Health Data Sharing Becoming More Attainable but Also More Complex

The health information landscape is fraught with a number of challenges, particularly around data sharing. Insufficient software, conflicting state laws and multiple information exchanges have led to an increasingly complex system. With more and more data, experts warn, the system will only become more complicated.

“We’re moving toward a danger zone — a tsunami of information,” said John Mattison, chief medical information officer for Kaiser Permanente’s Southern California division. “We have an avalanche of data available already, and we can assume there will be 10 times more in the next five years.”

Mattison was one of about 150 health IT experts who met in Santa Rosa last month to discuss ongoing efforts and emerging challenges in the field. Attendees at the eighth annual Redwood MedNet conference made a number of recommendations, including:

  • Building strong partnerships among health information exchanges;
  • Creating state policies that can adapt to nationwide efforts;
  • Fostering awareness and attentiveness among patients so they can be active participants in data collection; and
  • Updating technology.

“A modern health care system is a complex, adaptive system,” said Dean Sittig, professor at the School of Biomedical Informatics at the University of Texas. “It’s non-linear and dynamic; it does not reach a steady state but is composed of independent agents whose behavior is based on a lot of variables.”

Meeting the unique needs of each patient, provider and facility is no small feat, considering the security and privacy risks. Business partnerships, policies and infrastructure in the next few years must be developed with the utmost attention to detail.

“Don’t mistake a clear view for a short distance,” Mattison said. “We have a lot of work to do.”

Presenters at the conference identified what is working and what is not and charted a course for California over the next decade. Reports from the Office of the National Coordinator for Health IT laid out models for nationwide connectivity and state agencies presented California-specific plans. Notably, the California Association of Health Information Exchanges celebrated the approval of a landmark document — CalDURSA — that creates a framework for interoperability between state exchanges in California.

Cooperative Planning Needed

John Halamka, a physician and CIO at Beth Israel Deaconess Medical Center in Boston, told conference attendees cooperative planning is needed to make health exchange work.

Halamka envisions a future in which HIEs operate with open, exchangeable rules within cloud-based storage. HIEs would agree to allow all parties to see the workflow on a particular patient’s care.

“We need closed-loop tracking,” Halamka said. “Say I order a test, it comes back abnormal, the next doctor doesn’t see it, the patient suffers and the family sues.”

The variety and number of HIEs create problems because not all of them have agreements to act as pathways to move data. Blocks emerge among agencies, delaying information exchange and hindering patient care. Highly usable data, such as a list of test results or disease history, may not be available in a timely manner, and may be stored in a way that is so difficult to retrieve that patients end up receiving care that is redundant, inadequate or unnecessary.

Trust and security are key issues, experts said.

“HIE is not one size fits all,” Halamka said. “We have all these different devices. It’s point-to-point, and it’s painful. If we build these in by third-party trust pathways we can connect, but we live in an era of cyber terrorism.”

Halamka suggested bringing together an advisory committee of stakeholders — doctors, IT experts, vendors and government officials — who could devise a governance of electronic health record monitoring and storage.

Halamka also suggested that capturing data electronically right away — no scanning of hand-written documents — would speed up patient access to current records.

“We want to make sure data analytics transcend patients. Patient information captured can be used to reduce health disparities,” Halamka said.

State-by-state policy will be a critical factor on this front, Halamka said. While patients could have the option to not share data with certain agencies, building the technology that would allow sending data to public health registries, school nurses and national repositories would create a much more comprehensive picture of patient health.

One of the biggest — and most exciting — areas for improvement is having patients be an active participant in data sharing, experts said. Patients wearing monitoring devices and establishing their own care coordination team of family members who would be privy to health information could make health care much more efficient.

Taking smartphone applications seriously is a major way this could be accomplished, Halamka said. While people may have downloaded apps tracking physical activity, sleep and medication, that information is not easily shared or used. If such information became part of a patient’s EHR, doctors and family members could better tailor the patient’s care.

“You could become a sort of air-traffic controller for your own health,” Halamka said.

The Future: Letting Machines Pick Up the Slack

As data storage and use evolves and improves, technology will move faster, Kaiser’s Mattison said.

“We live in the sci-fi generation. We already can’t possibly manage the data we have today. We have to develop filters to escalate from machine to human, and we have to understand the limitations of the human brain,” Mattison said.

Mattison pointed to innovative technologies that would transmit data among doctor, patient and databases to deliver the quickest, most personalized level of care, as well as monitor ongoing trends within a community.

“Such things as nanobots (tiny, scanning robots) can detect cancers, look for recurrences and already know what information the doctor is looking for,” he said.

Other innovations include point-of-care testing, in which certain illnesses or conditions can be detected almost immediately, as well as personalized medicine — devising drugs based a patient’s specific genomic profile.

Mattison said patients could restore wellness through mindfulness, thanks to sophisticated data-generation and sharing. Devices worn by patients could be used to capture and react to data, Mattison said. By using accelerometers, glucose and cortisol monitors and other sensors, patients and physicians can cultivate an attentiveness and treatments that will ultimately lead to better health, Mattison said.

“How do we use modern technology to restore ancient wisdom?” Mattison said. “This is how the digital world will shape the future of human evolution.”

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