Richard Smith: Should drug companies be free to give information to patients?

Richard SmithIf a patient rings a drug company asking for information about one of the company’s drugs that he or she is taking, the company cannot answer. Companies are forbidden to “come between” patients and their doctors. Is that right?

This question was discussed last week at a conference in Monte Carlo of some 3000 regulators, drug company people and their accompanying ecosystem, academics, and patient representatives. I was on stage with Nikos Dedes, an AIDS activist, Joanne Shaw, the chair of NHS Direct and Datapharm, and Alastair Benbow, a senior doctor at GSK, in a session chaired by Mary Baker, president of the European Federation of Neurological Associations and once the patient editor of the BMJ. Perhaps surprisingly, we all took the view that drug companies should be free to give information to patients.

What we lacked was the voice that is dominant in the European Parliament and the Spanish presidency of the European Union that says no way can drug companies give information to patients except in the current, tightly regulated circumstances. This voice says that drug companies cannot be trusted to give neutral information and will inevitably push drugs in general and their drugs in particular. A deeper fear is that drug companies providing information will lead to increased spending on drugs and possibly even to the nightmare of direct to consumer advertising.

As a recognised critic of the drug industry, I was perhaps expected to provide the dissenting voice. But I’m a critic of everybody—including the European Parliament, regulatory bodies, patients, medical journals, and  myself—and I’m passionately in favour of free speech and against paternalism in all its forms. So my moderately anarchic message was “let the drug companies say what they want to whom they want, but I advise you not to trust the companies or anybody else: critically examine the evidence and make up your own mind.”

Nikos took a somewhat similar position, saying that patients were hungry for information on drugs and wanted it from wherever and whomever. He did think, however, that patient organisations might be best placed to produce the information as they had the deepest understanding of the needs of patients.

An internet survey of some 500 people, 90% of whom were patients, that Joanne presented confirmed that people very much want information on drugs—particularly on what the drugs are for, how to use them effectively, comparative efficacy, interactions, side effects, what lifestyle changes would benefit them, and whether the drug will work for them. They are seeking this information to make decisions, including whether to change to another treatment. Joanne’s view, which was shared by everybody on the panel, was that no single source of information could meet all these needs and that we needed a plurality of sources, including drug companies.

Alastair thought that companies had something to offer, not least because they have more complete information on their drugs than anybody else. He was against direct to consumer advertising and thought that many American companies would like to give up the “arms race” of direct to consumer advertising.

Perhaps a more important question than whether drug companies should be able to provide information is whether our current sources are adequate—and clearly they are not. Patients have difficulty finding information on comparative efficacy. We know that many patients do not benefit from the drugs they are taking, but we don’t know which they are. Then it is patients with multiple long term conditions who make up most of the work of health care systems, and yet the evidence is almost all from trials conducted on patients with single conditions. Good information for the many patients with comorbidities is seriously lacking. I worry too about bias in the evidence base when most trials are conducted by drug companies.

Perhaps if they had been with us, members of the European Parliament would have agreed with all of us on the panel that our present information sources are inadequate, that we need improvements and a plurality of sources, and that drug companies could usefully do more than they are allowed to do at the moment. Or, then again, perhaps they wouldn’t.

Competing interest: RS had his fares on Easy Jet paid by the conference organizers. His wife had to pay for herself. The organisers also paid for two nights in a fancy hotel overlooking the sea and two slightly disappointing breakfasts. His wife stayed in the hotel and ate the slightly disappointing breakfasts for free. Unused to the jamboree of international conferences, she also hoovered up a lot of free pens and a towel.