gateway, which
appears to offer promising initiatives (www.omni.ac.uk), provide
searchable access to Internet resources that have been quality-evaluated:
it is funded by the United Kingdom's Higher Education Funding
Councils through the Joint Information Systems Committee, and
the pilot project by the British Library and the Research Discovery
Network for a healthcare portal site, which will include CAM.
We were pleased to hear of the recent conference on CAM information,
organised jointly by FIM and the British Library, and we would
welcome any developments which would bring together the expertise
of these two organisations in creating portals or gateways for
CAM information on the Internet.
8.47 However, initiatives by organisations such as
those above may only address part of the problem. Although systems
designed for academic researchers, or by organisations whose main
constituency is already relatively well-informed on CAM, may be
used by the wider community, most people in the United Kingdom
would turn first to the NHS for information on healthcare. In
terms of web-based information, this consideration means that
any information resources on CAM provided by NHS Direct Online
or the NHS's electronic National Library for Health will be extremely
important in guiding people's choices in seeking or avoiding CAM
treatments. Although CAM may not be high on NHS Direct Online's
list of priorities as it develops and widens the information it
supplies, it should be remembered that in the absence of widely
recognised, non-promotional, and reliable information on the web,
people may be relying on low quality or misleading sources which
they have found by chance. Since many if not most patients will
also be turning to their GPs or specialists for advice on CAM,
NHS involvement in this area is inevitable. It would make good
sense for this to be backed by sound web-based information, especially
at a time when doctors might not yet feel competent to give well-informed
8.48 We are aware that the National electronic
Health Library and NHS Direct Online plan to have information
available about CAM in the future; we support these plans and
recommend that they are carried forward.