Charity Commission censures British cancer charities

The Charity Commission, the government organisation that oversees all British charities, last week censured the Imperial Cancer Research Fund (ICRF) and the Cancer Research Campaign (CRC) for inadequacies in their mechanisms for supervising and evaluating research. The commission plans to consult the medical reseach community and draw up guidance on good practice for the funding of medical research by charities.

The commission began its investigation into the two charities, which between them have an annual income of pounds sterling 100m ($150m), after the publication of research that they had funded into the effectiveness of the complementary treatments offered by the Bristol Cancer Help Centre. The research, which was published in the Lancet in September 1990, showed that patients with breast cancer who attended the centre did worse than control patients who did not. The patients had not been randomised, and Sir Walter Bodmer, director of research at the ICRF, wrote to the Lancet after the initial publication to say, “Our own evaluation is that the study's results can be explained by the fact that women going to Bristol had more severe disease than control women.”

After publication of the study the number of patients attending the Bristol centre fell dramatically and the centre nearly went into receivership. One of the study's authors, Professor Tim McElwain from London University, killed himself two months after the study was published.

Pat Pilkington, one of the cofounders of the Bristol Cancer Help Centre, said that people at the centre were “absolutely delighted” with the Charity Commission's report. “Imagine,” she said, “how devastating the results of the original study must have been for a vulnerable patient sitting watching the nine o'clock news.” Many patients were horrified and angry, and a Bristol Study Support Group was founded in London. It compiled a large dossier on the study and presented this to the Charity Commission.

Robin Fox, editor of the Lancet, said last week that after he dies the words Bristol Cancer Help Centre will be found tattooed on his heart. Statistical refereeing at the Lancet has been enhanced since the paper was published. Gordon McVie, scientific director of the Cancer Research Campaign, said: “Our view is that the researchers made an honest scientific mistake during their analysis of their findings. But it was bad manners that participants in the trial weren't given the results before publication.

The Charity Commission investigated all aspects of the funding of the research and found particular problems with the supervision of the research after the grant was given. The CRC did set out the terms and conditions of the funding in a written document, but it “did not adequately set out the respective responsibilities of the supervision of the research by the funding charities, the researchers and the institute employing the researchers.” The ICRF, which rarely gives grants to outside researchers, had no written terms and conditions of funding. “No one,” the commission found, “adequately supervised the Bristol study to ensure the proper application of charitable funds...the CRC and the ICRF could not ensure that the charitable funds were properly applied.”

The commission says that in this case the cancer charities did not ensure before publication that the research had been properly carried out. “We cannot,” said Dr McVie, “review all 1000 or so studies produced by us each year before publication, and we wouldn't want to. We don't want cancer charities censoring research when they don't like the results.” Hugh Rogers, a spokesman for the Charity Commission, said that the commission had no intention of interfering with academic freedom: “Academic freedom is important but so is the proper disbursement of charitable funds.”

The commission found no problems with how the charities conducted themselves before giving the grants but said that “the practices and procedures adopted generally in the field of medical research may be insufficient to allow charity trustees who award funding for medical research to be undertaken by third parties to discharge properly their duties, as trustees.” Some medical charities are upset that the commission reached this conclusion after examination of only one unusual case. Mr Rogers said that he thought that the commission had enough evidence to begin a general discussion on the supervision by charities of the research they fund.