Teaching Children About CTs

Each August, Science Week runs across Australia. It is an opportunity to raise the profile of and engage people in science and research, from small grass roots events to large scale citizen science projects. This includes teaching children, who will be our next generation of STEM leaders.

As a mum (who happens to be scientifically trained), instilling a sense of wonder at the world and a creating a questioning mindset in my young son is very important. This year, I approached his childcare teachers to see if they would be interested in having a chat for Science Week about what scientists do, using clinical trials as an example of research process. This may have been an ambitious idea for a group of 3-5year olds, but I wanted to give it a shot, and the childcare were open enough to try it.

So here’s what I did…

The children (about 16) were gathered together as a group and I posed the following questions (with tips on the discussion levelled at the 3-5year old age group):

  • Who has ever had questions about the natural world? (Tip: Elicit questions using example like why is the sky blue? What forms rainbows? How do kangaroos jump? Why do balls run down hills? Why do I go red when I run?)
  • What is a scientist? (Tip: Someone who asks questions, and follows a method to answer them).
  • Who can be a scientist? (Tip: Anyone with a sense of wonder)
  • Explaining the kind of scientist I am (Tip relevant to me: a clinical trials specialist)
  • Who has ever been to the doctor? Did you get a medicine? (Tip: Talk about how clinical research is how we figure out what treatments are safe and work)
  • Next, I asked ‘Would you like to help me run a clinical trial?’ (Tip: Explain the concept of consent ie, that researchers should ask you first before getting you involved in any research.)

On the basis that the group were happy to ‘run a trial’, the following was done…

  • I asked ‘How do Smarties make you feel?’ (Tip: Talk about how there were many different answers. That’s why we do research – to get a better idea of what the answer is).
  • Assuming the answer would be ‘happy’ (see learning below), I asked ‘Which smartie colour makes you feel happiest? Blue, red or yellow’. I counted the show of hands for each colour. (Tip: Talk about the difference between assuming which colour makes you feel happiest (which we just did) and knowing the answer. That’s why we do research – to know, and not just assume.)
  • I asked how we might go about figuring out which colour made you happiest. (Tip: Explain that discussion is the process of designing the research/trial. At this point though, after a couple of minutes of off-track discussion, I ended up needed to tell them how we could go about it).
  • A couple of concepts introduced in broad terms were 1. ‘bias’ and why we use blinding to prevent it (ie why we need to use of the mask in this trial), and 2. the idea that all research needs to be approved before it starts (Tip: In this case, talk about how the teachers had approved the experiment in advance (like an ethics committee), and reviewed ‘amended procedures’ on the day before implementation).

Once the ‘planning and design’ was done, I went on to the operational phase of the trial.

  • I described in details to the group they would be asked to do (see below). I asked for a show of hands of  who wanted to take part in the ‘trial’ (asking consent). Participants were then asked to sit in a ‘waiting area’, separate to where the testing was happening, until they were called for testing.
  • I asked who wanted to help collect data (In our test, depsite early volunteers, the teachers ended up being the ones who helped kids write 1, 2 or 3 on a piece of paper to indicate their preference).
  • Before each participant, I then dispensed smarties to dishes 1, 2, 3 (the same order for each participant – red, blue, yellow) and covered dishes with cups.
  • Once a child was then seated and blindfolded/eyes covered manually, I either led their hand to each cup, or ended up putting the smartie in their hand to eat. After each Smartie, I asked them to think about how happy it made them feel.
  • After the 3rd smartie, Children were directed to the data collection table to circle/write on a piece of paper the number of the Smartie that made them feel happiest (1, 2 or 3), and the paper was put into a container.

Once all the data was collected,

  • I asked for volunteers for a child to be number 1 2 or 3, and then sorted the data (pieces of paper) to the relevant child to hold.
  • Child 1, 2 and 3 counted how many pieces of paper they were given, to find out which number got the most.
  • I announced which number was which colour, revealing which colour made people the happiest.

By the way, for this group, the answer to the question ‘Which Smartie colour (Red, Blue or Yellow) makes you happiest?’ was RED.

teaching children about clinical trials

 

As basic as this trial was, and as young as the participants were, I was reminded of a number of lessons  that have broad applicability in ‘real’ clinical research.

