Anne – Cohort studies
Anne is part of a birth cohort study. She did not become aware of her involvement until she was a young adult and moved into her own home. Anne is passionate about medical research and takes part in many studies.
Anne is part of a birth cohort study. She does not remember joining the study or being part of it until she was a young adult. She first became aware of being in the cohort when she had her own address and the research team were able to contact her. She continues to allow the research team to use her medical data and often fills out survey questionnaires as she believes that “it’s a fantastic thing to be part of a study like that”. Her enthusiasm for taking part is also related to her scientific background in physiotherapy and her husband’s biological research career. She recognises that, although she is only one person, her contributions can support a bigger picture. She is proud of her participation and sees it as her public duty to help other people.
A few years ago, Anne attended a reunion where she met others who were involved in the birth cohort study. She also met people who had attended her school which she described as “really lovely”. At this reunion, photographers took pictures of the participants in their primary and secondary school groups which gave Anne a sense of belonging. She was also curious to see how her peers; lives had been.
The researchers at the reunion gave a talk about the birth cohort study and how the information had been used nationally and internationally. This gave Anne a sense of the size and importance of the study, and made her feel her contributions were worthwhile. At the reunion, there were stands advertising different activities. Anne signed up for one on mental health but has yet to be contacted. It is important to her to “join in” the cohort study and, as such, she has joined their Facebook page. Instead of a Christmas card, she said it has been good to receive a newsletter from the research team which has helped her to feel more up to date.
Anne is not concerned about data safety as she trusts researchers and the scientific process. She understands that her data becomes nameless, so she has no worries or concerns about data breaches. As she puts it, “I’m just putting my trust in the system.”
She continues to support medical research studies that benefit society, especially those that look to improve quality of life. She has recently taken part in a study about diet whereby she kept a food diary and had her vital signs checked for about 16 weeks. She has also planned to donate her body to science. Anne says to others that have been invited to take part in medical research that it is up to them, “but it is a really positive thing to do and it can make you feel good about yourself” in that you are contributing to your society.
Interview conducted in 2019.