In this blog PCRI presents an interview from our contributing partner, Prostatepedia.
Mr. Jeff Lee, a mobile technology veteran, develops clinical trial apps for most major pharmaceutical companies. Prostatepedia spoke with him about how mobile technology streamlines the clinical trial experience for both patients and researchers alike. Here is the interview:
How did you come to develop healthcare apps?
Mr. Jeff Lee: I have been in the mobile field for 20 years. For the first ten years or so, I provided mobile technology solutions to non-health industries. I did a lot of random things: like helping Fox and AT&T do text message voting for American Idol contestants and other things for HBO, Disney, Discovery, National Geographic, among others. I helped the Obama campaign use mobile technology to engage people. We used mobile technology to drive people to vote; drive them to stores; drive them to tune in. In 2010, that company sold and I wanted to start something of my own. I was in the healthcare system quite a bit at that point. Within a 30-day period, both my parents passed away from cancer and my son was born. My dad had prostate cancer that metastasized. First, he had had a fall and an ischemia event. He had all kinds of problems, but prostate cancer was the kicker. I was very interested in health. I started thinking about the main areas of mobile technology. What I saw in my first decade in the industry was how powerful mobile technology could be at motivating people to take action: to adopt certain behaviors and to create connections between an organization and an individual. A good friend of mine is a longstanding pharmaceutical guy with a PhD in Pharmacology. We got talking about how we could use mobile technologies in the health arena.
Like a lot of other people, I started off thinking about the obvious actors: payers, providers, patients, and employers. Back then, mobile health was a burgeoning field and seemed a bit crowded, so we started thinking about clinical research and pharmaceutical companies. We thought this was an untapped opportunity and that we could do well by doing good. A patient in a clinical research trial is generally there because they’re unserved or underserved by existing therapies. They’ve been moved to enter a clinical trial, which generally raises stress and anxiety. Now, the patient is in a study with clinicians who aren’t familiar, who are serving as researchers. The patient takes a medication or has a treatment that is considered exploratory or experimental. There are a lot of activities a patient has to do in order to provide data back to the study and at the end of all that, they can be in very fragile emotional and physical states. But a patient’s activity in a study doesn’t just impact him—it impacts science. It impacts everybody with that condition. If you blow off your therapy in your own personal treatment, you only hurt yourself. But if you don’t adhere to a study protocol, you’re hurting everybody who could benefit from the science learned in that study. We thought mobile technology could help improve the clinical trial experience.
How are mobile apps used in clinical trials?
Mr. Lee: We’ve developed a mobile platform called Trial Guide that works on any study. In an app store, you see ESPN, CNN, Facebook, Snapchat, and Instagram apps. Those are apps that do one thing. Inside of each of those apps are configurations that are specific to you. What shows up on your Facebook wall? The Facebook app morphs once you log in. ESPN morphs to show you your favorite teams and the score alerts you want to receive. We’ve taken that same theme and applied it to clinical trials. We’ve developed an app to support classic areas of need in clinical trials that are very easily adapted to any kind of study. One section of the app deals with things patients needs to know about their schedule of activities for a study. Not just when their next visit is, but what will be happening during the visit? How long am I going to be there? Do I need to fast? Do I bring my meds? Should I bring a book? Are there blood draws? Are there other things I need to prepare for? There is also a diary section so that we can collect information about their response to medications. A section deals with reference information. Any information you would normally get on paper can be put into the app. A contact section makes it easy for patients to contact study researchers. All of these sections give patients support and guidance to proceed through the study. Every app is unique to every patient in a study. Patients enter an activation code and then the app initializes and sets up for their trial, their research site, their case, and where they are in the study. This one-size-fits-all app has been used on hundreds of protocols, including prostate cancer studies.Oncology patients are more intrinsically motivated than a healthy volunteer, but they have lengthy visits and have to better understand more information. (My eighth visit will be three times as long my sixth visit so how do I plan for it? I’m going to be really fatigued after my fourth visit, so I may need to take extra precautions. Having access to all that information is really particularly important in oncology studies, because those studies are generally more complicated.
Another challenge we see in oncology studies is that patients have a much greater sense of urgency about participating in a study. This may be a therapy of last resort. Sometimes this means that patients are less likely to report negative symptoms or side effects because they’re afraid that if they complain they may be dropped from the study. They gut it out and do everything they can to stay in the study. Unfortunately, in many cases this means mild side effects that could be treated go un-discussed. The side effects become more severe and become a disqualifying side effect. With oncology apps, we’re trying to communicate to patients which symptoms should be reported. We want to help patients be proactive and confident in discussing topics, knowing that side effects can be managed and that they’re better off saying something than grinning-and-bearing it.
Are patients are more likely to report side effects through an app?
Mr. Lee: There is a ton of evidence in the mobile health arena that tells us that patients are much more likely to communicate health issues, particularly stigmatized health issues, in a digital fashion. For example, they’re more likely to tell you their real weight than if they were talking over the phone. But I don’t know that we’ve got evidence that suggests they’re more likely to report these issues through an app. Oncology clinical care is so high-touch and high stake. We’re less focused on having patients communicate symptoms through a diary and more focused on encouraging them to have a conversation with their doctor.
Is the app only available in the context of a clinical trial?
Mr. Lee: Anybody can download the app, but it’s not useful unless you have an activation code. The activation code is provided by the study.
Is there anything else you want to add that you think patients should know about clinical trial apps?
Mr. Lee: I had a lot of eye-opening moments when I came into this space six and a half years ago. One of them was the tremendous disconnect between clinical studies and patients. Only three percent of people who could benefit from clinical trials actually enroll. I don’t think many patients know how many sincerely passionate researchers are aching to find patients for their trials. There is so much energy and intense motivation going into creating these studies, making them run well, and helping create better patient experiences. Sometimes a clinical trial can be a viable care option. If you’re underinsured or have limited medical coverage access, a clinical trial can provide essential care. Hopefully, more and more people will recognize clinical trials as a realistic alternative.
Prostatepedia, a division of Rivanna Health Publications, has a single mission: to help leading prostate cancer researchers explain their work and its implications to prostate cancer patients, activists, and health care providers. Formerly known as Prostate Forum, Prostatepedia, their monthly periodical, features informal conversations with leading experts.