WEDNESDAY 21 JUNE 2000

DR JESME BAIRD

  572. I now call Dr Jesme Baird of the Roy Castle Lung Cancer Foundation.
  (Dr Baird) Though my background is as a medical oncologist, I have to confess that I am addressing you today not as a medic but as a representative of the patients who phone the Roy Castle Foundation information helpline. We estimated that around 15 per cent of the calls to our helpline are actually research enquiries. That represents about seven or eight calls a week to our line. Patients can easily be divided into those who are already involved in cancer research and those who are not. Clearly, I would suggest, the principles of informed consent, as contained in the Helsinki Declaration, should be implemented, ensuring that all patients entered into clinical research trials are suitably aware of the expectations and consequences. I have to say that for the vast majority of those patients who contact the Foundation and who have taken part in research trials, informed consent is obtained. Clearly this group may not be representative as in contacting us these patients are a self-selected group, having taken the step to seek out further information in the first place. In all cases where patients involved in research trials have contacted us with complaints and concerns, it has been as a result of lack of information on side effects anticipated or an unrealistic expectation of the outcomes anticipated. It is clear from patient comment that in the main those who participate in clinical trials, irrespective of tumour response, do derive hope from the involvement and benefit from regular contact and follow-up by cancer clinicians. For these patients their symptom control tends to be better monitored and better looked after. We find however that the majority of research enquiries we get are from those who are not currently involved in clinical trials. For the majority of those the enquiries surround information and access to research, in particular with new agents. There are five recurring themes which we feel are appropriate to bring before this Committee. The first one is that there is no doubt that patients view participation in research studies with new therapies in particular as offering hope. Secondly, though willing to participate, few patients are offered entry into clinical trials. Thirdly, access to information on what appropriate clinical research is being carried out, and where, is not readily accessible to patients. Fourthly, patients in particular want more access to information on new drugs and therapies which they hear about through the media and through the internet. Fifthly, if there is any possibility of improvement, patients are quite prepared to travel long distances. May I take each of those five points and expand just a little? Firstly, patients view participation in research studies with new therapies as offering hope. Although lung cancer is a common disease with around 40,000 cases diagnosed each year in the UK, the outcomes with standard treatment are somewhat poor. Only 5 per cent will survive five years, with around 80 per cent dying in the first year. In such a seemingly hopeless situation and once local treatments have been exhausted, research is seen as the only option, a final lifeline. There is a belief that "Even if it's new and fairly untested at least I'll be trying something". Research is therefore not only the process whereby science and knowledge is advanced but is also a means of offering hope to cancer patients. My second point was that, though willing to participate, few patients are offered entry into clinical trials. Clearly there is marked regional variation, access being determined by the clinicians to whom the patient has been referred. Sadly for lung cancer, this is dependent on the clinician's personal involvement in such cancer research or the knowledge of the clinician on ongoing trials. My third point was that access to information on what appropriate clinical research is being carried out, and where, is not readily accessible. Fourthly, in particular, patients are looking for information on new drugs and new therapies. On a daily basis we hear about major breakthroughs and miracle cures. Patients, however, find they do not have access to these and get very frustrated. My fifth point was that patients will travel long distances and we very often hear from people who have been to the States or been to the continent looking for hope and new therapies. I should like to leave you with three thoughts. Patients involved in clinical trials do derive hope and benefit from their participation. However, many more would welcome the opportunity. Secondly, patients, voluntary organisations and, I would suggest, all doctors who care for cancer patients need better information on the research currently being undertaken. Finally, a widely circulated accurate register from all UK cancer research sources would improve coordination in general and represent a major step forward. I thank the Committee for their attention.

  Chairman: Thank you very much indeed; very timely. Thank you for keeping to the time we allotted and thank you for your evidence.