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 >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> Rosamund got a letter about the ovarian screening trial. She wanted more information and asked to see the whole trial protocol. She was annoyed they o

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 >> Not taking part in a trial >> Lesley - Interview 44 >> She felt this was a decision she had to make for herself. The research assistant accepted her decision and did not try to change her mind.

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 >> Cancer - Non-randomised studies >> Anthea - Interview 39 >> Anthea completed a 12-month trial of interferon. When the melanoma returned, she joined a trial of Taxol (paclitaxel), but was advised to stop early b

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 >> Lesley - Interview 44 >> It was hard being asked about a trial when she was feeling shocked and worried. But she understands that timing is important when treatment decisions

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> When she told the consultant her decision, he seemed angry, which made her feel vulnerable and upset. She worried that if she had dropped out after ra

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 >> 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.

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 >> Amanda - Interview 22 >> Amanda describes a double-blind trial of pro-biotic yoghurt to control irritable bowel syndrome. She felt the research nurse wanted a particular resul

Amanda has taken part in a trial of pro-biotic yoghurt for irritable bowel syndrome, and withdrew from a trial about early interventions to prevent diabetes. She is setting up a website for the public to design their own trials.

Medical research >> Clinical Trials >> Long term conditions >> Sergio - Interview 37 >> Sergio has always supported the idea of medical research, so when he was first diagnosed with diabetes, he asked his GP if there was any research he c

Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.

Medical research >> Clinical Trials >> Organising trials >> Sir Richard Doll - Interview 31 >> Sir Richard Doll, a pioneer of clinical trials, explains an early attempt to run a randomised trial with wounded soldiers during WWII, and the lack of

Sir Richard Doll was one of the doctors who first demonstrated the link between lung cancer and smoking. He was Warden of Green College, Oxford. He was interviewed shortly before his death, in 2005.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> She has been trying to set up a trial on the internet to test if selenium supplements prevent cancer.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> It’s important to remember you can pull out at any stage and it won’t affect your care. She worried that it might affect her own care but in fact it d

Medical research >> Clinical Trials >> Long term conditions >> Sarah - Interview 38 >> Doing your best to help others is important – if being in a trial also helps you as an individual, so much the better.

Sarah volunteered for a placebo-controlled trial of a drug intended to help women at risk of osteoporosis. It involved daily injections and eventually she dropped out of the trial. (You can see Sarah talking more about her experiences on the healthtalkonline site osteoporosis, Interview 27).

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sabiha - Interview 19 >> It never occurred to her to drop out of the breast screening trial. She likes to see things through and wouldn’t want to do anything to damage the tri

Sabiha took part in a trial of breast screening for younger women (under 50). More recently she volunteered for a trial of cholesterol-lowering drugs but was not eligible because her cholesterol level was too low.

Medical research >> Clinical Trials >> Mental health trials >> Fenella - Interview 20 >> Fenella describes a trial testing the effectiveness of a computerised behavioural therapy programme for managing anxiety disorders, compared to conven

Fenella took part in a randomised trial of partial hospitalisation compared to standard community treatment for borderline personality disorder. Results showed the group she was in (partial hospitalisation) had better outcomes.

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.

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 >> Long term conditions >> Harry - Interview 07 >> Trials are designed to find out things that don’t work. Doctors are there to help, and if you have any problems you should tell them straight away and

Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> Kate advises people to think carefully about the commitment involved before they agree. If you are going to pull out, do it as early as possible for t

Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Jenny - Interview 40 >> Jenny was pleased to be invited by her GP to take part in a trial of different treatments for very heavy periods.

Jenny is in a trial of different ways of treating heavy periods at her GP surgery. The trial compares standard treatment with a new kind of coil or intrauterine device which releases a hormone in the womb.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> It’s important to tell people about trials, but she wonders if clinicians always appreciate the commitment they’re asking people to make, the side eff

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> At the end of the trial participants were invited to a big meeting where the results were presented and explained. It felt very satisfying to be part

Medical research >> Clinical Trials >> Long term conditions >> Angela - Interview 23 >> Angela had some distressing side effects. She told staff but kept going because she had made a commitment and wanted to honour it. She knew it was onl

Angela was diagnosed with Parkinson’s disease after taking part in a trial on nerve conduction. She has since been in a randomised trial of different drugs for Parkinson’s and would happily take part in another trial, despite having had side effects.(Angela is also on our Parkinson’s disease site, Interview 10).

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil suggests it might be a good idea to have more formal liaison between GPs and trial staff so the GPs can learn from it and improve care.

Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Merilyn was quite pleased when she found out which type of by-pass surgery she had been allocated to, but she didn’t really mind either way.

