Margaret became a PPI representative about three years ago after she was diagnosed with cancer. At that stage PPI in cancer research hadn’t been established in Northern Ireland, and she was invited to get involved in implementing it.
Before she was diagnosed with cancer, Margaret worked in radiotherapy. After her diagnosis she was invited to become a PPI representative. In Northern Ireland, where she lives, PPI stands for Personal and Public Involvement. Margaret sits on several groups, including a trials committee and the Northern Ireland Cancer Research Forum, which she helped establish after advertising for members; people living with cancer, who were interested in research.
Having attended Macmillan’s Building Research Partnerships programme, Margaret became a facilitator training other people in understanding research. She thinks there is a lack of understanding about research among the general public, which she feels is important to address in order for people to make informed decisions about taking part in research when they become patients. Through the forum she has organised some training events for members, which cover things like understanding the jargon in research and how to review information sheets. She has also been on tours of research laboratories and attended ethics committee meetings to see what actually happens during the processes.
Margaret chairs the Cancer Research Forum, which is made up of over twenty members, both patients and carers, who all share the PPI workload. She enjoys her role as Chair and admires the others she works with. Although they work together because of the common link of cancer and have faced stressful and sad times when members have died, the forum is not seen as a support group.
To be involved in PPI, Margaret thinks people need to want to have a say in research and must have something that motivates their involvement. They should be willing to work and give their time, but only as much as they can. Margaret’s aim is to improve treatment, care and quality of life for future patients. She said she was very grateful to previous participants in clinical trials who were involved in testing the treatment she received for cancer, so is partly motivated to take part to repay them for their contribution.
Although she believes in the value of PPI, Margaret thinks its impact needs to be assessed so that it can improve. Because research relies on facts, she would like to see evidence about the effectiveness of PPI, but thinks it’s difficult to get an accurate measurement of its benefit. To be transparent about impact, she said it was important for records of PPI input to be kept, including in research publications in which researchers should acknowledge the input they’ve had from patients and members of the public.
Margaret loves being involved in PPI and said she gets more from it than she gives to it. She believes it enhances research, and encouraged researchers to be open-minded and think about representatives as more than tick boxes.