Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

Medical research >> Clinical Trials >> Trials involving surgery >> Alex - Interview 45 >> Alex understood doctors were unsure whether to recommend surgery for heel fracture or not. He had a slight preference for surgery but random allocatio

Alex fractured his heel in 2007. He agreed to take part in a trial comparing surgery with letting the bones heal naturally. He was randomised to the group having surgery, and his heel is slowly recovering.

Medical research >> Clinical Trials >> Organising trials >> Sir Iain Chalmers - Interview 30 >> Iain explains the worry that screening tests may raise anxiety, especially if it is unclear what to do once a problem is found, as in prostate cancer

Iain is a keen advocate for well-designed randomised controlled trials to test treatments.

Medical research >> Clinical Trials >> Organising trials >> Sir Iain Chalmers - Interview 30 >> Treatment for prostate cancer can have unpleasant side effects. Because the best way of treating it is uncertain, a trial comparing different treatmen

Iain is a keen advocate for well-designed randomised controlled trials to test treatments.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sue - Interview 01 >> It was explained clearly to Sue that there was a trial comparing the effect of different types of information for women who’d had a previous caesarean

Sue’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial looking at different types of information and decision aids about birth choices for women who had already had one caesarean. She was pleased to be involved.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sue - Interview 01 >> Sue was asked about the trial when the midwife could not hear her baby’s heart and she came for an emergency scan. But she did not feel too stressed o

Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> Giving informed consent when she knew nothing about clinical trials, the condition itself, or the treatment options was ‘a pretty tall order’.

Hazel learnt she had breast cancer (DCIS) after screening in 1991. After surgery she was asked to be in a trial comparing no further treatment with radiotherapy, tamoxifen, or radiotherapy and tamoxifen combined. She declined to take part. (You can see Hazel talking more about her experiences on the Healthtalkonline site on Breast cancer screening, Interview 17 & DCIS, Interview 26).

Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> When people are sick they may not want choice. They may want their doctor to be honest about uncertainties, but also to advise them what’s best.

Polly was invited to be in a trial comparing tamoxifen against a placebo for breast cancer in the 1990s. She decided not to take part, because she felt there was already good evidence to support the use of tamoxifen.

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Pam - Interview 21 >> Pam has breast cancer which spread to her bones and liver. Taking a trial drug seemed‘a lifeline’ she could not refuse, despite serious side effects.

Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)

Medical research >> Clinical Trials >> Not taking part in a trial >> Charles - Interview 29 >> Charles volunteered for two trials on prostate cancer screening and a new treatment for erectile dysfunction. He mainly hoped it would benefit him, an

Charles volunteered for two trials, but ended up unable to take part in either of them. The first time he did not meet the eligibility criteria. The second time was because of an administrative mix-up about his age, and he feels it was not well handled.

Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> David joined a trial of treatments for asthma because he wanted to learn more about the condition, as well as to help medical research. The expenses p

David volunteered for a placebo-controlled trial of a new treatment derived from mouse DNA to improve asthma symptoms. He later discovered he was in the group taking a lower dose of the treatment, but he would not have minded being in the placebo group.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sue - Interview 01 >> Sue took part in a trial of decision aids because she wanted more information to help her understand what happened in her first labour and why she nee

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil joined a trial of medication for high blood pressure mainly to see staff who specialised in his condition and had more time than his GP. Helping

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.

Medical research >> Clinical Trials >> Long term conditions >> Elvan - Interview 15 >> Elvan joined a trial mainly because he hoped it would benefit him but it made little difference to his health. Now looking back he is still glad it ma

Elvan took part in a trial of medication for hypertension. His blood pressure did not improve much, but he felt well cared for and is glad to have taken part. He has since joined another trial in the same unit.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> As someone who has worked in healthcare, Caroline took part as a favour to the staff, because she knows how hard it can be to recruit volunteers for r

Caroline’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Tony - Interview 36 >> Tony says medical advances cannot be made unless people volunteer. He has benefited from drugs trialled by others in the past, and if he can do the sa

Tony took part in a double-blind, placebo-controlled trial of Viagra (sildenafil) for erectile dysfunction following a prostate operation. He was in the placebo arm but was given Viagra after the trial ended. (Husband of Pam, Interview 21).

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> Rosamund supports medical research, but it depends how invasive the different interventions are. She felt having ovarian screening could be uncomforta

Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Judith - Interview 24 >> Consenting to the trial was not a huge decision. Both groups had chemotherapy, one every two weeks and one every three weeks. She would have preferred

Judith agreed to take part in a randomised trial comparing different intervals of chemotherapy treatment for non-Hodgkin’s lymphoma. She was allocated to the standard treatment and responded well.

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Shirley - Interview 16 >> The surgical study Shirley was invited to join was to check that local surgeons could perform a particular procedure accurately. She had to have surge

Shirley was invited to join a surgical trial of sentinel node biopsy after she had been diagnosed with breast cancer (DCIS, ductal carcinoma in situ). (You can read more of Shirley’s experience on the healthtalkonline DCIS site, Interview 22).

