Ideathon: the project inspiring hope in clinical trials
Improving clinical trials awareness and recruitment is not a ‘healthcare’ issue – it’s an ‘everyone’ issue – and a new event taking place next week aims to generate ideas to improve public participation.
In the 1970s, just one in two people would survive a cancer diagnosis. Today, two-thirds of people will survive for five years or more following diagnosis. However, while the quest for higher survival rates and improved treatments across therapy areas continues apace – due, in no small part, to the painstaking research of clinical trials – patient recruitment for trials remains at an all-time low.
With some estimates venturing that just 5% of the patient population participates in trials, this lack of awareness not only denies patients viable alternatives for treatments, but can also hold drug development and medical progress back years. This is something that the Inspiring Hope Ideathon, a new crowdsolving competition, is hoping to change.
Taking place 27-28 September in Boston, US, the event is open to any and all innovators and has set out to generate fresh and exciting ideas in a bid to raise awareness of the importance of clinical trials and markedly increase public participation. The winning entrant will be awarded a prize of $10,000.
“We’ve really gone outside of conventional arenas,” says Clare Grace, PhD, Vice President of Site and Patient Access at INC Research, which is working in partnership with the Center for Information and Study on Clinical Research Participation (CISCRP) to bring the event to life. The Ideathon is assembling a cross-section of stakeholders who all have an interest in driving awareness of clinical trials – from technology companies to patient advocacy groups and the general public. “We’re trying to get a good mix,” adds Grace. “The Ideathon is not just for pharma and biotech, but all groups across the industry who are committed to promoting awareness and driving new ideas in clinical research.”
“Without clinical trial participants, new medicines and discoveries simply wouldn’t be possible,” observes CISCRP Founder Ken Getz. “It is essential that we engage patients and the local health care community as partners in the drug development process. We are very excited about entering into this collaboration with INC Research to raise public awareness about clinical research, to educate the patient community and to ultimately strengthen patient engagement.”
Global issues require a global solution
New ideas are not something that Grace and her team have in short supply. Despite being in its inaugural year, the Ideathon has attracted more than 70 entries from around the world since its launch in May. Clearly the event has struck a chord. “We were quite overwhelmed,” Grace points out. “The response has been exceptional with entries from all over the globe and across a broad spectrum of interest groups – we even had one school submit an entry.”
Christine Zahren, Ideathon finalist and Director of Clinical Trials Connect, based in Victoria, Australia, is one such entrant. Given that Clinical Trials Connect seeks to address the very same need in Australia and New Zealand as the Ideathon does on the global stage, the opportunity to help raise awareness of clinical trials on a larger scale was too good an opportunity to miss.
“Having an awareness and understanding of clinical trials means patients have access to options they wouldn’t otherwise,” says Zahren. One of 14 finalists, her team, ‘Clinical Trials Connect (CTC) White Coats’, will present a video and media awareness campaign to communicate the availability of clinical trials globally and early access to cutting-edge, lifesaving therapies.
“We hope our message will help people connect to opportunities they didn’t previously have access to,” Zahren says, noting that, through participation alone, the finalists have already taken great steps towards promoting trials awareness. “There are some fantastic ideas being shared by other entrants, and if just one more person learns about clinical trials and their role in healthcare, then I feel we’ve done our job.”
Creating awareness among healthcare providers
The importance of such events cannot be understated. With the exception of the occasional media story, the benefits of clinical trials and opportunities for patient recruitment rarely earn the public gaze.
“If you look at clinicaltrials.gov, as of today we need somewhere in the region of 58 million patients, just to fill current demand,” Grace notes.
Of course, lack of awareness doesn’t end with the general public. The creative team behind the Ideathon also recognises the need for greater awareness of ongoing trial recruitment among healthcare providers. “There is an issue with public awareness,” Grace states, “but there’s also the challenge of awareness among healthcare professionals – whether they are physicians, nurses or dental practitioners.”
“If you look at the CISCRP 2015 Perceptions & Insights Survey, when respondents were asked if they would have participated had they been offered the chance, the number that said ‘yes’ was up in the 70th percentile,” Grace goes on.
Promoting universal access
One individual who understands the importance of participating in clinical research studies is Ideathon keynote speaker, Jameisha (Meisha) Brown, who was diagnosed with Burkitt lymphoma at the age of eight. Using her teddy bear and drawings on a whiteboard, Brown’s healthcare team helped her to understand the disease and available trial options. “I feel certain that because the information was related to me in a manner I could understand, it aided in my comfort with the uncertainty associated with clinical trial participation,” she comments.
Long since in remission, Brown considers herself a ‘Cancer Thriver’ and is pursuing a PhD in Health Education while also advocating for clinical trials and trials data to be made culturally and socially accessible to the general population. Brown’s participation as the keynote speaker is driven by this belief. “Many times over, breakthrough clinical research has given me a future and unrelenting hope. I admire the courage and tenacity of the brilliant minds submitting their ideas to advance participation toward streamlining new medical discoveries.”
Whoever wins at the 2016 Inspiring Hope Ideathon, Clare Grace has no doubt that good things will stem from the event, and she hopes that the Ideathon’s contribution to drug discovery and patient welfare will be far-reaching and long-lasting. “There’s a huge need to increase the awareness of where new drugs come from and how they’re developed,” says Grace, “and by improving that awareness, it helps patients to understand that they are vital partners in that drug development process.”
The Inspiring Hope Ideathon takes place on 27 & 28 September 2016 at District Hall, Innovation District, Boston, US. For more information, visit the website: http://inspiring-hope-ideathon.com or follow the conversation #ideas4patients.
About the author:
Craig Sharp is a healthcare writer at pharmaphorum. He has over eight years of business journalism experience in the healthcare, process excellence and display advertising industries.