Recently, NPR featured a story about an experimental program called OpenNotes, which gives people access to the notes doctors write about them. Though there was some trepidation on the part of doctors, the program turned out to be tremendously successful. For example, 80 percent of patients reported having a better understanding of their health, and two-thirds said they were more disciplined about taking their prescribed medications.
Advocates like ePatient Dave, Regina Holliday and many others have been leading the charge to demand patient access to their personal health information across all medical specialities and organizations. Healthcare is not a one-size-fits-all proposition. Assuring patients have access to their information is fundamental to support making the best, most-informed, personal healthcare choices. The success of OpenNotes makes us feel encouraged about the possibility that making it easier for patients to access their medical information will also make it easier for them to connect to clinical research studies. And, there’s also a lot of promise in initiatives like Blue Button, which allows people to access and download their health records online.
“On Target” by ViZZZual.com is licensed under CC-BY-2.0
Last November, Tom Krohn announced that we would begin collaborating with Novartis and Pfizer to build a consistent framework for clinical trial eligibility criteria by developing target profiles and implementing them in our API. Our shared mission was to make it easier for people to find clinical trials that are right for them or their loved ones.
(Editor’s Note: In 2015, leadership of the LCOI-API was transitioned to TrialReach. You can learn more about their continuing work in innovation in clinical trial matching at TrialReach.com.)
Not long after that announcement, I was thrilled to be given the task of helping to lead such an important project. And, right now, I’m excited to share with you that some great strides have been made. In the last six months we’ve consulted with our partners from Pfizer and Novartis, along with other outside experts, to determine the best possibilities for presenting clinical trial eligibility criteria in a way that’s clear and consistent. From these discussions, we were able to form our first target profiles, which were made available to the public in late July through a major update to the LCOI-API. And, we’ve only just begun…
hGraph: patient + clinician looking together by Kelly Mansfield is licensed under CC by 2.0
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.
“I would like for researchers to define a minimum amount of information that all participants in all clinical trials will get, and for that minimum to be consistent across all organizations.”
–Lane Rasberry, Clinical Trial Participant and Wikipedian
On November 12, along with representatives from Novartis and Pfizer,I announced a collaboration at the Data to Knowledge to Action: Building New Partnerships technology conference in Washington, D.C. Our objective as a group is to build a consistent framework for clinical trial information to make it easier for patients and their families to find clinical trials that might be right for them.
By collaborating in this pre-competitive space, we hope to enable patient communities and patient-centric software companies to develop applications that help people match themselves with a study’s target profile across a variety of patient populations. We also hope to not only serve individuals looking for clinical trials, but to enroll trials faster and more efficiently—ultimately speeding drug development.