WEEKEND COLUMNISTS To be a “guinea pig” in a clinical trial is not an experience people volunteer for lightly. We need only think of the dramatic side-effects of the so-called Elephant Man drug trial at Northwick Park in 2006 to be reminded that volunteers can end up worse off. In that case, there was financial reward for the unfortunate guinea pigs, though most trials do not offer cash incentives. Either way, the prospect of being given drugs or operated on is daunting when we suspect a lack of emotional care and consultation.
Even the term guinea pig has outmoded and unethical connotations. People taking part in clinical experiments should not be seen as unknowing animals. Indeed, a number of recent experiences have convinced me that we need to redefine the term human guinea pig to mean an active, able and knowledgeable person, who agrees to participate in research. In order to make this happen, patients need to be involved as much as medical experts.
Not long ago I attended the launch of a new service on healthtalkonline, the website of the research charity Dipex. Founded by GP Ann McPherson, who at the time had breast cancer, and Andrew Herxheimer, who had undergone a knee replacement, the website provides an archive of videos in which people talk about their medical experiences.
Browsers can watch fascinating and frank testimonies: patients discussing how they coped with cancer, or parents explaining how they manage a child with autism spectrum disorder. The new section is devoted to patients’ experiences of clinical trials: how the subject was approached, what they felt about the choices, what they would like doctors to know and how they felt they were treated. It is a fabulous resource. Other people’s experiences can help us find a path through our own. Much of it is insightful and much is moving.
The other striking insight I gained recently came from a paper written by Mary Dixon Woods, a professor of medical sociology at the University of Leicester, and her colleague Carolyn Tarrant. While investigating the reasons people take part in clinical trials, they found participants expressed a desire not only for better care, but also to do something for the public good. Crucially, people looked for signs of trustworthiness in the researchers before opting to take part.
If services such as healthtalkonline succeed, I believe there will be a greater chance of public participation in clinical trials. It is not just researchers who could outline the uncertainties of current treatments and the need for trials, but the patients themselves. With ordinary people influencing the kind of research they want, the dots could start to join up. The guinea pig needs to evolve.
Margaret McCartney is a GP in Glasgow.
margaret.mccartney@ft.com
For lively discussion of the latest medical issues go to the FT’s Healthblog