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 >> Mental health trials >> Fenella - Interview 20 >> Fenella was given a copy of the journal article reporting the trial results. It was rewarding to feel her contribution had helped other people.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> It was always made clear she could withdraw at any time. She thought about it because of the side effects, but felt it would have been a waste of time

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 >> Screening, prevention other medical interventions >> Sabiha - Interview 19 >> Feedback of results shows respect for people’s contribution. If they don’t feel involved they may be less likely to volunteer again in future.

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 >> Long term conditions >> Harry - Interview 07 >> After the dose of the drug was increased, Harry had bad side effects. He almost gave up, but the senior clinician explained what had happened and enco

Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> Amanda has worked on reviews of evidence about medical treatments, and is still shocked sometimes to find out how little evidence we have for some thi

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> It is important that trial results are explained to participants, whether they are positive or negative. People will find out one way or another, and

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna describes the ovarian cancer screening trial, comparing no screening, a blood test and a vaginal ultrasound scan.

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 >> Long term conditions >> David - Interview 34 >> After he’d started the trial, there were scare stories about the type of treatment being tested. He felt it was too late to stop, but might have thoug

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 >> Amanda - Interview 22 >> In a randomised trial we do not know which treatment is best, so we don’t know if it’s better to be in one group or another. Randomisation is the best

Medical research >> Clinical Trials >> Trials involving surgery >> Alex - Interview 45 >> He doesn’t remember being told if he would receive the results. He asked to see a copy, but not everyone would want to.

Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny stopped taking the trial tablets when she developed side effects, as she thought might happen. She felt staff reacted as if ‘I was no good to th

Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.

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 >> Trials involving surgery >> Merilyn - Interview 41 >> Merilyn would like to know how the trial is going, but she hasn’t asked. She doesn’t think she was promised a copy of the final results.

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 >> Organising trials >> Sir Iain Chalmers - Interview 30 >> Iain explains why he thinks randomised trials are the only ethical way to make progress when we don’t know which treatment is best, for example in pro

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

Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> Occasionally Kate and her husband found keeping appointments ‘a bit of a chore’, especially when he realised he must be in the placebo group, but they

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

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> People who organise research have an ethical responsibility to give feedback to participants, but final results may not be available for a long time.

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 >> Not taking part in a trial >> Hazel - Interview 05 >> Hazel feels passionately that the public needs better information about trials. The need to compare things to decide which is best is something people

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 >> 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 >> Long term conditions >> Sarah - Interview 38 >> Sarah found it quite inconvenient continuing the injections even when she was on honeymoon – perhaps if she had been braver she might have said no ear

Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> The research nurse shared preliminary results with them and told them about presentations he was giving, to keep them informed and engaged.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> Wendy felt well-informed and the decision was left entirely up to her. She had two weeks to go away and think about it - more than that might have bee

Medical research >> Clinical Trials >> Mental health trials >> Fenella - Interview 20 >> Not all patients will be able to read an academic journal article, so other ways of presenting results must be found. During the trial, postcards coul

Medical research >> Clinical Trials >> Long term conditions >> Sarah - Interview 38 >> She withdrew from the trial when a family member was taken into hospital. The smell of the injections started to upset her because it reminded her too

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Leslie - Interview 43 >> Leslie was taken off the trial by hospital staff when he became so ill he was rushed into hospital by ambulance.

Leslie took part in a placebo-controlled drug trial of rofecoxib (Vioxx) for prostate cancer prevention. He became extremely ill, but doctors monitoring his progress did not pick up his symptoms. He took the drug company to court, and won compensation.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> It should be easier for people to get the results of trials, and researchers should make sure they build in the costs of providing good feedback.

Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> The trial was explained clearly but Hazel felt in limbo when she was sent away to think about it. She just wanted someone to tell her what treatment t

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Celia wishes she had withdrawn from the trial. She has since found that her system seems to be unusually sensitive to radiotherapy, and she believes t

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 >> Screening, prevention other medical interventions >> Tony - Interview 36 >> Tony explains why he took part in an early placebo-controlled trial of Viagra (sildenafil) for erectile dysfunction, and why testing against a placebo

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 >> 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 >> Trials involving surgery >> Merilyn - Interview 41 >> Merilyn gets on really well with the research nurse and feels comfortable talking to her. That helped when she had to decide quickly whether to take p

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 >> Ronny - Interview 42 >> Ronny was prepared to let the computer decide which treatment he would have for prostate cancer, but if he had been allocated to radiotherapy he would

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 >> Long term conditions >> Kate - Interview 13 >> Kate’s husband was annoyed when he guessed he was in the placebo group. He continued for the sake of the study, but it was a relief when it ended. He

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Rose - Interview 17 >> It is important for staff not to try to influence you. If you say yes just because you like the researcher it could cause problems.

Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.

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 >> Long term conditions >> Sergio - Interview 37 >> Sergio was told at the end of the trial he had been taking the active drug, but his diabetes symptoms had not changed. He always understood the trial

Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> Amanda was surprised to find she was eligible for a diabetes prevention trial. She withdrew because she was annoyed that staff told her GP she was at

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).

Medical research >> Clinical Trials >> Not taking part in a trial >> Charles - Interview 29 >> He volunteered for another trial, testing a nasal inhaler for erectile dysfunction. He checked at the first appointment that he was in the eligible ag

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 >> Not taking part in a trial >> Elizabeth - Interview 27 >> If someone had mentioned the trial earlier on it would have been less of a shock when she was feeling so vulnerable. The idea needs to be introduced s

Medical research >> Clinical Trials >> Not taking part in a trial >> Charles - Interview 29 >> He did not mind the idea of a placebo, and would have been curious to see if he was susceptible to the placebo effect. He might have dropped out if he

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Sue - Interview 01 >> Sue would not have minded if she had been allocated to the control group. Control groups are essential to measure the effects of the new intervention.

Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> He’d have been interested to see what happened if he had been in the placebo group. Before the trial he might have felt disappointed to get a placebo

Medical research >> Clinical Trials >> Not taking part in a trial >> Polly - Interview 09 >> Polly wonders if we could run trials where people could choose a treatment rather than being randomised without biasing the results.

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 >> Not taking part in a trial >> Charles - Interview 29 >> After a lengthy second appointment, an administrator spotted that he had just turned 66, so he was told he was ineligible. He felt it was badly handle

Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> In the trial Lester chaired it was hard to approach patients with CJD (Creutzfeldt-Jakob Disease) in the short time between diagnosis and death.

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 >> Mental health trials >> Anton - Interview 28 >> Anton has taken part in many trials comparing different treatments, but would never agree to be in a placebo-controlled trial.

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> Jayne explains the need for randomisation to have comparable groups of people in each arm of the trial.

Medical research >> Clinical Trials >> Mental health trials >> Anton - Interview 28 >> Anton does not take no for an answer and will go to great lengths to persuade staff to include him in a trial, even if he does not meet the eligibilit

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

Medical research >> Clinical Trials >> Not taking part in a trial >> Marie - Interview 25 >> Marie did not realise at first the doctor talking to her about the trial worked for a drug company and that the drug company was running the trial, no

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 >> Long term conditions >> Danny - Interview 26 >> When it was discovered her summer holiday clashed with the next trial appointment, Danny was told she might be excluded. The word ‘excluded’ made her

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 >> Not taking part in a trial >> Gill - Interview 10 >> Researchers need to think carefully about how they recruit patients, and consult at an early stage with staff who will be talking to people about the

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 >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> She wonders if the nurse didn’t want her doing anything extra that might affect the diabetes trial results. But it shouldn’t matter in a randomised tr

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna thought the questionnaire about feelings was badly designed. She tried to point out that her feelings were related to her husband’s illness, no

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> Rosamund would not have agreed to take part in a study which did not use randomisation to make the groups comparable – it is the only way to get a rel

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 >> 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

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> When Jayne learnt she had breast cancer in 1994, she knew it was unclear which treatment was best and asked to join a trial. The consultant was dismis

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> The extra side effects meant she had to give up work and lost money as a result. There was a lot of disruption to family life, but they found a new ro

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Judith - Interview 24 >> A relative with multiple sclerosis was upset to find he’d been in the placebo group in a trial. She would not like to be in a placebo-controlled trial

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 >> 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

Medical research >> Clinical Trials >> Mental health trials >> Anton - Interview 28 >> Anton says nothing has helped his depression, and he is desperate to try anything. He hopes by taking part in trials he will one day find an effective

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil explains how the cholesterol-lowering drug and placebo were blinded, but he guessed he might be taking the active drug because his cholesterol le

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Jenny - Interview 40 >> Jenny can’t imagine any condition where she’d be willing to think about a placebo-controlled trial. She recognises the possibility of benefiting from

Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> When Danny’s blood pressure was monitored during the trial, one doctor would never tell her the measurements. She felt she had a right to know and was

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

Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> Kate and her husband guessed correctly that she was getting the active injection and he was getting the placebo, because they reacted differently.

Medical research >> Clinical Trials >> Long term conditions >> Sergio - Interview 37 >> Sergio was not worried about whether he got the placebo or the active drug. Since the case at Northwick Park, he has been more wary of the possible ri

Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.

Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> David had to attend several appointments for tests and a series of injections. In between he had to take his own peak flow (breathing) readings and re

Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> Kate and her husband hoped a trial of grass pollen immunotherapy would improve their hay fever, and also help others in future. Free medication was an

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> Jayne explains that blinding to patients and staff is not always possible, but you can still make sure the person analysing the results is blinded to

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> He can see that often a placebo might be safer than the trial drug. But in his case, he feels the evidence is already so strong he would not be happy

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 >> Screening, prevention other medical interventions >> Jenny - Interview 40 >> Filling in the questionnaire about her symptoms prompted Jenny to realise that the treatment wasn’t working, so she went back to her GP.

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

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Celia was relieved when the trial finished and she did not have to make the daily journey. She has no regrets, though she still worries that the extra

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.

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 >> Mental health trials >> Fenella - Interview 20 >> Fenella explains the trial treatment for borderline personality disorder and why questionnaires were important to check the effect on her mental state

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 >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> It might have been useful for her GP and the Macmillan nurses to know more about possible side effects, but trial staff told her to come back to them

Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> David had expected to feel like a guinea pig, but actually felt it had been interesting and worthwhile. He was pleased to have a personal debrief with

Medical research >> Clinical Trials >> Long term conditions >> Angela - Interview 23 >> Angela was asked questions about mobility and activities of daily living, but also about her emotions and relationships.

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

Medical research >> Clinical Trials >> Long term conditions >> Harry - Interview 07 >> Harry got a letter from the trial clinic saying his name had been put forward by his doctor. It seemed like a good opportunity to have some health che

Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> Caroline felt the researchers were only interested in certain questions which weren’t really about her experience. The questionnaire was long and repe

Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny’s husband learnt he had diabetes when he was being monitored during a previous trial. They both volunteered for another trial because it helps t

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> The questions in the ovarian screening questionnaire didn’t seem to be about things women themselves would think important. Input from consumers would

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 >> Trials involving surgery >> Alex - Interview 45 >> Alex wonders if he got faster access to diagnostic tests because he’d agreed to be in the trial, but he thinks the quality of care overall was no diff

Medical research >> Clinical Trials >> Trials involving surgery >> Merilyn - Interview 41 >> Follow-up after the trial doesn’t include questions about the surgical scar and post-operative pain, or about wider lifestyle issues, which Merilyn fi

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 >> Mental health trials >> Fenella - Interview 20 >> Looking back, Fenella feels one benefit of being in the trial was having access to staff who were expert and motivated to find the very best treatment

Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny put her tablets into a dosage box from a previous trial. Staff were very concerned that unused tablets were out of the original packets. If this

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> She thought being in the trial would mean she would be really well looked after by experts. But after agreeing to take part she never saw the professo

Medical research >> Clinical Trials >> Mental health trials >> Anton - Interview 28 >> The end of a trial feels to him like a ‘non-event’ – he has little rapport with the researchers and so does not miss the contact.

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

Medical research >> Clinical Trials >> Trials involving surgery >> Ronny - Interview 42 >> Ronny agreed to be screened for a prostate cancer trial because he thought it might help his brother who had the condition. He never imagined he too w

Medical research >> Clinical Trials >> Long term conditions >> Elvan - Interview 15 >> Elvan missed the trial when it ended. He liked the research team and was disappointed they hadn’t been able to improve his symptoms yet.

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

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he was in expert hands.

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

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> When the trial finished, she felt vulnerable and worried whether the cancer would return. Having six months extra treatment in the trial felt like ‘an

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

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> It was reassuring to discover she could ask to come back for further ovarian cancer screening after the trial ended.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Rose - Interview 17 >> Rose volunteered to ‘give something back’. She knew both treatments were tried and tested, and was happy to be in the control group. But she would hav

Medical research >> Clinical Trials >> Long term conditions >> Angela - Interview 23 >> Angela would take part in a trial another time, including a placebo-controlled trial, because she feels it’s important for medical science.

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 >> Long term conditions >> Phil - Interview 11 >> Phil was happy with his first experience of a trial, and has recently volunteered for a similar trial. He values the expert supervision.

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 >> 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

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

Medical research >> Clinical Trials >> Long term conditions >> Harry - Interview 07 >> Having already completed one trial, Harry didn’t want to join another one run by the same research group. He felt his blood pressure was now fine and

Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

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

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 >> Hazel - Interview 05 >> Staff put no pressure on her to take part, but once she declined they could advise her and reach a shared decision about treatment. In ‘researcher mod

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

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