Patient and public involvement in research

Maggie

Female
Age at interview: 71

Brief outline: Maggie has been a patient advocate in research for about 12 years. She got involved in health and medical research after she was diagnosed with breast cancer.

Background: Maggie is retired, but worked as a health visitor for most of her career. Her daughter died of Reyes Syndrome when she was two years old. Ethnic background: White English.

Audio & video

After she was diagnosed with breast cancer, Maggie joined a network of patient groups campaigning for better treatment for breast cancer patients, which later merged with another large national breast cancer charity. She attended a conference organised by the charity, where she was invited by a researcher to become a lay member on a steering group for a large breast cancer treatment trial. She found the research very interesting and saw how involving patients helped to overcome some of the barriers the trial faced. Because of this experience she joined a local research group and travelled to the USA to undertake a Project Lead Training course. This involved learning about science and research methodology and, whilst it didn’t make her a “scientist in a week”, it gave her a better understanding of research. She felt strongly that this type of training should take place in the UK, so, along with the other research group members, set up a group to offer training for patients throughout the UK. The aim of the group was to provide education, mentoring and support for people who had been treated for cancer and were interested in adding the patient perspective to research. 

As a patient advocate, Maggie offers a patient perspective to researchers who are setting up a new trial, and advises organisations that provide patient and public involvement. Working on trials involves reading and commenting on documents about the research, including what the research is aiming to do and how this is communicated to participants. She also attends meetings to discuss the research with researchers, clinicians and other patient advocates. She also encourages researchers to think about what difference their projects will make for patients and thinks there should be more research done on the effects of cancer treatment on things like patients’ quality of life and relationships. 

Maggie has found that researchers have been very positive about the difference involving patients makes to their research. She said the biggest indication of how valuable they see it is the large number of experienced and junior researchers who contact her organisation to ask for a patient perspective. She thinks one of the strengths of involving patients is that they can ask the “elephant in the room questions” because they aren’t there as employees, but as interested people. She said that patient advocates don’t need to be representative of all patients; they should draw on their own experience and training, and discuss things with other patients. She thinks that new patients should be encouraged to get involved in research and mentored to help them do so, but that it would be a shame to waste the expertise and skills of people who have been doing it for a long time. Maggie described her experience of being a patient advocate as seductive and exciting. She feels like she’s making a difference, which leads to research becoming more valuable and more beneficial to patients.

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