Patients want direct, guaranteed access to clinical trials

Simon Davies, CEO of Teenage Cancer Trust talks about automatic patient enrollment into clinical trials.

Researchers should be given automatic access to patients at the time of diagnosis says Simon Davies, CEO of Teenage Cancer Trust. It is imperative that different kinds of patients can be included in clinical trials, whether young or old, so that different uses of a particular drug can be explored and offered to various kinds of patients.

He says, “Researchers should have direct access to patients. We have to protect patients but should know where patients are. I [the young patient] don’t want them [a pharmaceutical company] to exploit me but they should know where I am as that will improve my chances of survival and it is my chance to leave a legacy.”

Past research has shown that 60 – 70% of clinical trials fail to meet their enrolment goals which disrupts the collection of timely data and product sales. Recruitment and retention problems in adult clinical trials still exist but enrolling a child or a teenager in a clinical trial has always proved more difficult whether it is due to lack of adequate information on the trial itself or problems of access.

Simon Davies, cites the latter as a problem when proposing that clinical trials should be automatically offered to patients as opposed to the current opt-in strategy that often leaves some patients out of the loop altogether. He echoes an earlier observation by Claire Eldridge, managing director for Aurora who challenged the view that it is unethical to conduct clinical trials within the paediatric population. She argued that ethics only really come into play if we do not conduct clinical research into this patient group at all.

You can understand both their views as clinical testing for children and teenagers is necessary for future treatment and knowledge. However, at the same time, you value the ethical considerations and other guidelines that are in place to protect the younger population from testing. Parents and young patients themselves are not always kept in the loop about the potential effects of a drug.

Pharmaceutical companies are often concerned with making up the numbers for testing so that they can put their product out into the market as soon as possible. However Simon feels that a lack of teenage patients in these schemes can be detrimental to drug development.

“I [the pharmaceutical company] need 10,000 patients which I can find in the 20 – 45 age range and so that will do me fine. They do not recognise that young people have different metabolisms and a teenage body reacts differently to a 40 year old. Young people are our future. We need to increase the value of their life so they can continue to be a valued member of society. If you start communicating properly with young people, you will then get it right with most patients.”

However, for now, the enthusiasm for this clinical trials initiative ends here even though this outlook has been expressed before. Simon states that it is up to the NHS to take a strategic approach to this issue and facilitate a dialogue between patient groups and the pharmaceutical industry. So patient testing interests continue to be ignored and no mandatory clinical strategy will work unless attitudes towards patient testing are changed.

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