ePatients—patients who are well-informed and empowered by digital technology and see themselves as equal partners with their doctors and healthcare providers—are on their way to becoming more the norm than the exception. For example, according to a recent Pew Research study, 72 percent of Internet users said they had looked up health information in the past year.
Another often-quoted statistic about the current state of clinical trials tells us that only 16 percent of cancer patients surveyed are aware that clinical trials are an option. This could indicate that we are missing opportunities to increase awareness about clinical trials through digital technology and online resources. In a time where 30 percent of trials never get off the ground because they fail to enroll enough patients, we can't afford to miss these opportunities any longer. Bringing information about clinical trials to ePatients is important in expanding healthcare options and getting better treatments to the public faster.
We intend to learn more about what ePatients need and want from their connected, digital experience to improve clinical research. Here are a few things we're observing - and working on - to help bring clinical trials to the ePatient.
Clinical Trial Matching Services
A third of recently married couples met online through matching services like match.com, eHarmony and many more. As we consider what's important in life, it's clear that health is in the same ballpark as relationships. We're seeing more and more clinical trial matching services emerge online as options for patients to find, understand and match to clinical trials as part of their overall healthcare options.
Since we posted a list of online clinical trial matching services back in August, the field has grown and expanded. More companies are stepping up to offer a wider variety of options that have the potential to reach an even wider and more diverse population of patients.
Fundamental to any matching service - whether it's focused on love or health - is creating a profile to match with. That's why we're working with Novartis and Pfizer to create machine-readable, patient-friendly Target Profiles for clinical trials. We'll leverage information from ClinicalTrials.gov, bring forward the most important inclusion/exclusion criteria, and augment it with other information designed to help patients match to clinical trials.
Paul Ivsin, in his guest post on the Partnerships in Clinical Trials website said that he expects to see more clinical trial matching services pop up in 2014 and 2015. He then added:
"One critical area of improvement will be in patient accessibility: many listings still carry over too much of the opacity of their original ClinicalTrials.gov entries, potentially limiting patient comprehension."
Target Profiles are squarely focused on addressing the above problem, and will be freely available through the open Lilly COI API. These clinical trial Target Profiles can be "matched" against patients' profiles, which can be expressed in many ways including Blue Button+ electronic health records. We hope our effort will help stimulate an open marketplace supporting clinical trial matching, and ultimately help bring the right clinical trial options to ePatients.
Online Communities and Social Media
In addition to matching patients to a specific trial, there's great opportunity for resources that increase general clinical trial awareness among ePatients. Social media and online community building strategies are great ways to get the word out about clinical research and help answer patient questions.
According to the Tufts CSDD Impact Report released earlier this year, "social media is being used for patient recruitment on an estimated 11 percent of all trials" (Page 2). This number seems small when considering the large percentage of adult internet users who use social media sites.
There are many different ways that social media sites could be used to improve clinical trial awareness and recruitment. One strategy that seems promising is the use of social media sites to gather feedback from patients about what would make clinical trials appealing to them. In the Tufts CSDD Impact Report survey of patients, 22 of 27 said that sponsor companies should use social media to solicit feedback on protocol procedures and scheduling (Page 3). This seems to indicate that patients want to help improve the overall success of clinical trials. They need for pharma and researchers to be where they are, and ready to listen.
What if, for example, a sponsor or CRO offered a Twitter hashtag for a specific trial? At the start, they could solicit feedback about certain aspects of the trial design that are most relevant to a patient's ability to participate, and adjust as needed. They then could continue to use the hashtag to reach out to larger numbers of patients who may be eligible for the trial, and allow participants to share their experiences in a way that would not compromise the results. The hashtag could be used to offer reminders about why it's important for patients to be careful about what they share about a trial, and point to guidelines like those found on CISCRP's "Smart Talking About Clinical Studies" page.
Approaching Online Communities
As Rahlyn Gossen of Rebar Interactive points out in her blog post "The Social Media for Secret for Pharma" our main focus when approaching a community should be listening and learning, not recruiting and pushing information about a trial. Perhaps patient advocate Regina Holliday put it best, during last year's Patients at the Center of Clinical Trials Workshop:
It's important to reach out in a way that's considerate and respectful of what the members of the community actually want and need. And, it's even more important, Rahlynn says to "conduct yourself in a manner that radically disrupts stereotypes about the [pharma] industry." In other words, be open, be transparent, and leave any self-promotional agendas behind.
Doximity, is an example of a social media property and online community that could be engaged for clinical trial awareness and recruitment. Doximity is a social network built exclusively for physicians. When we were researching our latest inforgraphic, we learned that 52 percent patients say that they would prefer to receive clinical trial information from their primary physicians; whereas only 20 percent actually do. So, if you are a physician and princial investigator of a clinical trial, asking for insights on how to increase awareness about clinical research from your peers on Doximity might be a important part of your communication strategy. Equipping doctors with information about clinical trials is one more way to bring trials to patients, where they are, instead of the other way around.
Fail Fast and Fail Often?
No two patients are exactly alike, no two online communities are exactly alike, and no two social networks or trial matching services are exactly alike. That's why it's important to experiment with many different approaches for connecting with ePatients. Though there will surely be some missteps along the way, we'll learn important lessons in how we can best meet the needs of ePatients to help drive forward much-needed new treatment options.
We know we've barely scratched the surface of possible ways to bring clinical trials to the ePatient in this post. Tell us what we've missed in the comments below. What do you think are some of the best way to reach patients online about clinical trials?