‘The NHS will do all it can to ensure that patients….are made aware of research that is of particular relevance to them. The NHS is therefore putting in place procedures to ensure that patients are notified of opportunities to join in relevant ethically approved research.’ (p.51)
Many people we talked to supported the principle that all patients should have the opportunity - or even the right - to take part in research.
A few people really wanted to join a trial but were disappointed to find nothing suitable was available locally.
Anthea (Interview 39) had met a fellow participant in one trial who lived many miles away but had asked to change hospital so she could take part. Anthea felt it was, “A postcode lottery as to where the trials take place.” Joanna agreed that it varied from place to place; in some hospitals the environment was very research-focussed and it was almost assumed you would take part.
There were concerns that staff in some places did not know what trials were available or who was eligible, so patients had to do their own research. Jayne felt she had been actively discouraged, but she was fortunate because she knew a lot about clinical trials from her PhD studies and her husband was a doctor who could help her organise a referral elsewhere.
Clearly it helps if you yourself know about research and have the confidence and the contacts to make your own arrangements. Julian felt it helped that he worked in scientific laboratory research and that this made staff feel more comfortable sharing detailed information with him about trials and the possible risks. He had heard about a new Phase 1 cancer trial from his consultant and from other sources, and searched for more information.
Since being in a Phase 2 trial himself 15 years ago, Tom has become a consumer representative in Scotland advising on research. He believes it is important people are given the right information and are able to challenge what they are told.
As Tom notes, not every trial is suitable for every patient. There may be good reasons why someone should not be included in a trial, either for their own health or for the scientific validity of the trial. (See also ‘
Why people may not be eligible for a trial’). But sharing information about eligibility criteria can help people find a trial that is suitable.
Others agreed that empowering people to find out more was a vital step. Amanda (Interview 22) commented:
‘I’ve been disappointed when I talk to doctors and nurses who just believe everything they have ever been taught, and are quite unquestioning about the things that they do. And I think the public have a right to better treatments….
We should teach people about this, and then they’ll demand the research evidence and for research to be done.’
The
NHS Choices website is developing a resource listing current trials. When completed, this will be available from their information page.
There are some websites listed in the UK Clinical Research Collaboration booklet on
Understanding Clinical Trials where information about research opportunities can be found.
However, it is important to remember that there may not be a trial which is suitable for you.
Immediately after the diagnosis of an acute illness may not be the best moment for people to think about clinical research for the first time or find out what trials are running. As Gill said, even though she asked about research opportunities she did not pursue it because of “the difficulties of just coping with this diagnosis.” (See also ‘
Public awareness and involvement’ and ‘
Being asked about taking part in a trial’). However, she also wondered if sometimes doctors are too afraid to ask.
On the other hand, people with long term conditions have more time to investigate research into their condition. Amanda had even tried to set up an ‘n of 1’ or ‘number of 1’ trial on treating her rheumatoid arthritis. She would have been the only participant and would have switched between a placebo and a drug she had not taken before, without knowing which she was taking. (This is known as a crossover trial design). It was disappointing to be told she needed to get the approval of a research ethics committee first. Research ethics committees play an important role in checking that any new trial is ethical, but in this case Amanda felt it was unnecessary because she was the only person who needed to consent and it was her own idea.
(Amanda has set up a site called
Thinkwell where members of the public can help design and participate in trials on topics where there is currently not enough evidence).
Over time people with long term conditions may become quite expert in finding out about research, and building up relationships with local trials units and academic departments. Fenella advises others to be active in finding information and not to be afraid to ask.
Anton agreed, and also recommended looking for information through support groups and adverts in local papers. However, he felt researchers could be more user-focussed, as patients may waste a lot of time trying to get in touch.
Some people had got themselves onto databases run by research institutes or drug companies so they could be contacted in future about other trials relevant to their health. However, it was not always easy to know how to make contact in the first place.
Sergio (Interview 37) was also concerned at how to reach people who might come forward or even know how to volunteer. “Some people like me will answer easily, but are there many like me to co-operate?”
