Eric Dishman, an Intel Corp. health care systems executive who has survived kidney cancer, says difficulties with getting access to his own medical records nearly killed him.
Dishman is one of the witnesses who appeared Wednesday at a patient health data access hearing organized by the Senate Health, Education, Labor and Pensions (HELP) Committee.
Dishman, general manager for health and life sciences at Intel, testified that he lost a chance to participate in a clinical trial eight years ago because he was unable to assemble a complete set of medical records, even after he spent three months trying to do so, and a lawyer spent another three months trying to get the records. He said he has also tried to help other people with cancer get access to opportunities for the best possible care.
“In my advocacy on behalf of cancer records — 1,200 people so far and counting — I still see this happening every week, even with new laws and technologies that should make it possible,” Dishman said, according to a written version of his testimony posted on the committee website.
Recently, he said, a DNA sequencing company helped him get, and share, genetic information that led to a cure for his cancer.
Until the DNA sequencing company provided the easily shared data, “It was simply too hard to collect all of this information on a timely basis so my doctors could determine the best care plan for me,” Dishman said.
Dishman listed four main obstacles keeping patient records out of patients’ hands:
Health care providers are still using the Health Insurance Portability and Accountability Act (HIPAA) health data privacy provisions, and other state and federal privacy laws and regulations, to get out of having to send patients their own data.
Health care providers still lack simple, affordable, standardized patient data sharing systems that can communicate with other providers’ data sharing systems.
Health care providers don’t think patients can use their own medical information safely.
Players in the health care system see patient data as a valuable asset.
There’s “a growing attitude among almost everyone in the patient data chain — hospitals, labs, payers, software companies, device developers — that patient data sets are theirs to be monetized,” Dishman said.
Dishman noted that patients need access to many different kinds of data, including electronic health (EHR) record data and health claims data, consumer-generated health data, imaging data, diagnostic data, and gene sequencing data.
Under HIPAA, patients have a right to get their medical records, and the American Recovery and Reinvestment Act of 2009 (ARRA) requires providers that use EHR systems to give patients copies of their medical records in an electronic format, Dishman said.
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But patients can receive information in the preferred format only if the provider can produce the copy in the requested format, and providers have at least 30 days to make the records available, Dishman said.
“Congress must have envisioned a much easier and faster method for patient access to data,” Dishman said.
Members of Congress and other policymakers can help by promoting data and data sharing standards, and by supporting the creation of a standardized, machine-readable form that patients can use to share their own data with research organizations, Dishman said.
Today, Dishman said, providers often require patients to get and fax in consent forms each time they ask for their data to be shared.
Supporting new, outcomes-based reimbursement programs, such as accountable care organizations (ACOs), can also help, by giving providers a financial incentive to exchange patient information, Dishman said.