Two weeks ago, I was pleased to have the opportunity to attend the 50th Annual Drug Information Association (DIA) Annual Meeting. The DIA meeting brings together more than 7,000 life sciences professionals from all over the world. This year, the event celebrated its 50 year anniversary.
Like Partnerships in Clinical Trials and Disruptive Innovations in Pharma, the DIA conference, for the most part, is conducted by industry professionals for industry professionals. Its focus is primarily on drug development, regulation and research. But, in the last few years, the center of the conference, like the center of the industry, is being pulled toward incorporating more of the patient’s perspective to help improve research and drug development.
The inclusion of a keynote address by Jamie Heywood of Patients Like Me, and of The Walking Gallery, a patient empowerment movement founded by Regina Holliday, were indicators of the changing tide. It was wonderful to see that among top industry professionals, there is no longer a question of whether there’s a need to engage patients in discussions around drug development—it’s now more a question of “how.”
How do we meet patients where they are and provide the right channels for gathering feedback from patients? And what are the best ways to put the information we share about our clinical trials in the patient’s context, instead of only in the researcher context?
How Patient Engagement Is Being Explored
As more patients become engaged in the healthcare process, a litany of new options is becoming available to help industry and patients engage more in clinical drug development. Here are just a few patient-engagement related tools and initiatives that were discussed at this year’s meeting:
As we mentioned earlier, this year’s opening keynote speaker at the conference was Jamie Heywood Co-Founder and Chairman of Patients Like Me. Jamie strongly believes that “thinking of patients as subjects is a thing of the past.” Patients Like Me and other communities are intent on participating in the future of drug development with knowledge, insight and innovation driven from and by patients.
Patient Advocacy Groups
Many discussions within sessions at DIA also focused on the importance of patient advocacy groups. These more formalized patient organizations play a critical role in the development of new treatments. They often have strong ties with their members and are able to effectively gather feedback from patients on clinical trial protocol design, site selection, and more. Through their channels, they also have the ability to share information with patients and help connect them with the right studies. More companies and research organizations are forming partnerships with advocacy groups, in order to help them better understand and integrate patients’ needs into their studies.
The Walking Gallery
Regina Holliday’s Walking Gallery took center stage at this year’s conference. We were glad to see that it was not at all reduced to a mere symbol of patient engagement. A focus
on patients’ experiences and stories and the value of patient input was woven into many of the sessions throughout the conference.
Also, we were pleased to see our own Tom Krohn join me as a member of the Walking Gallery with his jacket, titled “Staying on the Path.” If you see Tom or me wearing our jackets at your next conference, please feel free to ask us to tell you the stories behind them!
Tom also served on a panel called “Patient Registries: Designing Implementing and Leveraging to Accelerate Clinical Trials,” along with Leanne Larson from PAREXEL and MJ Schmidt from Engage Health, Inc. Patient registries are places where health care information about patients with a specific disease or condition can be warehoused. Data from registries can help researchers gain a greater understanding the disease and develop new treatments. Patient advocacy groups can use them to reach out to patients and provide support.
On the same day that DIA was conducting a panel on social media guidelines, FDA released its latest proposed guidelines. A challenge industry faces related to engaging in social media is uncertainty around how to assure ethical responsibility and compliance in new digital, social interactions around clinical research and marketed drugs. We’re glad to see FDA providing more and more clarification on these issues, and glad to see industry sharing ideas on how to best serve patients through social media.
A New Era in Patient Engagement
Earlier this week, I participated in an Xtalks eCongress panel discussion on optimizing patient participation in clinical trials. During that discussion my fellow panelist Joseph Kim pointed out that all revolutions start with discussion. And, that the next step is take it from discussion to action. This seems to be the trajectory that the pharma industry is following. Discussions about patient engagement have been steadily increasing for years now. In fact, the discussions around patient engagement increased dramatically at DIA this year. Dorcas Lind pointed out that the number of tweets about patient engagement under the #DIA2014 hashtag increased by 712 percent over last year. It seems that those discussions are now starting to move more into action, though we still have a lot to learn and a long way to go.