Clinical Trial Recruitment: What’s Patient Empowerment Got to Do with It?
Last week the 50th Annual Drug Information Association (DIA) Conference saw the topic of patient empowerment gain significant traction from just one year ago. In 2013, mentions of patient empowerment using the #DIA2013 hashtag on Twitter totaled 75, or 2% of the overall conversations for the entire meeting. Just one year later, the proportion of #DIA2014 tweets mentioning patient empowerment increased 712%. For those participating in these discussions, the notion of patient empowerment is one of anticipation and hope for the future role of patients in clinical trials. In fact, our client Medidata repeatedly tweeted “Voice of the Patient is the top story. How appropriate for the 50th anniversary.”
It’s also worth noting that although most of the “most-mentioned” accounts at the conference belonged to industry folks, 4 of the top 10 belonged to patient advocates (Patients Like Me, Regina Holliday, Jamie Heywood and Gregg Masters).
So why is patient empowerment so important?
In The Citizen Patient, Dr. Nortin M. Hadler suggests that patients must take responsibility to assure that whatever is being said or offered or done within the healthcare system will really be to their benefit. This is especially important when we consider the sociocultural influences that lead to participation in clinical trials and the importance of multicultural alignment in digital technologies that place patients at the center of research. Patient engagement can range from trial awareness and enrollment to involvement in trial design and active participation in the collection and sharing of personal data. Advocate groups such as Patients Like Me shed light throughout the meeting on the role of patients becoming active partners in health, personalized medicine and the importance of scientifically engaging patients in protocol design.
Evaluating the elements of medical research from the perspective of patients can have a significant impact on patient empowerment and how patient education is conducted during the recruitment phase and throughout the course of the trial. But from our vantage point, this is not about the future. Today, we are collaborating with our clients to bring patients to the center of clinical trials. A patient who has a hand in how the research is designed will be more inclined to trust the process and participate in that research.
Ken Getz explains why participation in clinical research matters in The Gift of Participation, and outlines what clinical participation really means, from the mundane details and logistics to the emotional and altruistic impulses of patients. Getz provides a road map for how patients can be smarter and more informed volunteers who contribute to their trial experience and overall care. We are constantly looking to unravel what clinical trial participation means for individual patients and for groups of patients facing similar challenges. Patient empowerment first starts by listening, and the analytics we conduct by targeted social listening activities offers us and our clients critical insights into the mindset of patient volunteers. We can identify their greatest roadblocks to starting a trial, and better understand the reasons for staying in one for its duration. But patient engagement means more than just listening, it’s about engaging patients directly to collaborate on the development of educational content and digital tools that help patients manage their clinical trial experience.
DIA participants are paying laser-focused attention to patient empowerment. It is the core to our approach as we work to disrupt the status quo in clinical trial recruitment. Diane Weiser, Healthcare Leader at W2O, best describes the process, “Social listening gives us the ability to continuously monitor patient attitudes and behaviors. That understanding of the patient’s needs informs our content and engagement strategies – and ultimately enables faster enrollment and stronger engagement in the right clinical trials.” When we start with what the patient has to tell us, we can incorporate those critical insights and motivators into content that is truly powerful and drives action.