A week from now, the inaugural international PopupStar teams who competed to run a community-based event to raise awareness of clinical trials will gather in New York to hear the winner of the competition announced. The PopupStar competition aimed to bring together teams inclusive of all the stakeholders of clinical research to drive grass-roots awareness raising.
Our contribution to the competition was the AskAboutClinicalTrials.com website and our team spanned community, industry, academia and health. Our official team included members of the public and representatives of Eli Lilly Australia, Sydney Health Partners, the Sydney Partnership for Health, Education, Research & Enterprise (SPHERE) and Research4Me (see the team here), as well as an honorary community team member, Andrew Warden.
While it will be exciting to be part of the gala celebration and surrounded by people and organisations as passionate as we are about raising awareness of clinical research as a care option, the real winners are the people in the community that now know a little bit more about clinical trials as a result of everyone’s toil and events .
While much of the community tend to be supportive of the value of medical research, few really understand how they can be involved and help drive the treatments of tomorrow. In CISCRP’s 2017 Perceptions and Insights Study looking into public and patient perceptions of clinical research, 85% believe clinical research is very important for discovering new medicines, and 64% felt that people should learn about clinical research from their doctors. 84% felt it is important to be aware of studies being conducted in their own communities and 95% said it is important for their regular doctor to be aware of studies.
Yet, 40% of people globally (rising to an alarming 56% in Asia-Pacific) were not confident they could find trials relevant to them, around 70% have never thought to talk to their doctor about trials despite 90% wanting their doctor to present clinical research options to them.
In a 2012 Australian government survey, on average 43% of people visit their doctor at least every 2-3 months. Australians said they would look to their doctors for information on trials, and 60%+ (increasing with age) are open to taking part in trials.
Doctors are clearly a key touch point and trusted information source for people around clinical trials. Yet, a recent PwC Health Research Insitute Report found clinicians are not generally aware of, or think about, clinical trials as an option for most patients.
When we thought about pulling together an event for PopupStar, we wanted to do something that might not only raise awareness but help that conversation between patient and doctors happen. That led to the idea of the AskAboutClinicalTrials.com (#AskAboutCTs) website, and the resources we developed both for patients and doctors to enable that discussion. And since there is actually little known about the patient experience of asking a doctor about clinical trials, we thought we’d invite people who took action to tell us about that experience in a survey.
Over the 10 day competition period (1-10Apr) in which we actively sought to promote the website through our social networks, publicity and an online advertising spend of around $1800USD (with thanks to the PopupStar sponsors), we achieved a bit of engagement around clinical trials, including the following 5min interview 2nd April on the Australian government-funded TV Network ABC’s News24 program.
Some of the key metrics included 900+ visitors to the website, 22 downloads of the conversation starter for patients and 89 downloads of the resource for doctors. Five people shared their experience talking to their doctor about clinical trials and 2 of those said having done so, they were more likely to consider clinical trials in the future. What is interesting, is that though we focussed advertising only in Australia, the power of social media means that people beyond Australia were also connected into the campaign. Now that we have built the website, it also has longevity as a resource to help patient and doctors talk about clinical trials. This is demonstrated in the fact that despite no advertising, with occasional social media mentions, people are still visiting the website. Our next job is to make sure we continue to improve the resources available there and increase impact.
Events to raise awareness of clinical trials are really important for changing the statistic that 80% of clinical trials are delayed due to inability to find people to take part, hence delaying how quickly we get access to better healthcare. You just never know what will attract someone’s attention, when, that could result in changing their life and that of future patients. There is no one single event, message or story that will solve this problem, so campaigns like #OnePersonCloser, #HelpingOurHealth, #WhyWeDoResearch, #IAmResearch, #WhyClinicalTrialsMatter, #AskAboutCTs, etc all deserve our support and sharing. And there is plenty of room for others.
What is also important is that we start to measure and share the impact of campaigns like this. PopupStar was good for encouraging that. Though we haven’t changed the world with this campaign and gotten in front of hundreds of thousands of people, you never know the ripple effect. So we’ve shared some of the metrics about our ‘success’ publicly so others can perhaps learn from them and think of new ways to increase impact. What we are still missing though are the personal impact stories. A little of that personal impact will be shared at the gala night, but it is important those stories are also collected and shared. It’s not always about the numbers – even changing one person’s life for the better makes it all worthwhile.
We are delighted we had an opportunity through the PopupStar competition to get the seed funding to start this campaign. Thankyou to the sponsors that invested in the teams, and thankyou to the Sydney ACT team for your support and contributions. Congratulations to all our fellow PopupStar teams for your efforts, and we look to forward to meeting you and raising the flag for Australia’s efforts to increase trial awareness on 31 May. Keep an eye on our social media and the #PopupStar channels to see who wins when it is announced 6-8pm 31May EST (8-10am Fri 1Jun for those of us on AEST).
And next time you are in front of your doctor, do yourself a favour. Investigate all your options. Ask About Clinical Trials. Visit AskAboutClinicalTrials.com if you need help starting the conversation, or join the Research4Me community and/or Facebook group to connect, ask questions and share experiences with others interested in medical research.