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Participating in research: What can be learned from a real example?

Ever wondered what it’s like to volunteer in a scientific study? Donating blood, saliva or even simply answering a questionnaire can go a long way in assisting crucial research, and is a great way to influence the future of healthcare from outside the lab.

For this feature, we spoke to a recent study participant, Dave, who took part in Our Future Health – a UK initiative aiming to recruit millions of people, whose data will inform research into preventative medicine and new treatments. We explore Dave’s experience, the impact it’s had on him, and what researchers can learn from a volunteer’s point of view.

What is Our Future Health?

Before going any further, we’d like to give an overview of what the Our Future Health initiative is. Our Future Health is the UK’s largest ever health research programme, aiming to ‘revolutionise the way we fight disease’. The main way in which the initiative aims to achieve this goal is through finding ways prevent disease, and detect and treat illnesses earlier.

In order to meet this goal, Our Future Health are aiming to recruit 5 million volunteers, who will answer questionnaires about their health and provide blood samples so that their genetic data can be analysed. Recruiting a large and diverse community of volunteers is vital to ensure that the data is representative of the population and can provide the most value for the most people.

How to find a volunteering opportunity

Volunteering in a study such as this is one of the best ways that the general public can work to improve healthcare and scientific research. But getting involved in a large-scale study, as one of millions of participants, can be daunting for some. We recently spoke to Dave, who told us about his experience participating in the Our Future Health initiative, and his views on volunteering for further studies.

The first question many of you may have: how do I even find initiatives like this? We asked Dave how he came across the study, as a member of the public who is typically not involved in science.

“I learned about it via a letter that I got. I checked it out and it said ‘please join Our Future Health.  You’ll be a big help. We’re doing big things, big science.’ So, of course I thought it was a good idea.”

Our Future Health are sending letters to various cities and towns, detailing the role you can play in the future of healthcare. But many studies don’t reach the general public in such a targeted way – Dave himself admits he likely wouldn’t have taken part if the information hadn’t been sent straight to his front door. This begs the question, how can researchers ensure that volunteering opportunities are made public, so that a more diverse range of people can participate? This is something that is especially tricky if a project doesn’t have a large budget, but this has clearly been effective for Our Future Health.

What is it like to participate?

The next question you may be asking about participating in a study like this is, ‘what is it actually like?’ Whilst we can’t make a case for every study – some will ask for blood, salvia or simple questionnaire answers, while others will have more serious or time-consuming requests – Our Future Health asks participants to complete a health questionnaire and provide a small blood sample at a local clinic.

“Booking the appointment was no problem,” said Dave. “It was just in the local Boots. I actually hate needles and felt really faint, but the staff were really understanding and helpful. The questionnaire was also fairly standard and didn’t take too long.”

Why take part in a scientific study?

It may seem obvious to researchers and those working in the field, but many members of the public may not know why they should participate in research. Having a large and diverse cohort is vital in genomics research, in particular, but without a background in science, many may not appreciate this. As someone without a science background, Dave stated that he understood that he was taking part in medical research, but ultimately wasn’t sure what the project would entail. That said, he told us that he was glad he took part, and that the only thing that was needed to convince him was the idea that it would help a lot of people.

“It’s something that I’m interested in, but don’t actively seek out, but I do like the idea of helping people.”

This highlights an important part of the scientific process that is often overlooked – altruism. Without volunteers coming forward with a desire to help, research would stall. Therefore, many studies rely on their volunteers having a degree of selflessness, as most studies don’t have the budget to reimburse participants. However, Our Future Health are now offering a £10 high street voucher (that can also be donated to charity) for completing the process, and volunteers may be given an update on things like their cholesterol levels after donating their sample.

“Honestly, that was a big part of my motivation. I hadn’t had a health check in so long, so I wanted to know my blood pressure and cholesterol levels!”

What can researchers learn from this?

Recruiting the public for studies, particularly large-scale projects, can be difficult, but is necessary for ensuring the quality and diversity of the data. The main messages that we took away from Dave’s interview were that often the public are not seeking studies out, and some individuals may need a nudge in the form of some kind of targeted advertisement (like the letters sent by Our Future Health) in order to become interested. Clear messaging around the purpose and aims of the research, including how sensitive data is handled, in all materials is also necessary, as well as ensuring a smooth volunteering process.

Is it necessary to entice volunteers with some kind of reimbursement? Dave said no. Although he valued the information he received after his appointment regarding cholesterol levels, the idea of making a difference was enough to him, and he would happily volunteer in future studies, too. He says, “it was easy. It only took 20 minutes out of my day. So, I’d like the idea of doing something like it again.”

Looking to the future

Large-scale projects like Our Future Health are different to the typical research that most scientists are carrying out, but the principles around recruiting volunteers are similar across all fields and projects of all sizes.

Our Future Health recently updated their website to say that over 1.5 million individuals have now participated in the initiative – a significant number in comparison to the widely used UK Biobank, which has been integral in genomics research over the years, yet only follows the health of 500,000 patients. Our Future Health aim to more than triple the current number of volunteers, making it one of the largest projects of its kind. To do so, they require an effective recruitment method, and they’re clearly doing something right.

So, what’s next? Dave says that he’ll be watching for results coming from the data, despite having had little interest in the topic before taking part, and will watch out for future opportunities. This highlights the benefits of involving the public in research in some capacity, with the knock-on effect being an enhanced understanding and interest in the subject.