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.
Our efforts are focused on facilitating the exchange of information about clinical trials in ways that allow patients to make informed decisions. Our hope is that it will allow patients who are interested in making clinical research part of their health care regimen to easily and seamlessly use their their health data to match information available in ClinicalTrials.gov.
One example is the Lilly COI API. (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.) We’ve recently added target profiles to our API, which are—in the most basic sense—consistent, streamlined, and simplified digital representations of clinical trials eligibility criteria. These profiles are designed to make it easier to support matching with BlueButton data, meaning that developers can build apps that allow patients to seamlessly match their electronic health information to open clinical trials.
But, the benefits could go beyond helping patients match to trials. Once a patient found a trial he or she was interested in, you could imagine a world where he could submit the information to the trial’s coordinators through a secure web portal with the click of a mouse. The staff could then double check the record as a deep pre-screening for the trial. This could help him avoid traveling to the trial site, only to find that he doesn’t qualify. If he does qualify, it could save him time spent recounting medical history with the study staff.
All in all, allowing people to conveniently access their health information through technology brings additional healthcare choice and decision making to where it belongs, with the patient. As far as research is concerned, it can lead to increased trust and more collaborations among patients, health care providers and researchers, which in turn leads to more patient-centric study designs and better treatments for us all.
What are your ideas on how electronic medical records can be incoporated into clinical trials? Comment below, or send us a tweet.