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How to get involved

To find out if there is research you can participate in ask your hospital doctor / consultant or your GP. You can also read about some of the trials we have on ‘Our Research’ pages.

Your doctor will look at the criteria, called ‘inclusion / exclusion’ criteria, which are used to make sure that only people who will benefit in as safe a way as possible are included in the study. The criteria will give guidance about issues such as your age and the stage of your illness. If your doctor deems that you could be considered for the study they will discuss the study with you in detail and you will be given time to think about whether taking part is the right decision for you.

If you are approached about taking part in a study, the final decision to take part will be yours. If you start in a research study and change your mind you can pull out at any time, and this will not affect the quality of your ongoing care at the hospital. If you decide not to participate, you will still be treated using the best currently available methods.

Patient and Public Involvement in Research

The National Institute for Health Research (NIHR) is supporting a major initiative that aims to increase the involvement of patients and public in research. The motivation to increase public involvement in research is democratic (i.e. accountability and transparency) and quality (i.e. issues of relevance etc). You can read more about patient and public involvement in research in the links below.

Our patients’ stories

Shirley, 82, is a patient with Chronic Lymphocytic Leukaemia who is taking part in a clinical trial known as ‘PCYC-1116-CA’ in the Haematology Department. She has kindly written a letter to us about how she joined the clinical trial, about what taking part means, and about her plans for the future:

“I really look forward to my appointments with ‘Renata’s team’. Their positive attitude is infectious and always encouraging. My own experience has been amazing, and I am very aware that behind all their work are years of study and training. Each member of the team has been caring to the last detail - nothing is avoided. It is impossible to convey the gratitude I feel, particularly in view of the extraordinary luck which came my way, enabling me to join the trial.”

“Playing tennis as a representative of Great Britain in Croatia, one evening I tried to fix a necklace. Looking in the mirror I saw bumps on my shoulder, then one day a journal arrived from Southampton University for my daughter - a student there over 25 years ago. The cover showed a scientist at work with a caption about new research. I politely waved this in front of my consultant and was transferred to Bournemouth to join a clinical trial. What a stroke of luck.”

“The results seem amazing - touch wood and all that. All I do is swallow three capsules. The rest is in the hands of the experts. Thank heaven for each of them, and the scientists behind the scene.”

“My goal was to join an expedition to the jungle in Costa Rica, and thanks to all this wonderful research in the trial I’m off in July in a tent for three weeks. Yes! My contribution is to keep fit (four or five games of tennis each week for one and a half hours each). At 82 it can’t be bad.”

“Thank you - it’s incredible.”

Tim is a Bowel Cancer patient who recently started on a clinical trial called Xilonix. We write about this trial in ‘Our Research’. Here Tim describes what it is like to be on a clinical trial:

“I have been receiving Chemotherapy Treatment for Bowel Cancer for some time and have recently been offered the opportunity to take part in clinical trials for a new drug. From the very beginning of the treatment my consultant and specialist research nurses fully explained the process and ensured I fitted all the criteria required. I have been allocated a personal research nurse who has escorted and supported me throughout, ensuring I fully understand exactly what is happening. She is also extremely supportive and accessible, not only to me but also my wife and family. The project is progressing very well, and I would certainly encourage anyone who is offered the opportunity to take part in any future trials at RBCH to have full confidence. I feel that these trials are absolutely essential for our ultimate aim to finally find a cure and together we will beat cancer.”

Eileen, a retired lady who has had a career in education, entered a hepatology (liver) trial last February. Here she speaks about what it is like to be a participant on a clinical trial, and gives some thoughtful advice for patients thinking of joining a trial.

How did you hear about taking part in research?

Eileen: I received a letter from the Bournemouth Hospital Research Department asking if I would like to participate in a trial... I should explain that I have been attending Bournemouth Hospital for Hepatitis C (infection) and expressed an interest in taking part in trials but had been told that on one or two (trials) I was too old to do it because the cut off mark was 65 years and I'm above that age. Together with this letter (about a trial for which Eileen was age eligible) came a description of the study, together with (a description of) the possible consequences, the risks and the benefits. These I looked through. I then looked for more information on the Web to find out more about this trial and more about the new Hepatitis C drugs that had been developed, sat down to think and, after consulting several members of my family and my friends, I made a decision to take part.

What made you decide to take part?

Eileen: First of all I thought there was a strong possibility that I would benefit from this trial in that my viral load could be decreased and I would also not have so many of the side effects, the debilitating side effects, especially that I had been feeling over the past forty years. Secondly that even if this did not benefit me, the research that's being done could be used to benefit other people.

Did you feel you had sufficient information about the study to decide to take part?

Eileen: Yes, I felt that I had sufficient information and I felt if I had any questions to ask I could get in contact with a doctor and the research nurse who were available. The documentation that was presented with the information was, I felt, perfectly adequate for me to take a decision.

What is it like to take part?

Eileen: Well I find it extremely interesting, mainly because I absolutely love research. But it is not easy. It requires a discipline. It requires taking a medication at a specific time each day, taking it as prescribed. It requires making notes of the positive and negative side effects. It is sometimes a rather rough ride especially when one has flu-like symptoms and ends up sweating at the end of a rather disturbed night. But I felt very confident that I was being well looked after during the period of this study, that my study nurse was on call 24 hours a day, seven days a week should I have any problems at all. And I found that any of my concerns were answered very rapidly and to my satisfaction.

What makes it a good experience for you?

Eileen: That I am able to contribute to the advancement of medical research - it is probably the most worthwhile benefit that I see to myself. I enjoy doing it. I enjoy also speaking to other people about the research. I find it a very, very good experience to have my friends and family behind me giving their support, urging me on. A particular example is that of my youngest grand-daughter who, when I told her I wanted to do that sort of research, she suddenly turned into 'my grandmother' and said, 'Well Nanny, I really don't think you should do it, but if you think that you should do it and say that you would like to do it, I will support you.' And she contacted me every other day on WhatsApp to make sure I am still doing well.

Do you manage to fit your clinic visits around your normal routine?

Eileen: The quick answer to that is yes. I am no longer employed but I do research work and on occasions when I have a research project in hand I find I can fit my clinic visits very easily into this routine.

What would you say to other patients who might be considering taking part in a trial?

Eileen: First of all, find out as much information as you possibly can about your condition and about the study that you have been invited to participate in. Discuss the possibility of your participation with as many people as you possibly can, for example with your close family, with your friends, with other people who are suffering from this condition but also those who may have participated in a trial and in treatment in the past. Do not make a quick decision but consider it very carefully and make certain you know how long it is going to take and how much of a commitment it is going to require of you. For example the particular trial that I am on is 12 weeks treatment followed by 24 weeks of regular review to make sure that the treatment benefits have in fact been sustained.

Is there anything else you would like to say?

Eileen: There is a great deal I would like to say. I think these trials are extremely important, both to inform the developers of any treatment that may be available, to inform clinical staff at all levels of the healthcare system, and also to inform the general public about what can be done. But I do however think that there is a great deal of ignorance - first of all about health conditions, specifically about conditions such as Hepatitis C where there is a certain amount of stigma attached to it. There is a tremendous amount of ignorance attached to it, and people need to be educated not merely on the condition itself but on the implications for the future of populations. For example, the economic consequences of Hepatitis C are only just now being recognised, because productivity is lost, a lot of money is wasted and that is in addition to the direct human cost.

We would like to thank Eileen for agreeing to be interviewed, and also extend our gratitude to Emma Gunter, her Research nurse, for helping to arrange the interview.

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