Guest post by Lisa Willemse
Last month, on this blog, Paul wrote an article about loopholes in the clinicaltrials.gov database that allows for-profit companies to advertise their “therapies” under the guise of a registered clinical trial. This is a real concern for our community, especially those among us who have recommended the clinicaltrials database as a source of information for patients who are considering an experimental treatment and wish to better understand the difference between a clinical trial and an unproven, cash-based therapy.
Those of us more familiar with the language and methods used by the for-profit clinics may recognize their tactics hidden among the registered trials database, but given the credibility and trust the database has had up until now, it is reasonable to assume that a good number of physicians, patients and their caregivers may think that all the procedures listed therein are legitimate.
Before we get too far: This is not a blog about the clinicaltrials database, rather it’s about science communications, specifically, Super Cells, a science exhibit for kids.
It might seem odd to think about outreach to children in the context of the dangers of unproven therapies. After all, I don’t imagine too many 12-year olds are googling stem cell therapies. But jump ahead five or 10 or even 20 years, and who’s to say what they will be looking for? Like the public of today, they will need the tools enable them to winnow out the nuances in what they read online and, ultimately, make informed choices about their health and welfare. We can start with basic understanding of the science.
Recent surveys conducted in Germany and the UK (here and here) (US data comes from a meta analysis, not a single, directed survey; and recent Canadian data is not available) suggest that awareness of “stem cells” is quite high among the general public, however, there is little understanding of exactly what it means. Closing the gap in understanding is therefore a high priority.
No single communications strategy, on its own, will achieve this. We all know we’re living in a world of fragmented media, and in such a world, you need many channels of approach.
There are several initiatives available (including specific websites, resources and information portals) to directly address concerns the research community has about unproven therapies. Blogs such as this one, the one I co-edit, and others (examples here and here) also deal with this issue with regularity. When it comes to broad basic information about stem cells, there are also plenty of excellent resources to choose from: videos (feature length, short and in between), webinars and events, science cafés, and a myriad of teaching tools, to name a few. Everything helps, although, given that much of it is self-directed, it requires a pre-existing interest in the topic, and thus, may exclude audiences that do not seek out scientific content.
Kids, particularly school-aged ones, are a bit of a different story. While I’ve suggested that they are unlikely to seek out more complicated science on their own (unless it’s cleverly wrapped up in a game or a TV program, for example), they do engage with science topics in two important ways: through science curricula and enhanced science programming in schools, such as individual or group projects and organized trips to science centres, museums and other science events.
It was with these school trips and family vacations (i.e. a younger, lay audience) in mind that the Stem Cell Network embarked on the production of Super Cells: The Power of Stem Cells, a 1600 square foot (150m2) exhibit dedicated solely to stem cells. We weren’t alone in our interest in bringing this topic to life for students: CIRM, CCRM and the Cell Therapy Catapult came on board as partners and we received significant in-kind contributions from EuroStemCell.
Preliminary visits with children in schools and in science museums formed the basis for the content contained in the exhibit, which uses a variety of hands-on, interactive modules to reveal the important role stem cells play, not just in our early development, but in our daily lives and in our future health. When we spoke to them, kids wanted to know things like how a lizard grows a new tail, where does disease comes from, how we grow and heal and what is a stem cell.
Animations, touch-screen displays, videos and images are integral to the presentation of science, since this is what draws viewers in. Each of the four sections has a specific area of focus, whether introducing the concept of a cell, to explaining how stem cells form the body and continue to help us grow and heal, to showing where stem cells live in the body’s tissues and organs. One of the largest sections is a small replica of a lab, where visitors can see how stem cell research is done, what challenges exist, and can try their luck with a game that asks them to grow photoreceptors from retinal stem cells and implant the new cells into an eye, in hopes of giving sight to a person who has gone blind.
Super Cells was built by an award-winning team at the Museum of Nature and Science in Sherbrooke, Quebec, and was officially launched there on September 25, 2014. Next spring, it will travel to Europe for an installation at the Centre for Life in Newcastle and will return to Canada for the fall of 2015 before spending all of 2016 at various locations in California.
While a collection of interactive games, modules and supporting text is a long jump from helping people discern bogus from real therapies, it is an important first step in helping our next generation understand a little bit more about science and the incredible powers hidden inside their body.
Lisa Willemse is Director of Communications at Stem Cell Network
Nice article. It is true that we will recoer more quickly if treatment is done with some sort of fun.We must also know about our body inspite of having a doctor with us when we have some trouble.