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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.
Imagine for a moment you are a patient considering clinical trial participation. Or perhaps you really are considering clinical trial participation (good for you)! Either way, let’s say you want to understand more about informed consent in clinical trials. If you are like most patients today, you’ll look to a search engine for answers. So go ahead and do that. Head to your favorite search engine and type “informed consent clinical trials.” I’ll wait right here for you to return.
What did you find in the search results?
Here is what we noticed. First, patients have to filter through a lot of information to find what they need. They might find regulatory documents intended for research professionals mixed in with introductory content about informed consent. Second, the introductory content available is primarily static text. This static text is helpful, but it’s not as rich or engaging as it would be if accompanied by visual or interactive media. In short, it’s not easy for patients to educate themselves about informed consent in clinical trials.
Click the image to view the interactive infographic.
Our most rare or unique qualities can often be our greatest strengths, but when it comes to disease, rarity is a tremendous challenge. A rare disease, also known as an orphan disease, is any disease that affects a small percentage of people. In the United States, a disease is considered rare if it affects fewer than 200,000 people at any given time. According to the National Institutes of Health (NIH), there are more than 6,800 rare diseases. Though each of these diseases are rare, having a rare disease of some sort is not. Approximately 30 million Americans, or almost one in every 10 people, suffer from a rare disease.
Living With a Rare Disease
The numbers cited above are interesting, but they don’t tell the whole story. The rest of the story relates to the daily struggles of rare disease patients and their support networks. Rare disease symptoms vary even among patients suffering from the same disease. This symptom variability, combined with lack of scientific understanding and awareness, can lead to delayed diagnosis and difficulty accessing treatment. Patient quality of life is severely affected by the “loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”
According to the Union for International Cancer Control (UICC), 8.2 million people die from cancer worldwide each year. And that number is set to rise. To address the cancer epidemic, the UICC organizes World Cancer Day on February 4 of each year. The day was created “to raise awareness about the disease and to develop practical strategies to address the cancer burden.”
The 2015 World Cancer Day tagline is “Not Beyond Us,” which is intended to highlight that solutions to cancer care are within reach. Four key areas of focus support this theme. For each of the four areas, UICC defines targets to achieve by the year 2025 and the challenge to achieving these targets. UICC also describes how we can overcome the challenge to meeting their targets for each focus area. Learn more about each of the focus areas here:
Click to view U.S map illustrating cancer incidence and locations of enrolling cancer clinical trials.