Public awareness and involvement

Before they were asked to join a trial, the people we talked to had different levels of awareness of clinical trials and medical research. Some knew practically nothing, while others already knew a lot (including a few scientists and doctors). In between was a group of people who had heard something about them. So for example, Wendy (Interview 02) said she did know trials went on, but it wasn’t until she read a leaflet in the waiting room that she learnt about early Phase 1 and Phase 2 trials. (See ‘What are clinical trials and why do we need them?’)

 

Some people had only heard negative information, often mentioning the incident at a commercial research unit based at Northwick Park Hospital in 2006 when 6 healthy volunteers in a Phase 1 trial became extremely ill. Marie (Interview 25) said, “The only information that I heard about clinical trials was bad information… about a year ago when all those boys had clinical trials and they all went wrong.”

 

Angela felt it was a shame that this might put people off.

 

 

Whatever their own levels of knowledge, the great majority of people felt it was important to do more to raise public awareness, and that finding out about trials for the first time when you were already ill and feeling anxious was not the best time.

 

 

Using newspaper and magazine articles, adverts, TV and the internet were suggested as ways to spread understanding, and Joanna thought the occasion of the 60^th anniversary of the NHS could have been used to reflect on the value of research.

 

 

The idea of including more in TV dramas or documentaries was especially popular. Sarah (Interview 38) suggested something “like a series of ‘House’, with some handsome doctor who’s doing all the trials.”

 

 

Alex thought more general science teaching in schools could help, and Lester thought Citizenship classes might be a place to discuss trials.

 

 

However, Jenny pointed out that not everyone will want to know.

 

 

There were mixed views about how possible it was to improve understanding about what many felt was a very complex topic.

 

 

Others felt that most people could instinctively grasp the principles of clinical trials, provided they are given clear explanations. As Amanda said, “I do a lot of training of patients, teaching the public, and people are quite capable of understanding, you know, if you just talk to them sensibly. People have no problem with understanding this at all.” Hazel agreed.

 

 

Several people became so interested as a result of their own experiences (both good and bad) that they have since become actively involved in a range of lay research roles. The NHS National Institute for Health Research funds an organisation called INVOLVE, which aims to “promote and support active public involvement” in health and social care research. Their website lists current opportunities to get involved, for example serving on ethics committees or trial steering groups, commenting on information leaflets, or advising research bodies on priorities for future research. INVOLVE defines active involvement as different from simply taking part in a study.

It means:

 

 

As a partner in the UK Clinical Research Collaboration, INVOLVE has also led on the development of People in Research - a web resource for members of the public who want to get involved in shaping and influencing research.

Lester first got involved after his son died of Creutzfeldt-Jakob Disease (CJD) when he was chairing a small charity for people with the condition. After being invited to a meeting to consult families about how to design a trial of treatments for CJD, he went on to become a lay chair of the trial steering group.

 

 

Others became involved through various NHS and other research organisations.

 

 

Celia explained how she was there to give a patient’s view on research proposals and plans, but sometimes wondered whether she was making much difference. Several people commented that, although patient and public involvement has come a long way, there is still a danger of it being tokenistic, and not taken seriously by professionals, but as Rosamund pointed out, common sense opinions from ordinary people can make trial information much easier to understand. (See also ‘Appointments, monitoring and questionnaires’ and ‘Information and questions’).

 

 

 

Hazel went from knowing nothing at all about trials to helping to write the book ‘Testing Treatments’  and lecturing on trials. She agreed that it can difficult to know what difference public involvement makes, though she still feels it is the right way to go.

 

 

Hazel also discussed some of the problems of language around patient and public involvement. She prefers the word ‘people’ to ‘consumers’ or ‘users’, and suggests patients and doctors are all people who need to work in partnership. She also notes that the idea of how ‘representative’ individual patients can be raises concerns for some people, but this does not matter provided everyone is open about what they are doing. Other views are always welcome.

 

 

As well as the INVOLVE and People in Research websites, you may like to visit the ‘Get randomised’ campaign, the James Lind Alliance which brings patients and clinicians together to identify and prioritise important research topics, and the ThinkWell site.