Select Committee on Science and Technology Sixth Report


CHAPTER 8: INFORMATION

8.1 The popularity of CAM raises important questions in terms of information provision and validation. For a patient or a doctor wishing to find out more about a CAM therapy, information will be required to answer the following questions: What is involved in the treatment? What conditions do its advocates claim it can treat? What is the evidence to support these claims? What might be the side- effects? Whose views can I trust? For patients, two further questions are likely to be: What does my doctor think about it? and What conventional medical treatment should I compare it to? Doctors are likely to ask: What is the consensus medical view?

8.2 If once these questions are answered the patient or doctor decides they would like to consult or refer to a CAM practitioner, another set of questions arises: Is the treatment available on the NHS? How much does it cost privately? Where are the local practitioners? Which ones are well-qualified and proficient?

8.3 Healthcare administrators may wish to have other types of information, such as the latest publications on delivery systems for CAM, or figures covering the latest trends in CAM use.

8.4 Although in many circumstances needs for, and uses of information by, doctors and patients overlap, there are particular issues which are more relevant to one group than the other, and in this chapter we address separately information provision for doctors and healthcare professionals, and for patients.

8.5 Towards the end of our Inquiry a conference was organised on the subject of information sources in CAM[50], and we have tried to include some of the items which were raised there in this chapter. However, the quantity of information on healthcare, including CAM, which is now available, is immense and increasing rapidly, and we have not been able to address all the various sources in depth.

8.6 FIM told us that the current state of information provision in the CAM area was patchy and disorganised. "There are some useful sources of information for patients and doctors regarding complementary and alternative therapies, but these are disparate, reflecting the fact that much of CAM is provided outside the NHS" (Q 87).

Information for Healthcare Professionals

8.7 Doctors need access to good quality information concerning CAM. This is especially true for GPs, nurses and pharmacists, all of whom are often used as health information resources by the general public. Healthcare professionals need information not only to answer patients' queries about their treatment options, but also to understand what their patients are talking about if they discuss their use of other therapies.

8.8 We heard from Dr Simon Fradd, a GP, giving evidence for the BMA, about the problems doctors currently face due to the variable quality of information available about CAM. He told us: "There are real problems about quality control of the data that we are getting. At the moment we are still at the stage of being able only to discuss the concept of referring to an alternative practitioner rather than having an evidence base that says 'in back pain you should take this step if you have found these features'. My own committee at the BMA, the General Practitioners' Committee (GPC), published guidance in July last year for items that should be taken into consideration when a colleague is thinking of either delegating or referring to an alternative practitioner. What that indicates is that any of this information as it develops needs to be shared between the various professions" (Q 361).

8.9 In Chapter 6 we discussed the need for medical, nursing and other health-care education to incorporate CAM familiarisation courses into their training curricula. This is the first important step towards making sure that healthcare professionals are well-informed about CAM. However, information delivery needs to continue beyond the years of undergraduate education so that doctors can keep up with advances in the field and can, with changes in patients' demands, expand their knowledge of areas especially relevant to their practice.

8.10 The BMA also believe that the representatives of individual therapies should be in charge of collating information for each such discipline. They told us that CAM professional bodies should work with others and look at examples of best practice in the field to guide them. "They should then work with others and that might be in other specialities of CAM or it might be people in conventional medicine, and it might well be patient groups and others, to try and put together information both for the public and for conventionally trained doctors. There are a lot of examples where guidelines have been issued by organisations including the Medical Royal Colleges, increasingly they have been from the National Institute for Clinical Excellence, on clinical areas…" (Q 357).

8.11 It is also important that conventional healthcare individuals and organisations can identify and contact the lead professional bodies in CAM. Guidance is needed in this area, especially in the case of the more fragmented therapies which have several representative bodies. It would be helpful if each health authority had available a CAM information pack giving contact details of the different professional bodies, and a directory of CAM services available in the area as they do for dentists. This idea was supported by FIM (Q 85).

8.12 A positive move has recently been taken in this direction as the Department of Health, together with the NHS Executive and the National Association of Primary Care Groups, have produced an information pack about CAM for primary care groups. This was distributed to all PCGs and is available on the NHS website. This pack identifies the main bodies representing the therapies most commonly used in primary care. It is discussed in depth in the next chapter. However, although this pack addresses some of GPs' information needs in relation to CAM, it is a national document and so does not address the need for local directories of CAM services, nor does it cover all the main CAM disciplines.

The Dissemination of Research Findings

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 healthcare professionals.

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[51] 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)[52]. 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 181).

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 60).

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 most.

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…the 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" (Q 852).

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 "…in view 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" (Q 88).

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.

The Internet

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 or out-of-date.

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" (Q 1571).

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" (Q 916).

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 851).

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 advice.

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.


50  
On 31 October 2000 by the Foundation for Integrated Medicine and the British Library. Back

51   The Cochrane Centre was opened in 1992. It supports the preparation of systematic reviews of randomised controlled trials of health technologies. Several other countries (USA, Canada, Australia, Denmark, Italy, Germany) have opened similar centres to form the "Cochrane Collaboration". Archie Cochrane was an epidemiologist working in Wales in the 1970s, a powerful supporter of randomised controlled trials and author of Effectiveness and Efficiency, an influential monograph. Back

52   The RCCM is a charitable organisation, which should not be confused with Government research councils PPARC, EPSRC, NERC, MRC, ESRC. Back


 
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