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“Any sufficiently advanced technology is indistinguishable from magic.” – Arthur C. Clarke
Apple has a knack for making technology that, to paraphrase Arthur C. Clarke, feels a bit magical. It turns out that’s the sort of technology people strongly prefer to use. As a result, Apple has built a loyal consumer following, suggesting that commitment to a delightful technology experience is simply good business. Professionals in all industries have taken note of Apple’s success, and clinical research professionals are no exception.
I and others working in clinical innovation have looked to Apple for inspiration on how we might use technology to improve the patient experience. How can we make research participation more delightful and less frustrating? How can we distill a very complex process into an experience that feels very simple for research participants? How can we make clinical research more…Apple-like? Now we won’t have to look much further for potential answers. Apple itself is seeking to answer these questions.
Apple recently announced ResearchKit, creating waves far beyond the clinical research community. ResearchKit is an open-source framework that provides researchers and application developers with a platform to build mobile study apps. Apple’s announcement was accompanied by the release of five ResearchKit-built apps. Because the ResearchKit framework integrates multiple capabilities into one platform, researchers have a single destination to conduct research. And patients have a single destination to participate in research, simply by downloading any chosen study app onto their mobile device.
The following blog post is by Tom Krohn. Tom is the Chief Development Officer for TrialReach and is responsible for business development including clinical trial sponsor relationships, patient advocacy groups and research institutions. He has 25 years of experience across different sectors in health including large pharma, hospital & retail pharmacy, and the developing world. Most recently, Tom led the Clinical Open Innovation team at Eli Lilly with a focus on patient engagement, open data and business transformation. Tom is passionate about serving patients from their point-of-view while building sustainable and highly effective organizations.
Everyone Has a Story
Everyone has a story. You. Me. Innovation.
About four years ago, a small group of Lilly employees started work on open innovation with a focus on improving public information to accelerate medical innovation. Barry Crist and I wrote a whitepaper that outlined a vision for clinical knowledge generation becoming participatory for all in the clinical research ecosystem, especially patients. Participatory—that is the essence of an open network. It is at the core of open innovation.
With executive sponsorship and a case for action, we took these ideas and developed an open API which launched in 2012. We put Creative Commons copyleft licensing on the API to remove the friction that is the norm of the life-science industry. Then, open innovation happened.
Photo by Ryan McGuire from Gratisography.com
At Lilly COI, we remain keenly interested in new tools, models, technologies and approaches to addressing healthcare information challenges and to considering how they might be applied to improve clinical research. Through our online travels, we’ve recently come across Iodine and find some of the concepts within their approach worth sharing.
With thousands of prescription and over-the-counter drugs currently on the market, the process of trying to understand what you’re taking can be intimidating and confusing. The idea of reading all the tiny print on the package inserts can be overwhelming. And oftentimes, doing a Google search doesn’t provide much additional help. The search results can include articles from medical journals, websites that list basic drug information and side effects, and discussion boards where patients share their individual experiences with a drug. How do you find time to sift through all of that and make sense of it?
Similar problems plague the process of finding a clinical trial, and of getting access to easily understandable results of the trial afterward. Finding ways to streamline this information and make it more readily available to people is becoming an area of increasing focus. Companies like Iodine are providing us with some examples of how this can be done.
Photo from Unsplash. By Elisabetta Foco
Each year, thousands of people participate in clinical trials. Much of our recent focus has been on patients enrolling into trials, and what happens once they’re in. But, what about what happens after trial? Patients and caregivers I’ve talked to have indicated that a lot more can be done to let them know that they are appreciated, and to connect them to the larger story of the treatments they are helping to bring into the world.
Data from CISCRP seems to support the anecdotes I’m hearing. They cite a 2008 survey (Getz. The Monitor. September 2008: 17-21.) in which most trial participants said they felt they were “no longer valued” by researchers. This is a shame. Advancements in drug development would not be possible without these volunteers. None of them should leave a study feeling unappreciated.
In fact, leaving them feeling this way can have further consequences. A different survey said that “most study volunteers choose not to advocate clinical research among patients who are considering participation.” There could be any number of reasons for this, of course, but leaving them feeling abandoned after the trial ends certainly doesn’t help. Actually, I would argue that delivering a great experience is the best way to boost enrollment in the future.
So, what can be done?