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.
Finding the Right Information
According to an article in The New York Times, the founders of Iodine set out to solve the problem of confusing and overwhelming online drug information in 2013. They began combining published clinical research with Google Consumer Surveys in an effort to provide well-rounded information about medicines that include the perspectives of scientists, pharmacists, doctors and patients. When you search for a particular drug on their website, you get an easy-to-read, comprehensive report that includes a summary of how people who have taken the drug felt about it (i.e. Was it worth taking?) and advice from both patients and pharmacists. You also get a summary of the drugs “upsides” and “downsides,” warnings about possible interactions, and report on the average costs based on data gathered from insurance providers. There is even an option that allows you to do a quick side-by-side comparison of other drugs that treat the same condition.
Patients have told us in the past that they would like to see a similar search engine for clinical trials. One where they could quickly get an understanding of the trial and what it required of them, and also see “reviews” of the trial site, staff, etc. from past participants. Iodine’s search engine helps to show us what that might look like.
Recently, Iodine has also developed a couple of apps to serve particular interests: one is a timely effort to help the public distinguish among the multiple, over-the-counter cold and flu medicines available, and the other is designed to help pregnant women decide which medicines are safe for them.
It can be difficult, if not impossible, to serve the needs of people with different conditions and diseases with a one-size-fits all solution. Having the ability to build apps that address the particular needs of different disease communities would be important in making sure we can help connect the right people with the right trial, at the right time.
The Michael J. Fox Foundation’s Fox Trial Finder, for example, has taken a similar approach to building an a clinical trials app based on the needs and interests of people with Parkinson’s Disease. And, Smart Patients set up an online community around their clinical trial search engine to allow patients to help each other find the most relevant information to their particular type and stage of cancer. When developing any online tool or resource, it’s important to think about how you can serve communities who have needs that go beyond “general interest”-oriented solutions.
For those who like to wade through medical journals and scientific articles online to learn more about their conditions and medications, Iodine offers a Medical Translator extension for Google Chrome. With the extension, you can visit any webpage and hover over a medical term to get the layman’s version. Words like “hypertension” get translated to “high blood pressure,” for example.
We tried it out on ClinicalTrials.gov, and it worked really well. It’s a good tool for potential trial volunteers who are trying to make sense of the descriptions they find there. To further apply this thinking to clinical trials, we might consider an app that would highlight some terms that it would be helpful to explain n the context of clinical research, such as Internal Review Board, informed consent, etc.
Simplifying Complex Information
We’ve mentioned the need to simplify information about clinical trials on this blog many times before. When we see what organizations like Iodine can do with complex networks of information, it makes us feel hopeful about what might be around the corner for informed consent documents, trial protocols and results summaries. We’re convinced that better access to information—access not only in the sense of being able to get the information, but also in being able to understand it—can lead to great awareness of clinical research, more participation in clinical trials, and better treatments.