Information is Power – The Promise and Problems of Patient Access to Medical Records

“I asked if it could be videotaped.” Steven Keating wasn’t talking about his upcoming graduation or his family’s reaction to an odd Christmas present. He wanted to record his very own brain surgery – a grueling 10-hour “awake” surgery to remove a tumor that occupied nearly 10 percent of his brain. Curious by nature, Steven’s battle with cancer was an intellectual challenge as well as a physical one, and that video was among the 200 gigabytes of data that he amassed over the course of his treatment.

It was shortly after this surgery that an Agios scientist forwarded me a different video. In it, Steven was sharing his story for the first time, and I was captivated. A few emails and cups of coffee later, I welcomed him to an all company meeting to share his story with the Agios team. Steven, whose tumor has a mutation that we are targeting with one of our programs, both represents the type of patient we could be helping someday and shares our passion for information.

When I was in clinical practice full-time, there was a standard assumption among physicians that when a patient asked for their medical records, it meant they wanted a new doctor or had serious concerns about their care. Times have changed though, and Steven is part of a new generation of patients who want more than an exam room chat. Today’s culture of social media sharing and constant online information access is impacting health care, breaking down stigmas and empowering patients to ask for, share and use their own medical data. The challenges – as Steven would learn – lie in a healthcare system that is slow to change and isn’t designed for to include the patient in the information-sharing process.

When Steven was diagnosed, he was a doctoral student studying mechanical engineering at MIT and working as a researcher in the Media Lab there. Digging through data to solve complex problems was Steven’s specialty. The tennis ball-sized tumor in his brain was a different kind of problem, but one he planned to attack with the same weapon – data. He asked for everything, and though his doctors were incredibly supportive, Steven hit surprising roadblocks. Some data took weeks to get access; others arrived in a digital format that wasn’t accessible by any standard program. As he told the New York Times, “The person with the least access to data in the system is the patient. You can get it, but the burden is always on the patient. And it is scattered across many different silos of patient data.”

The average person likely doesn’t want a video of their surgery or raw genome sequencing data, but there is tremendous value in accessing their most basic medical information – the lab results from a blood test, physician notes, scans from an MRI. Armed with data, patients can play an active role in their healthcare, better understand treatment options and ask their physicians more informed questions. Outside of the hospital, giving patients the ability to share their data with researchers can have significant benefits for understanding diseases and advancing new therapies. Imagine the possibilities if researchers could aggregate molecular and clinical data from large numbers of patients with the same disease. This has the potential to facilitate novel target discovery in ways not possible now.

Steven envisions a world where third-party tools enabled by application program interfaces (APIs) would allow patients to easily access, use and share medical data at their discretion. He believes that one day there will be Google Maps for health, DropBox for health and Facebook for health. We’re not there yet, but for now, Steven said the best place to start is by asking three simple questions: Can I have my data? What can I do with it? How can I share it?

There are several initiatives online and at medical centers across the U.S. focused on making data easier for patients to get and share. OpenNotes is a national initiative to give patients access to the visit notes written by their doctors, nurses or other clinicians (see if your hospital participates in this program here). PatientsLikeMe is a free website where people can share their health data to track their progress, help others and generate information about diseases that can inform research efforts. For these and other services, privacy is of the upmost importance. Access to data and the ability to share it is always at the discretion of the patient.

Health care practices are slow to change, but efforts like these are mounting thanks to Steven and advocates like him who are speaking out to make an impact. When I spoke to Steven, he said, “The most powerful thing patients can do, which also takes the most effort, is to raise their voice.”