Meet some of the people who volunteer themselves to advances in medical science at SAHMRI

They put their bodies on the line, trial new medicines, submit to tests and answer probing, personal questions — all to help us all lead healthier, happier lives.

Medical research volunteers are a special breed, coming from all ages and walks of life. Beyond recouping a few minor personal expenses, they gain only the satisfaction of serving the greater good.

“Their motivation is entirely selfless and giving,’’ says SAHMRI researcher Dr Michael Musker.

“There is a lot of work to be done and most people I talk to just want to help others.’’

The research projects are as varied as the volunteers.

At SAHMRI alone, up to 40 clinical trials are currently in progress. The National Health and Medical Research Council estimates around 1300 clinical trials take place in Australia each year.

Of course, some projects require more stoicism from their willing “lab rats” than others.

Dr Musker says the most invasive study he has been involved in was investigating Chronic Fatigue Syndrome (CFS, also known as myalgic encephalomyelitis), and involved placing a cannula in the volunteers’ arms, allowing researchers to draw blood over eight hours.

“When you get a needle put in your arm it is reasonably painful,’’ he admits.

“Sometimes that (cannula) can stick and there can be a problem. It doesn’t always go perfectly.’’

Penelope McMillan volunteered for that study. As SA president of ME/CFS Australia, the 61-year-old is passionate about increasing knowledge about the condition and making a difference.

“People (with ME/CFS) often have difficulty accessing disability and welfare supports, even for those people who are so ill that they are fully confined to bed for years,’’ she says. “Research participation validates our own individual illness, as well as providing validation for the community.’’

Ms McMillan’s personal stake is not uncommon among fellow volunteers. Dr Musker says most participants have a special interest in the area in which they volunteer.

Before signing up to any study, volunteers get an information sheet which outlines everything they are required to do and experience — including potential pain or discomfort.

“You are being exposed to some things you normally wouldn’t be exposed to like X-rays,’’ Dr Musker says. But the human lab rats aren’t always most concerned about the things you’d expect.

“Sometimes I have to take a spoonful of hair,’’ he says. “Having a researcher cut your hair is quite scary. I’m not a hairdresser. Almost everybody worries about their hair. ’’

Dr Musker’s main field of interest involves mental health, driven in part by data, which shows in SA depression can affect one person in 10.

Depression studies can involve asking personal questions about a person’s interest in sex, for example, or revisiting a private trauma.

“We ask some uncomfortable questions sometimes,’’ Dr Musker says. “We’re discussing very personal stuff you wouldn’t necessarily reveal to a stranger normally.

“Sometimes we ask people about their past traumas — you’re bringing up a lot of uncomfortable issues people wouldn’t want to look at.’’

Thankfully, those willing volunteers are ready to step up. Studies are carefully shaped to avoid duplication. “You look at the most common disorders that you can, add the most amount of people that’s going to be cost-effective and where you can make some breakthroughs and improvements,’’ Dr Musker says.

“Then, you look at cutting-edge research and keep up to date with the journals.

“We look at what other people are doing and benchmark ourselves against them and try to go in a specific direction.

“You wouldn’t want to do a piece of work that’s already been done somewhere else in the world or is currently being researched.’’

VOLUNTEERING IN THE CAUSE OF MEDICAL SCIENCE

1. JENNIFER KINMONT

• Age: 79
• Occupation: Worked in advertising and publicity
• Costs to the volunteer: None
• Reimbursement: None
• Volunteered for: Chronic Myeloid Leukaemia and Mental Health Assessment

What it involves:

A mental health assessment lasting 1.5 hours, then a neurocognitive function test for 1.5 hours, but then further neurocognitive test twice during the year, fortnightly blood test/vital signs checked and monthly specialist appointment.

I have to keep a diary of the times I eat, around my drug taking. I have to fast for two hours before and one hour afterwards which can be inconvenient and constricting.

Why volunteer?

