The U.S. government’s initiative to improve patient access to healthcare data is trying to get the attention of patients, providers and innovators by crowdsourcing ideas and urging people to steal its software coding.
Like many in the healthcare sector, Rashad Abdul-Salaam is frustrated with the slow progress toward enabling patient data to be easily shared.
So Abdul-Salaam, a hospital technician by day and software developer by night, came up with his own solution — an automated registration form for doctor’s offices.
Borrowing a concept from social media, where many sites and apps allow users to login using their Facebook IDs, he developed HappyHealth. The “smart” personal health record stores basic health information that can be accessed whenever a patient registers at a doctor’s office.
“Everyday we all login and authenticate with new apps using Facebook and Twitter — why not have the same for our health data, yet more securely?” Abdul-Salaam explains.
He submitted his innovation for a competition held in June by the U.S. Department of Health and Human Services (HHS) to support the development of technologies giving patients access to their electronic health data. While HappyHealth didn’t emerge as the favorite in the crowdsourcing challenge, Abdul-Salaam says the government’s Blue Button initiative is an important step toward seamless, secure patient data sharing.
Steal this Button
Blue Button was launched in 2010 by the Department of Veterans Affairs as a way for veterans to access a digital version of their health record. But the program has evolved rapidly from the original downloadable text document to a set of standards that would enable patients to transmit and automatically update their information.
Last year, the HHS’s Office of the National Coordinator for Health IT (ONC) took Blue Button nationwide, and access has expanded to include Medicare and Medicaid beneficiaries, the Department of Defense, and major health plans such as United Healthcare and Aetna. Now a Blue Button Plus initiative is working with software developers, as well as data holders and providers, to spur development of new data-sharing programs and apps.
The aim is to get healthcare innovators to “borrow or steal or take, remix, and adapt on these ideas,” Ryan Panchadsaram, a senior advisor to the U.S. Chief Technology Officer at the White House who is working with the ONC on Blue Button Plus, said at the recent TEDMED confab.
Engaging Patients and Providers
This month’s Blue Button Co-Design Challenge was part of that outreach effort. The initial crowdsourcing competition let the public weigh in on ideas for improving access to data, and the winning submission was for an app that would link people’s medical devices to their data. Another challenge will now be held for developers to create apps out of some of the ideas.
“The ultimate goal is power to the patient, and a patient’s right to access and use their data as they see fit,” Dr. Rebecca Mitchell Coelius, the medical officer and chief strategist for innovation in ONC’s Division of Science and Innovation, told HealthBiz Decoded.
In addition to the technological hurdles, a “massive cultural shift” must also take place among providers and electronic health record vendors before data accessibility can become a widespread reality, she said.
“My hope is that the future of health IT is in flexible platforms for customization and rapid experimentation where people compete around how they expose and help us interact with our data,” said Mitchell Coelius. That shift is happening, she says, but it won’t take hold until “providers speak with their pocketbook” and patients vote with their feet by seeking out providers that make data easy to access and share.
Repositories of patient data must also come onboard, which is why she highlighted a couple of organizations that are supporting the challenge by opening up their systems. The New York eHealth Collaborative (NYeC), a non-profit helping to create a statewide health information exchange, and MedXCom, a Web-based platform based in New Jersey that allows doctors and patients to communicate and share data, both plan to integrate their systems with Blue Button this year.
“We believe patients should be able to easily access their own health records, and we are looking forward to seeing the innovation that stems from this challenge,” said Alexandra Cohen, product line manager at the NYeC, which is building a patient portal to the state’s information exchange. Inspiring more patient engagement should improve both care and costs in the healthcare system, she said.
MedXCom, which was created by a group of doctors in 2010 who wanted to improve communication with patients, is going one step further by allowing people in its system to vet any data about them on Blue Button to ensure its accuracy.
Dr. Michael Jay Nusbaum, the organization’s founder, said he hopes other healthcare players will follow suit with two-way integration to help develop a national exchange of information.
“I think that ultimately what’s going to happen is the more stakeholders that take part in Blue Button Plus, the more data that will come in the system, the better healthcare delivery will be,” he said.