Can Better Patient Experiences Lead To Better Medicines?
By Ed Miseta, Chief Editor, Clinical Leader
Thomas Goetz has spent the last 10 years exploring the power of tapping into patient-generated data as a catalyst for better clinical decision making. His goal has been to show how the patient experience is not just an optional thing to track but a requirement that sponsor companies must understand in today’s information-rich world of medicine. Goetz is the co-founder of Iodine, a digital health company attempting to turn patient experiences into better medicines. The company is combining data and design to help patients locate the best treatments, based on preferences, demographics, and experiences.
“The potential of collecting and making better use of patient-reported data is a concept that was so exciting to me I left my day job as a journalist to devote myself to pursuing the opportunity,” he says. “I started Iodine in 2013 to map the real-world experiences of individuals on medications. I have found in many cases the patient experience maps to what we know and have learned from clinical trials. The alignment is very interesting. But what’s even more fascinating is what you find when looking at the more granular data available today.”
Goetz notes when examining the patient-specific data available today, researchers have seen patterns emerge which could not be seen in the past. For example, there might be patterns around side-effects or symptom relief with different drugs or classes of drugs. That information can be used for what Goetz refers to as “therapeutic optimization” in the clinic, meaning the ability to discern what might be the best drug for a given person.
“Our slogan is ‘We help people find what works,’” says Goetz. “In the normal course of care, finding what works best for patients can be a rather blunt instrument. What we’re trying to do is leverage the patient experience to turn that instrument into a much faster, iterative, and more informed process.”
Provide The Right Incentives
In order to get patients to keep track of their experiences on a medication, they have to be incentivized. Goetz notes the first step should always be getting patients to care about doing it. Unless patients have a real incentive, the effort will not result in a broad base of data.
“We benchmark on clinically validated measures of efficacy,” he says. “We have measures available for use which are free and easily accessible. They were developed by the U.S. Department of Health and Human Services and are known as PROMIS (Patient-Reported Outcomes Measurement Information System). They are clinically validated to measure specific endpoints. Those measures are great, but when you talk to patients about what they want to track, it’s the more human elements that are specific to their condition and experience on the medication. For example, someone with post-partum depression will have different goals than someone with depression caused hereditary factors or a traumatic event. Those human elements can be very informative to researchers.”
One data point that Iodine has been measuring, which has turned out to be incredibly important, is simply asking patients if the medication is “worth it.” They can answer yes, no, or not sure. “It’s a very simple question, but it can give researchers a good indication as to the effectiveness of a medicine,” says Goetz. “It might also help them predict the future results of a trial. If a patient says a medication is working for them, there is a good probability that they will also have a good clinical trial outcome. We can argue over whether that is the result of a placebo effect or self-selection bias, but it’s still a very useful and actionable point of reference for anyone trying to optimize care for patients.”
In gathering the information from patients, Goetz wanted to ensure whatever technology was used would be patient focused and easy to use. First, there is Iodine.com, a website that patients can access and report experiences. Although patients might go to a website to report on an experience once or twice, Goetz notes they will not continue to do so over time. For that reason, there is also an app called Start which most users find easier to use on an ongoing basis.
“I mentioned incentives earlier,” says Goetz. “The incentive for patients to use this technology is in knowing whether or not the medication is working for them. This is important because the real value in mobile technologies is having patients use them over the course of many months. Having an incentive to record the information is what will keep them using it. Patients want to know if a drug is working for them. Not every medicine will work for every patient, and knowing if it is working for you is a great incentive for patients to record their data.”
Goetz would welcome the opportunity to work with pharma, CROs, or sites, but thus far has worked mainly with pharma companies. He has also been speaking to pharma companies about developing patient registries for certain conditions and performing patient recruitment via the platform. The website, for example, receives search activity for various drugs as patients look for a new therapy or hope to switch therapies. “This gives us the opportunity to recruit patients for condition-specific trials,” adds Goetz.
If you would like to hear more about the patient experience, Thomas Goetz will be presenting at the 2016 Disruptive Innovations Conference in Boston. For more information, you can click here.