It was suggested to me by my specialist but it was optional. I agreed to do it to assist understanding of any side effects. I’m on a new study drug hopefully to control my CML because I have been on three others, which haven’t helped very much. This is a new drug and I agreed to try it. It’s a good thing to try something that might help other people as well.

2. PENELOPE MCMILLAN

• Age: 61
• Occupation: Retired early as psychologist and teacher due to disabling illness
• Volunteered for: Chronic Fatigue Syndrome study
• Cost to the volunteer: None
• Reimbursement: Gift voucher

What it involves:

It involved a half day of clinical assessment, including interview, questionnaires, a DEXA (dual X-ray absorptiometry) scan and a series of screening blood tests.

Also a full day of taking blood at SAHMRI — every seven minutes for eight hours using a gadget which was attached all day to draw the blood easier.

Why volunteer?

Those of us who are well enough to participate do it knowing that it may harm us, but also knowing that we are doing it not just for ourselves, but on behalf of those who can’t.

3. MADISON WEST

• Age: 9
• Occupation: Primary school student
• Volunteered for: Active Healthy Kids Australia Youth Advisory Council (AHKA YAC).
• Cost to volunteer: None
• Reimbursement: None

What it involves:

We have had four meeting so far. We attend meetings (an hour once a month) through the computer and talk to kids from all around Australia. We get asked some questions about ideas others may have for our tasks, and I get to have my say about ideas I might have or other ways other people’s ideas might work. I take notes in my book about ideas ... and how I can help at the next meeting. I don’t do actual exercise for this, I do exercise with my own tennis and cheerleading, and riding to and from school. We don’t do exercise for this group, we talk about how we can help others to want to do more exercise or make exercise more fun for kids who don’t like doing it now or don’t like joining in with others.

Why volunteer?

Because I thought it might be fun and to help others, and I thought I might get to meet new friends from all over Australia. I have — it’s been heaps of fun. I like that even though I’m nine I get listened to. I like feeling like I’m a part of the group.

I hope that we get to have a big get-together and I get to travel somewhere on a plane and get to meet everyone in person.

4. CECIL CAMILLERI

• Age: 60
• Occupation: Mental Health Advocate
• Volunteered for: Consumer and Carer Research Consultation Group
• Costs to volunteer: Travel cost (from Barossa to Adelaide) — minimal when I use the train
• Reimbursement: None

What it involves:

One meeting every two months. and provided with information about current and future research.

Why volunteer?

I bring an informed opinion/feedback, one that is based on the lived-experience of having lived with and continue to recover from Bipolar Affective Disorder. My involvement with SAHMRI and the other organisations ... has enlightened me and, in some instances, provided a safe place for unsafe ideas. I purposefully researched the best way of being of service to those who are among the most vulnerable in society. I established and developed a structured portfolio of activities that range from frontline service to policy and strategy, including research.

5. JOSH HASTE

• Age: 28
• Occupation: Newly graduated teacher (Bachelor of Arts/Bachelor of Education)
• Volunteered for: Psychological Interventions for Depression and Weight Gain
• Cost to the volunteer: Parking costs/petrol
• Reimbursement: Parking

What it involves:

Psychological interventions for people who have depression and are overweight. A one-off interview, a smell identification test, a blood sample for genetic analysis, a 10-week two-hour intervention program, with four interviews across the year to assess progress (one and half hours each interview). Involves four two-hour assessments across the year.

Why volunteer?

I had hoped that my experiences would help others, so if (researchers) were able to learn how I reacted to things and how I reacted to the world and they were able to develop a program, that would be good.

I really enjoyed it. I found the topics (weight loss and depression) being discussed in a group ... made it so much better.

I know for myself I’m not likely to do much exercise. Being in a group really helped and it seemed to help a lot of other people as well. There were people who were really shy at the start and by the end they were really friendly.

This story was reproduced with permission from The Advertiser.

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