  1. Getting the research question right. When I sat at home thinking up an appropriate research question to test with kids, I assumed ‘happy’ was the way kids felt eating Smarties. But actually, when I asked the question ‘How do Smarties make you feel?’, I got so many different emotions fed back, and ‘happy’ was a word not one of the kids used. Strike one for me as a researcher! This demonstrated to me why it is so important we ask the people we are seeking to study to develop and sanity check our research questions. My experiment was not particularly important so forcing a research question on participants that they couldn’t necessarily relate to didn’t matter. It is not a stretch however to see how clinical trial recruitment and retention might get off track if the same thing happened for ‘real’ experiments. We have a duty to our participants to make sure we are doing research that matters to them. Involving them early will make sure that happens (and likely improve operational success too).
  2. Capacity and willingness to consent. One might imagine that with an offer of chocolate, all kids might have wanted to be involved in the ‘trial’. However, when we explained what was going to happy (ie provided detailed participant information), not everyone did. Some kids were just shy, some didn’t like the ‘treatment on offer’, some were scared of the ‘procedure’ of covering their eyes to mask which colour Smartie they were eating. Even at this very young age (3-5years old), children were showing their decision making capacity – a factor important for consent. We naturally respected the wishes of all kids that chose not to participate directly, and still gave them capacity to be involved in other elements of the research, such as data collection, data analysis and results communication. There is much food for thought here for me when we think about assent with children and young people in clinical research, and the different ways people can contribute to research, beyond being participants.
  3. Making study procedures participant-centric. It might be a very simple thing, but figuring out how to keep 3-5yr olds from knowing the colour of the Smartie they are going to eat needed a little thought. My original design was to provide an eye mask that they would wear as they tried the 3 different colours. But, once I got on the ground, a ‘protocol amendment’ was needed to improve recruitment – the option for kids to cover their own eyes. Strike two as a researcher! I probably could have avoided this time delay I experienced getting kids involved had I asked some how they might like to keep they eyes covered for the test in advance. It demonstrated a need to be mindful of what participants are willing to do in order to maximise recruitment – something I know many clinical researchers think about all too late. The best way to figure this out? Involve the potential target audience in your trial design processes.
  4. There’s a strong desire in participants to unblind.  My biggest challenge in this experiment was finding a way to present the Smarties to participants in a way that kept the colour secret. Most of the kids wanted to have a peak under the containers to see what colour was next, or uncover their eyes as the Smartie was placed in their hands. It demonstrate there is an innate curiosity in everyone to know what is happening to them from an early age, so we can’t be surprised that participants in a blinded clinical trial might sometimes goes to long lengths to figure out which treatment group they are in.
  5. The value of randomisation in preventing bias. There was an obvious design flaw in my trial that became obvious when the result was known.  Given the Red Smartie was the first Smartie given in the test (ie #1), was it coincidental that Red was what made the children happiest?  Perhaps Red won because the first taste of chocolate was always going to be the most pleasurable bit. I could have made the trial design more robust by including randomisation, and changing the order of the Smartie colours between individuals. Then, reviewing the order of Smarties along with the preference for colour might have given a more robust conclusion.
  6. Everyone wanted to know the results. Whether children participated in the trial or not, they all wanted to know what the results of the experiment had been. Luckily, I was able to give pretty immediate feedback given the short period of the experiment and data analysis. However, consider how this plays out for more clinical research participants right now… It can be a significant amount of time before they find out the results of the studies they are involved in, if at all.  In my view, we need to make sure we respect our research participants by addressing their need for information and making results known to them as quickly as possible. It is very the least researchers should do.

At the end of the discussion, I asked the children whether any of them thought they might like to be a scientist. About half put up their hands, which was very encouraging. The likelikhood the discussion I had with them on that day will have any long term impact is pretty remote. But it’s never too early to expose children to new ideas and concepts, and I had some fun doing it. You never know, sitting in that room may be a future potential trial participant, citizen research partner, scientist or nobel prize winner.

What I didn’t expect from such a simple exercise teaching children were the observations that so closely relate to running clinical trials for real. There are plenty of learnings in there for all medical researchers.

I’ve shared in this post what I did and observed for others that might want to do something similar to expose kids to the idea of science and clinical research, or have ideas for improving the ‘lesson’. If you are interested in doing this yourself, please let us know in the comments or by email/social media, and share the experience. We ‘d love to collaborate with childcares, schools and those in clinical research to see how this could be done more broadly for Science Week 2019. It’s never too early to be teaching children about science and clinical research.

Please reach out if you have any thoughts.

 

Janelle Bowden,

Founder, Research4Me

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