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• Medical research >> Clinical Trials >> Side effects and queries >> Side effects and queries

Side effects and queries

• Medical research >> Clinical Trials >> Under-researched topics/priorities for other research >> Under-researched topics/priorities for other research

Under-researched topics/priorities for other research

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• 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 >> Not taking part in a trial >> Hazel - Interview 05 >> It is vital that trials are well designed and build on existing knowledge, and that they focus on things which really matter to patients.

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 >> Organising trials >> Sir Richard Doll - Interview 31 >> Sir Richard Doll explains why it can be useful for trials to compare several things at once and why it is important to have enough participants to get

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 >> Cancer drugs and radiotherapy - randomised trials >> Judith - Interview 24 >> At first she didn’t know what questions to ask and sat there ‘like a nodding dog’. Now she feels more confident to ask questions about the aims of the

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 >> Merilyn - Interview 41 >> Since the bypass surgery she has had pain for several years. She wonders whether it was because of the new way the operation was done as part of the t

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 >> Merilyn - Interview 41 >> She has found it hard to deal with how the scar looks. She’d have liked to talk to other women patients about how they felt. The hospital could not of

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 >> Long term conditions >> Kate - Interview 13 >> There was a small risk from the injections of anaphylactic shock, but there were safety precautions in place. They kept a diary to report other reacti

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 >> Joanna - Interview 04 >> Joanna argues for more public debate about the trade-offs between side effects and gains in survival. Patients, government, doctors and scientists hav

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 >> Organising trials >> Lester - Interview 06 >> It takes a long time for most trial results to be published. Sometimes when results seem disappointing, researchers may want to carry on, hoping a tre

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 >> 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

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 >> Organising trials >> Lester - Interview 06 >> Lester describes the process of designing and approving a trial, from steering group and systematic review to 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 >> Organising trials >> Lester - Interview 06 >> Lay people can help make trial information leaflets more responsive to patients. There are differences in power and information between doctors and pa

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 >> 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

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 >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna found the internal scans quite uncomfortable, and the way she was called back for further tests made her anxious. But she didn’t feel the resea

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 >> Cancer - Non-randomised studies >> Pam - Interview 21 >> Pam finds her regular scans reassuring. Talking to fellow patients helps keep her spirits up, and the nurses are very encouraging. Hospital feels like

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 >> 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

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 >> 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.

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 >> 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

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

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 >> 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

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 >> 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 >> 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 >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> Caroline might take part another time, but not in the case of serious illness. She advises others to think carefully before saying yes, ask questions,

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 >> Caroline - Interview 08 >> After the birth, Caroline took part in an audit of the information she’d been given. She was made to feel she’d failed a test. It raised wider questio

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 >> Caroline - Interview 08 >> Caroline sees it as the job of ethics committees to protect patient interests. Ideally you want patient involvement, but it’s a complicated field, eve

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 >> Rosamund - Interview 18 >> Involving people in research can seem tokenistic, but it’s still useful to have comments on leaflets and questionnaires to make them more understandab

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 >> It’s much easier nowadays for people to get involved in research, but we need to investigate what difference it makes. People can contribute at differ

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 >> Hazel - Interview 05 >> Hazel prefers the word ‘people’ to ‘consumers’, and wants partnership with doctors. Individuals can never be ‘representative’ but their views are stil

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 >> Amanda - Interview 22 >> Amanda runs a website (ThinkWell) where members of the public can find out about the meaning of risk statistics, suggest their own priorities for rese

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 >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> More research is needed to understand the impact of involving consumer representatives in designing trials and setting priorities.

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.