I.  Though my background is as a Medical Oncologist, I make this statement, not as a medic, but as a patient representative, in order to communicate the views expressed by lung cancer sufferers, through the Roy Castle Foundation's UK wide Lung Cancer Patient Care and Information services. We estimate that around 15 per cent of calls to our Helpline are research enquiries.

  II.  Patients can be divided into those who are already involved in clinical research and those who are not.

  1.  Clearly, the principals of Informed Consents, as contained in the Helsinki Declaration (Annex) should be implemented, ensuring that all patients entered into clinical research trials are suitably aware of the expectations and consequences. 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 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—eg better control of symptoms.

  2.  The majority of research patient enquiries however, surround information and access to research trials, in particular with new agents.

    There is no doubt that patients view participation in research studies with new therapies, as offering hope. Although lung cancer is common, with around 40,000 cases diagnosed each year in the UK, the outcomes with standard treatment are poor. Only 5 per cent survive five years, with around 80 per cent dying within one year of their diagnosis. 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 it 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.

    Though willing to participate, few patients are offered entry into clinical trials. Clearly, there is marked regional variation, access being determined by the clinician, 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 entry criteria and referral procedures elsewhere. Those patients referred to Cancer Centres for treatment are more likely to be enrolled into clinical trials. For the patient, entry is therefore something of a lottery.

    Access to information on what appropriate clinical research is being carried out and where, is not readily accessible to patients. Clearly, there are many cancer patients who are unsuitable or who do not wish to participate in research. In our experience, however, patients do wish to be given the information and wish to be offered the choice of exploring the possibility. Information on the type of research being carried out, where it is and the relevant entry criteria, are not readily available. Often their clinicians are unable to provide this information.

    Patients want more access to information on new drugs and therapies, which they hear about through the media or from the Internet. With claims, seemingly on a daily basis, of "major breakthroughs" and "miracle cures", cancer patients become frustrated when told that such therapies are not available to them. There are usually good reasons for this. However, when announcements of proven cancer research initiatives are made, it is important that patients can access further information, in order to avoid the disappointment of raised false hope.

    If there is any possibility of improvement, patients are quite prepared to travel long distances. There is a popular belief that cancer patients, in particular those who are incurable, are unwilling to travel to receive treatment. This is not the general opinion expressed to us. The Foundation have had contact with patients who have, at their own expense travelled to the Continent and the United States, seeking new treatments for which there is no scientific benefit, only to have their hopes dashed by the outcome. If research offers the only avenue of hope, distance is often not an issue. Patients should, therefore, be empowered with the information and given the opportunity to make the choice to travel.

  III.  As an organisation providing information and support to lung cancer patients, we at The Roy Castle Foundation, often find it difficult to answer many of the specific questions patients ask about cancer research. Existing research needs to be better co-ordinated, with information on specific projects being more easily accessible to patients, to supporting organisations and amongst cancer professionals.

  IV.  It is clear, that the lung cancer patients, with whom we have contact, do view research as a source of hope, when standard treatments are unable to offer a cure. These patients want more information made available to them.

    With so many different sources of cancer research initiatives, I accept that co-ordination is difficult. However, some form of compulsory register, including study entry criteria, which would be easily accessed by patients and clinicians, would be beneficial. Better informed patients and doctors, will undoubtedly improve the quality and quantity of referrals to researching clinicians. This should result in an increase in the number of patients involved in clinical trials, and so benefit patients, cancer research and ultimately the future of cancer care.

    Clearly my experience is with a selected group of lung cancer patients. Perhaps the views, experiences and concerns of cancer patients in general, need to be assessed and addressed, after all, patients are of vital importance in the cancer research process.

  V.  In Summary

—  Patients involved in clinical trials do derive hope and benefit from their participation. However, many more would welcome the opportunity.

—  Patients, voluntary organisations and all doctors who care for cancer patients need better information on the research currently being undertaken.

—  A widely circulated, accurate register from all UK cancer research sources would represent a major step forward.