Children 'missing out on research benefits'

Are children getting the treatments they need?

In this week's Scrubbing Up, Professor Neena Modi, vice president for science and research, at the Royal College of Paediatrics and Child Health argues that not carrying out more research on children is hampering treatment options.

Should children be used for research?

Children and young people are being denied the right to benefit from clinical research.

There is a mistaken and outdated notion that they need to be protected from clinical research, but the reality is that children are being harmed by not being included.

The importance of children taking part in clinical research cannot be underestimated.

Children are not small adults; the medicines and treatments children receive need to be trialled and shown to be effective in them, and not simply assumed to be from the results of research in adults.

Better treatments needed

Without properly conducted studies many children will continue to be given inferior treatments.

There are many instances where an established treatment has been shown to be ineffective or harmful when subjected to rigorous and objective evaluation.

For example, it was only after many years of painstaking research that the routine use of oxygen to resuscitate babies at birth was found to be harmful.

Understandably parents may be concerned about involving their sick child in research and want to protect them from 'rogue' researchers. But protection should not mean prevention. Children need high quality research, not "no research".

Parents who have the process of clinical research explained to them usually want their children to have the opportunity to participate, but unfortunately this does not always happen.

Attitudes to children's research, even among regulatory bodies can be illogical and therefore confusing to parents.

A clinical trial aims to demonstrate that one treatment is superior to another, therefore there will be a group that benefits and one that will not.

This is not unethical because if the research was not conducted, many patients would continue to receive the inferior treatment. For example, babies would still be receiving the formerly accepted 'best' treatment of routine oxygen for resuscitation at birth and many would die or suffer as a result.

An honest dialogue should explain clinical uncertainty and that, although the possibility of risk cannot be totally eliminated, it is minimised through research regulation.

This means that there are extensive measures in place to ensure that studies are well designed, that any possible risk is minimised, and that there are processes to identify harm.

Children deserve the right to participate in research designed to improve outcomes and reduce uncertainty about treatments.

Promoting research

Health professionals and government need to do more to promote research to benefit children. The number of doctors who are educated in research methods has shrunk as the way in which universities are funded and doctors are trained has changed.

There are over 3,000 paediatric consultants in the UK but only 165 are research leaders. Not all doctors need to be research leaders but all health professionals should be trained in research methods.

Less than one in 10 NHS paediatric consultants has identified time for research, in contrast to one in four adult physicians.

What needs to change?

Parents must insist on the right of their children to participate in clinical research. Patient demand was instrumental in improving outcomes for adults with HIV and breast cancer.

New generations of doctors and nurses must be equipped with research skills.

Health services managers and regulators must ensure a supportive NHS research environment.

Research must be portrayed honestly and responsibly by the media and they must be well informed in order to reliably educate the public.

The responsibility to enable more children to benefit from research rests with all of us - parents, health professionals, managers and the media.