Medical research >> Clinical Trials >> Trials involving surgery >> Alex - Interview 45 >> It did not worry him that he might be allocated to have surgery – compared with other people around him on the ward his problems seemed minor and he w

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna’s husband was in a trial because he would do anything to help his leukaemia. She took part in a screening trial for altruistic reasons. People

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

Medical research >> Clinical Trials >> Not taking part in a trial >> Lesley - Interview 44 >> When Lesley fractured her heel, she wanted to be told by a doctor what to do. She felt being in the trial would make her responsible for choosing, eve

Lesley slipped and fractured her heel. She was invited to take part in a trial comparing surgery with letting the bones heal naturally. She decided not to take part because she wanted the consultant to make a decision about treatment.

Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> Hazel felt she did not know enough about the condition or the facts of her own case to make an informed choice about the trial, especially as the four

Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> Polly decided not to take part in a placebo-controlled trial of tamoxifen because she felt there was already enough evidence it worked for breast canc

Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> She later discovered some doctors disagreed with radiotherapy as a treatment for DCIS, and were entering their patients only for the tamoxifen or no t

Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> Polly never felt she got a straight answer about why the trial was needed and whether the doctor would have offered her tamoxifen outside the trial. A

Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> When his son was dying, Lester wouldn’t have wanted anything to be intrusive. He knows trials are essential, but at the time it was about helping his

Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.

Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> Even with experience of helping run a trial, he is unsure if he would volunteer if he was terminally ill. Maybe people should carry something like a d

Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> It was an anxious time waiting to hear which trial group she was in. She’d have felt cheated if she had been in the control group, but would have stay

Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.

Medical research >> Clinical Trials >> Trials involving surgery >> Ronny - Interview 42 >> Waiting to hear which group he was in was ‘a long few minutes’. Ronny hoped he’d be in the active monitoring group, but it turned out to be surgery. H

Ronny was invited by his GP to be screened for prostate cancer as part of a trial. He discovered he had cancer. He was randomised to have radical surgery (rather than monitoring or radiotherapy) and is pleased with how it went.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> The trial involved a home visit from a researcher and a follow-up questionnaire.

Medical research >> Clinical Trials >> Long term conditions >> Elvan - Interview 15 >> Elvan feels you need to trust your doctors as the experts. It didn’t matter to him which group he was in.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sue - Interview 01 >> After the trial Sue was sent a copy of the report and an easy-to-read summary. She was pleased that the decision aid had been shown to help.

Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> Hazel would probably take part in a trial another time, but you can never be sure until you have a real decision to make. It would depend on the trial

Medical research >> Clinical Trials >> Not taking part in a trial >> Marie - Interview 25 >> Marie’s GP spent time discussing her concerns about the trial and her consultant contacted the trial on her behalf to say she was not happy to take pa

Marie was diagnosed with chronic lymphocytic leukaemia in 1992. She was recently invited to take part in a clinical trial of a new monoclonal antibody. At first she thought she would take part but after reading all the details decided against it.

Medical research >> Clinical Trials >> Not taking part in a trial >> Gill - Interview 10 >> Gill would want to know a lot about the interventions being tested. She’d take part if there was genuine uncertainty about which treatment was best an

Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> Wendy was asked to take part in a year-long trial of chemotherapy for bowel cancer. She thought it might be ‘too selfish’ to take part if it affected

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Shirley - Interview 16 >> The sentinel node biopsy involved little apart from being injected with a dye which showed through her skin for some time after. She is not sure she w

Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> She would probably have taken part if tamoxifen had been available only through a clinical trial. She is not against placebo-controlled trials in prin

Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> Lester advises people to get lots of information. Now he knows more about trials he’d be more likely to take part if his doctor offered one, especiall

Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> She might be interested in taking part another time, but she has become a bit cynical about trials. She’d want to ask a lot of questions, and make up

Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Celia’s message to others asked to take part in a trial is to look at it seriously and see if you are able to help.

Celia took part in a randomised controlled trial comparing different periods of radiotherapy for lymphoma. She was would have preferred the shorter course; she was allocated to the longer course but took part anyway.

Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Being in a trial is a personal decision, but Merilyn encourages people to consider it. Medicine can only make progress if people volunteer.

Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> It’s difficult to advise others, but Julian recommends taking part in a trial, both because it helps others and because you get close monitoring and a

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil encourages others to think about taking part in a trial unless they have real fears. You’ll be safe and well looked after, and can always pull ou

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Anthea - Interview 39 >> Anthea suggests that if people have real doubts or worries, they should not agree to take part.

Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.

Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> Think carefully before taking part in a trial, and try not to be too influenced by family. They want the best for you, but they don’t know what you re

Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> Professionals need to be very honest with patients, and be sure they really feel the trial is ethical before asking people to take part.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> Elizabeth asks clinicians to treat each person as an individual, respect their choices and give them time to think.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> Elizabeth declined to take part in a trial in early stage ovarian cancer. She felt she did not need extra treatment and was worried about side effects

Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> It comes down to whether you can trust your doctor if they tell you they do not know which treatment is best. Knowing that a trial has ethics approval

Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> Jayne did not mind being in the control group, even though the new treatment tested in the trial has now become the standard treatment, so she was not

Jayne had breast cancer aged 33. She wanted to join a clinical trial but her consultant was not interested, so she transferred to another hospital and took part in a trial comparing tamoxifen with tamoxifen plus goserelin (Zoladex).

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