The open patient movement
Patient advocacy groups lead efforts to make health data flow.

Focal point, not extra noise

Several speakers at the conference focused on how health systems can do a better job of incorporating patient-generated data into clinical care. Amy Abernethy, M.D., Ph.D., is chief medical officer of Flatiron Health, which offers both an oncology-focused EHR and analytics services around oncology data. She said the healthcare industry is used to seeing patient-generated data as a data set that gets appended on to clinical data in some way. “Nobody really knows what to do with it,” said Abernethy, who previously was co-director of both the Duke Center for Learning Health Care and the Duke Cancer Care Research Program.

“Rather than thinking of patient-generated data as appended extra noise, at Duke we spent a lot of time thinking about how we would make it a central focal point. The rest of the story—genomics and EHR data—gets added to the patient voice as the initial backbone. In order to get patient-generated data that we can trust and use, it has to be generated in context, and it has to capture the patient voice in the clinical workflow,” Abernethy said.

Other speakers described efforts to create data registries for specific disease groups or technology platforms to help patients share their data. Jennifer King is director of science & research for the nonprofit Lung Cancer Alliance and co-founder of SHARE For Cures, whose goal is to create a platform to empower individuals to use their data to move research forward.

SHARE For Cures is building the SHARE (System for Health and Research Data Exchange) platform for both accessing and securely sharing individual health data with researchers. Currently in early-stage development and testing, the SHARE system is a database that makes it possible for people to access and combine different data from multiple places, making the data more complete and usable at a low cost.

“We want to build a system where it will be easy with a few clicks to connect medical records and consent to share,” King said. “As a patient and a member of a population with a certain condition, it is not easy to contribute to research. People are often told they are not eligible for clinical trials. Patients feel like they are collecting all this data, and it is sitting on their home computer, not moving research forward. How do we let everyone who wants to contribute do it?”

Patient registry programs

Vanessa Rangel Miller is VP for genetic services for PatientCrossroads, which manages patient registry programs for 300 diseases. She works with registry programs that are created by advocacy organizations. One example is DS-Connect, the Down Syndrome Registry. “Across these registries, we promote systems to openly share data,” Rangel Miller said. “These registries can be used to support all stakeholder needs, including academic or pharmaceutical researchers, payers or regulators who need to understand patient-reported outcomes.”

Earlier this year PatientCrossroads announced that the DuchenneConnect registry, led by Parent Project Muscular Dystrophy (PPMD), would be the first patient report registry to directly integrate electronic health record data via patient portals. EHR integration with the DuchenneConnect registry supports the goal of including EHR data in the patient-powered research networks that are members of the National Patient-Centered Clinical Research Network (PCORnet). DuchenneConnect participates in PCORnet, supported by funds from the Patient-Centered Outcomes Research Institute (PCORI).

The Health Datapalooza has grown so big that this year it even drew an appearance from Vice President Joe Biden, who tied the health data liberation movement to both the cancer research “moonshot” effort he is charged with leading as well as his own son’s battle with cancer. “Today most cancer centers don’t have an easy way or motivation to share data,” he said. “We have to change this.”

Biden welled up when speaking about his son, Beau Biden, who died in 2015 from brain cancer. He spoke about both the current roadblocks to sharing data and the great potential to have significant breakthroughs in cancer research in the next few years.

Biden spoke about the administration’s effort to open up 2,100 Medicare data sets. That effort, he said, is “based on the simple proposition that data and technology can have an incredible impact on saving people’s lives.

We should open up more of the data held by federal government to drive progress.”

He also drew applause when he made a strong argument that access to scientific literature and data that is paid for by public funds must be freely available to the public.

Others expressed the belief that more thought has to be put into designing consent systems that offer patients meaningful choices about how they want to share their data. Speaking during another panel session, John Wilbanks, chief commons officer at Seattle-based Sage Bionetworks, said patient data rights regarding research and consent have to be designed into the architecture of health technology rather than being an afterthought. “If we don’t demand certain baseline patient data rights,” he said, “they will be designed out of systems.”