Setting new standards in information exchange for the pharmaceutical and biotech industry
Themes and Thoughts from the Disruptive Innovations Conference by Brendan Kelleher, karmadata
September 17, 2012
Sean and I recently attended the 2nd Annual Disruptive Innovations to Advance Clinical Trials for Pharma, Biologics, & Devices (DPharm) in Boston. We had a really great time and learned a ton.
Here are a few themes that really stood out for me:
An increasing momentum for collaboration among pharma:
Tom Krohn of Eli Lilly kicked off the conference by bluntly telling us why we need to change the current industry paradigm: because it’s completely unsustainable. Yikes. While radical changes in this industry might feel like trying to pull a 180 in the Titanic, progress is being made.
Elise Felicione of Janssen detailed a cross-pharma investigator databank that is advancing. Janssen, Merck, and Lilly are collaborating on a project that combines their investigator lists into a database hosted by DrugDev.org (we want to be a part of this effort!). While the project has only reached exploratory stages to this point, they have gotten past some very difficult hurdles involving lawyers, red tape, and the like. Did you know about all of the redundant tasks that take place between sponsor and investigator, like how investigators have to go through Good Clinical Practice training with each sponsor that they work with? As a data geek residing on the peripheries of the industry, I did not. Reducing these “redundant burdens” is a no-brainer, but implementing is no easy task. It will take indomitable leaders to overcome the resistance to sharing competitive intelligence, but luckily it appears that such leaders are in place.
How about this for a radical idea for collaboration: Dr. Chas Bountra delivered the most compelling and passionate talk of the conference in which he detailed his vision for stripping intellectual property and competition from drug discovery prior to Phase IIa. Rather than working in independent silos and testing the same failing targets, failures would be shared and only novel targets that show promise would be tested. After Phase IIa, the IND would go up for auction among pharma. Don’t think that this is even remotely possible? Think again. Dr. Bountra has both public and private funding. Judging by his talk, my guess is that he yelled at pharma execs until they caved (I would have caved too).
Rethink the role of the patient in clinical trials:
Patients need to take an active role in the drug development process. The question is how do we engage them? Joseph Kim of Shire spoke about “kickass” mobile apps designed for patients with a particular disease. Apps need to be useful, informative, and draw the user in on a regular basis (basically the definition of kickass right?). What about an app that is tied into something that people already use everyday like Facebook or Twitter? The clinical trial world is a foreign place to most patients, with a language they don’t speak. Familiarizing patients with clinical trial lingo is crucial to ultimately enrolling them.
Patients, especially those with rare or deadly diseases, face considerable burdens in order to participate in clinical trials. It’s not uncommon for them to have to travel hours each way to the clinical site, and this at a time when they are sick and tired. How can we improve the patient experience in clinical trials? Nicki Norris of Symphony Clinical Research spoke about bringing the trial to the patient with in-home visits. Reducing site visits, even by a small percentage, carries a great impact for the patient. Patients need to be the focus of trials, not temporary employees of the sponsor.
This got me thinking that patient focused clinical trials make sense for the patient and also make business sense for the sponsor. A greater focus on patient preferences and habits should be beneficial for recruitment and retention rates.
Pharma are not inherently evil, money-grubbing entities:
No, really, I’m serious.
We met and heard from a glutton of bright, innovative, and compassionate people. These people do want to collaborate, do want to share, do want to innovate, and do set the patient as the focus of their efforts. Jeri Burtchell, a patient advocate battling MS, mentioned how, for her, these (the conference attendees) are the faces of pharma, and that these are her heroes. Wow. Imagine if all people/patients felt this way. If there was a better way for pharma to have patient-facing initiatives, then pharma could gather invaluable feedback from patients, and patients could see the people side of pharma instead of just the SEC filing side.
How can we fit into this puzzle?
It was easy to feel incompetent at this conference. I can’t even remember the last time I identified a novel drug target or established a new biomarker. But I think we can still contribute.
We provide a vehicle for collaboration among consumers of data. What if people shared data visualizations the way they share videos with screaming sheep on Facebook? And what about all this open data that’s out there on clinical trials, drugs, and diseases? We standardize that data and want to get it in the hands of app developers, industry experts, etc, and truly unlock its potential.
The open data piece may be a small piece of this large puzzle, but we want to lead it.