Meetings & Conferences

Dr Banks said that the provision of information had to be a partnership between professionals and patients, but the needs of professionals to be involved should not be ignored either. "It takes two to tango."

One of the problems of getting health information over to young men was that they did not often visit the normal sources of this information, such as doctors' surgeries or pharmacies. Ways had to be found to deliver information that took account of their lifestyles and interests. He cited examples such as using the internet and placing posters in toilets.

Dr JUNE RAINE, head of the Medicines Control Agency's post-licensing division, said that information that was authoritative, accurate, unbiased, timely, up to date and understandable was what medicine users wanted. Providing such information did matter because it could lead to faster treatment, better compliance and, ultimately, improved health outcomes.

Studies had shown that in patients with asthma or diabetes education and self-management of their conditions could have immediate and significant benefits.

Talking about patient information leaflets (PILs), Dr Raine said that one of the problems with these was the side effects listings. These could be frightening to patients and research had shown that patients had difficulties in understanding the risks they personally faced. For example, one study had found that on average patients believed that a side effect officially described as being common (occurring in 1 to 10 per cent of users) would occur in 45 per cent of cases.

"If patients cannot evaluate the risks happening to others, they will not be able to take decisions about their own care. Do we need to use more visual symbols?" she asked.

The European Commission is currently reviewing its legislation relating to pharmaceuticals. Final debates on the matter are to take place in July with the aim of producing updated legislation in 2004. From the United Kingdom point of view, the MCA believed that more could already be achieved to provide better information within the existing regulations. "We need to change from rooting out bad practice to promoting good practice."

Patients' information needs

Although many patients want more information about their conditions "not all patients want information thrust at them," EVE KNIGHT, chairman, British Cardiac Patients Association, warned. Many older patient were happy with the "doctor knows best" approach and wanted others to make decisions for them. "This has to be fine for some people," she said.

STEVE MANN, vice-president for European research and development, Johnson & Johnson MSD, spoke about self-care in patients with coronary heart disease with reference to the possible switching of statins to pharmacy medicine status: "These people are not currently patients, so current ways of delivering information do not apply to them. We want to turn them into empowered individuals, not patients."

The National Service Framework for Coronary Heart Disease sought treatment with statins for all patients with a 30 per cent 10-year CHD risk. "In the 35- to 69-year-old population, mostly the ones who actually pay for their prescriptions, this would be around one million people. If you move to the 15 per cent risk level it becomes between four and five million," Mr Mann said. This had considerable implications in terms of health professionals time and prescribing budgets.

Mr Mann said that large-scale public information campaigns would be required in order to raise awareness among the public and create a willingness to attend screening programmes and modify lifestyles.

Screening, perhaps in pharmacies or at places of work, would divide people into high, intermediate and low risk groups. The intermediate risk group would be suitable for self-care using non-prescription medicines.

"We would need to build a three-way relationship between people, pharmacists and brands. There is a reasonably good model for this in nicotine replacement therapy." Creative use of telephone helplines and websites would be needed to establish, support and maintain relationships.

Is DTC advertising necessary?

Heavy direct-to-consumer (DTC) advertising, as seen in the United States, is neither being proposed nor wanted in Europe, PAUL WOODS, global promotions manager, AstraZeneca, said, opening a session on whether advertising was necessary to achieve excellence in consumer medicine information. However, Europe could learn from the US: two lessons were that DTC advertising worked and that it reached a wide audience.

Mr Woods believed that the pharmaceutical industry in the United Kingdom could provide more information for users. High standards would be necessary, but the industry was used to working within codes of practice.

"Customers will seek information from a variety of sources and should be encouraged to do so — it is their right. The quality of the information should be the determinant of whether it is made available. Just because it carries a company logo should not make it unacceptable."

He believed that UK companies should be able to make UK information through their own websites, and that the addresses of these should be included on packs so that users knew where to look for the latest information. "This commonsense practice is actually illegal in most European countries." He also wanted to see more disease awareness campaigns being run.

WENDY GARLICK, principal policy adviser, Consumers Association, said that disease awareness campaigns had been the route to full DTC advertising in the US. She questioned whether these campaigns were designed to raise awareness or to sell brands.

In the US, DTC advertising had led to medicalisation and misdiagnosis by consumers, distorted prescribing patterns, and a move from seeing treatment rather than prevention as a starting point.

PETER CARDY, chief executive of Macmillan Cancer Relief, said that the appetite among the public for information about their health was both insatiable and irreducible.

He noted that legislation permitted the advertising of any number of things, such as cars and household cleaning agents, which could be both beneficial and harmful, depending on their use. "The public are not fools and they are used to taking advertising into account in the decisions they take."

He pointed out that much of the information relating to medicines did not address what they actually meant to patients. Clinical benefits from many drugs could be quite small in practice.

One consequence of not allowing pharmaceutical companies to use DTC advertising was that they had ended up looking tortuous — promoting patient groups and awareness campaigns while carpet-bombing prescribers with information.

Echoing Mr Mann, Mr Cardy said that the first step necessary was a programme of public education on the real benefits of medicines, the risks of treatments and the true costs of medicines and their production. "This needs to start with the lay media and its constant search for wonder drugs," he said. The programme would be a precursor to the lifting of restrictions on advertising.

"The Department of Health does not seem interested in this. The MCA is not funded to do it. So that leaves the industry as the only ones with the will, the experience and the financial ability to carry this out."

One suggestion raised in the subsequent discussion was whether advertisements for medicines should carry a more simplistic star rating with, for example, marks out of five for the chances that a drug would have a meaningful effect on a patient or for the seriousness of side effects that might be encountered.

Mr Cardy said that licensing decisions were already complex and such ratings would be hard to achieve. However, he was also concerned that if advertisements were overregulated or contained too much small print they might not actually have any impact.

Mr Cardy went on to suggest that a levy should be imposed on the pharmaceutical industry which would be used to pay for advertisements promoting the use of generic medicines or other treatment options, running against the industry's own product specific advertising. Mr Woods rejected this as simply another tax on the industry.

Digital television and the National Health Service

JULIAN WALSHE, consultant to Telewest's Living Health channel, described how a pilot version of providing NHS Direct through a digital television service in Birmingham was reaching more elderly and poor people than conventional means.

Viewers using the service can gain access to a range of pages of information on specific health topics, the most popular of which is "Illnesses and their treatments". The service has also investigated allowing patients to book appointments directly with general practitioners — a service popular with retired people — and setting up video links between NHS Direct nurse advisers and callers (known as NHS Direct inVision).

"We thought the biggest advantage of the links would be the ability of nurses to show video clips of subjects under discussion, but our reviews suggest that in fact the ability to see body language leads to clearer discussions and greater reassurance for callers," Mr Walshe said.

Use of the services has been higher than average among the elderly and those in the C2DE socioeconomic groups. These groups have lower than average use of the internet.