Exploring the motives in volunteering for research
Three volunteers waived their anonymity to share their experiences of taking part in health research
Mary Lennon at her home in Leopardstown, Dublin. Photograph: Brenda Fitzsimons
Bernadette Clancy: As a direct result of her involvement in Tilda, she discovered she had osteoporosis.
Volunteers are an essential part of research and as health journalists, we are often asked to publicise different research projects that are seeking participants to test hypotheses. These projects can range from those investigating the value of specific nutrients on conditions such as diabetes or cardiovascular disease to those testing new cancer drugs to those monitoring the long term health of the general population.
Often, the results of these research projects are released amid a flurry of expert analysis and opinion but the volunteers themselves remain anonymous and are rarely called on for their views of the findings. Below, we interview three volunteers who waived their anonymity to share their experiences of partaking in health research.
Volunteer with The Irish Longitudinal Study on Ageing.
Bernadette Clancy from Creevy, Rossnowlagh, Co Donegal, was randomly chosen for The Irish Longitudinal Study on Ageing (Tilda) when it was first launched in 2006. She willingly agreed to be interviewed in her home and to travel to Trinity College Dublin for tests every two years over the 10-year duration of the study.
“I’m delighted to partake because I hadn’t really thought much about the process of ageing and the way people treat you when you are older. Partaking in the study has made me more aware of my physical self and also about keeping my mind active,” says Clancy.
Tilda collects information on all aspects of health, economic and social circumstances from 8,000 or so people aged 50 and over. Due to the breadth of data collected on physical and mental health, it is considered to be one of the most comprehensive research studies of its kind in Europe.
As a direct result of her involvement in Tilda, Clancy discovered she had osteoporosis. “I didn’t do anything about it for nine or 10 months but then I started treatment and two years later, it has improved. I wouldn’t have known anything about it if I hadn’t been in Tilda,” she explains. “Now, I believe every woman should have a Dexa Scan because if you’re treated for osteoporosis, you won’t become one of those people who break bones.”
Clancy says that the memory tests she had done for Tilda has encouraged her to do exercises to improve her memory. “For instance, I do little maths tests for a minute three times a day,” she says. “But, most of all I’m very grateful to Tilda for picking up on my osteoporosis.” tilda.tcd.ie
Mary Lennon worked as a nurse for many years, which, she says contributed to her interest in health, nutrition and the value of research for advancing knowledge. “You always learn a little bit about yourself as well,” says Lennon who volunteered for two long-term cancer drug trials with St Vincent’s University Hospital, Dublin, and more recently a nutritional study at University College Dublin.
Lennon first volunteered to become part of a multi-centre randomized drug trial when she was having chemotherapy to treat breast cancer in 2007. “The purpose of the trial was to compare the effectiveness of Gemcitabine with another standard drug in the chemotherapy cocktail,” explains Lennon. “I had six sessions over four months and the trial participants are then monitored and compared with the control group over a 10-year period. Analysis of the data will inform future therapy for women who get breast cancer,” says Lennon.
Subsequently, Lennon volunteered to partake in a seven-year trial studying women who have oestrogen receptor positive breast cancer. It is known that blocking oestrogen in these women may delay or prevent recurrence of the cancer. “The trial compared two different drugs, Letrozole and Anastrozole to determine if one was more effective than the other. I took Letrozole for five years and am still being followed up,” explains Lennon.
More recently, Lennon put herself forward for a nutritional study investigating whether a milk protein had a role in balancing blood sugar levels for people with diabetes. This involved taking the milk protein substance and having half-hourly blood tests over three hours on two occasions. “This appealed to me because it would provide me with baseline information about my metabolism, my weight and my blood. I also got some useful nutritional advice and was interested to hear the latest nutritional theories,” says Lennon.
Partaking in a drugs trial for Alzheimer’s Disease
Robert O’Connor was diagnosed with Alzheimer’s Disease three years ago. He and his wife, Marie, returned to live in Co Kerry after spending much of their lives in the United States. While still in the US, O’Connor partook in a trial testing a drug for Alzheimer Disease and was keen to be involved in another trial upon his return to Ireland. “I had to find something to do or say because really, there is nothing treating my Alzheimer,” says Robert O’Connor. His wife, Marie O’Connor, is a nurse and encouraged her husband to partake in the current trial which is investigating whether a blood pressure pill has another use in the treatment of Alzheimer Disease.
This involves the O’Connors travelling to St James’s Hospital in Dublin every 13 weeks for physiological and cognitive tests and monitoring of any possible side-effects of the medication (Nilvadipine). “It was very reassuring to start this trial because in Japan, symptoms of Alzheimer Disease were halted in those on whom it was tested,” explains Marie O’Connor. “We feel that partaking in the trial allows Robert to have access to the most advanced medicine as well as helping future generations. I don’t feel he is any different on the medication but his condition is progressing at a slow rate.”