1.  BREAST UK

  Written submission has already been made. [27]We should like to expand this in the area of complementary care. A plea has been made by the group supported by Nicholas Winterton MP (who has sponsored an EDM on Integrated Cancer Care) for different methodologies to be developed for complementary medical research (and the House of Lords has also been studying this topic). Randomised controlled trials are rarely appropriate in this field. An integrated, holistic approach is required: holistic medicine requires holistic research.

2.  CRAWLEY CANCER CONTACT

  We have been commissioned to carry out collaborative "action" research with West Sussex Health Authority using focus groups and questionnaires, with the eventual aim of improving cancer care in West Sussex. We think many improvements could be made by changing the culture of cancer care to one of collaboration and partnership, and we hope our work itself will model the outcome we desire. If successful, this could be a low-cost way of improving cancer services, and could serve as a model for similar projects in other areas. Again, research methodologies need to be imaginative.

3.  INFORMED CONSENT

  We are very concerned about this issue, especially in view of recent national problems that have come to light, and would like to make further representations. We are sad to report local instances of (a) a research protocol not being submitted to a local research ethics committee before enrolling patients; (b) proper informed consent procedures not being followed.

4.  PATIENT-CENTRED RESEARCH

  Patients' views must be taken account of in designing research. Many patients involved in clinical trials point out that researchers imagine that their intervention (eg a drug) is the only one that matters. The fact is that patients do many other things to help themselves. These factors may be crucially important, but do not feature in clinical notes so are not measured. A patient may be well-informed, use a range of complementary therapies, attend a support group (which Spiegel et al have shown may double survival time), as well as taking a certain drug. It is unlikely that taking the drug alone is responsible for his or her survival. Randomisation is supposed to iron out such variable factors, but we cannot be certain that such is the case. It has been said that trial results cannot be extrapolated to the general population of patients anyway since patients enrolled in trials are a selected population. Whatever the truth of the matter, patients need to be involved in discussions about methodology and their contributions could well be valuable.

5.  THE DISSEMINATION OF RESEARCH RESULTS TO THE PUBLIC

  We deplore the way in which research results are "hyped" by the media in a way that can seriously mislead the public and harm patients. However, this is not due simply to journalists, but to the press releases from cancer research charities that give a distorted "spin" to research findings. A recent example is the "spin" given by the ICRF to a letter about breast cancer mortality rates in the Lancet from Peto and colleagues. The letter itself was unremarkable and said nothing new; the press release attributed the decline in mortality rates largely to the use of tamoxifen, grossly misrepresenting the content of the Lancet letter.

THE PRESENTER

  Heather Goodare, who will be presenting the evidence, is a 13-year survivor of breast cancer. She was a "subject" in the discredited study of women with breast cancer attending the Bristol Cancer Help Centre, led the support group that challenged the study, and edited Fighting Spirit, the stories of women in the Bristol breast cancer survey (Scarlet Press 1996). She was invited to serve as a consumer representative on the Editorial Board of the BMJ and the Advisory Committee of the Cochrane Cancer Network. Originally a publisher's editor, in 1992 she qualified as a counsellor with a postgraduate diploma from Brighton University, and now edits the newsletter of the National Association of Cancer Counsellors. She co-founded Crawley Cancer Contact in 1990, and BREAST UK in 1999. She translated An Introduction to Psycho-oncology by Patrice Guex (Routledge 1994), and is a frequent speaker at medical conferences, representing "consumer" views. She is a Fellow of the Royal Society of Medicine, has contributed several articles to medical and psychological journals and books, has peer-reviewed for medical journals and has reviewed research proposals for the Health Technology Assessment Programme. She contributes to the work of the Consumers in NHS Research Support Unit.

June 2000