Patients Want Free, Open Sharing Of Personal Medical Data

By Christine Kern, contributing writer

Study shows information sharing seen as critical to almost three-quarters of patients.

American patients want free, open sharing of their personal medical data among physicians, hospitals, and other healthcare providers, according to a survey published by the Society of Participatory Medicine. The results were based on a telephone survey conducted in March by ORC International.

In fact, nearly 75 percent of American adults surveyed believe it is very important that their critical health information should be easily shared. Furthermore, 87 percent stated they were overwhelmingly opposed to any fees being charged to either patients or healthcare providers for the sharing of critical health information. “What this survey points out is that when critical health information can't be shared across medical practices and hospitals, patients are put at risk,” Daniel Z. Sands, MD, MPH, co-founder and co-chair of the Society of Participatory Medicine and a practicing physician stated in a press release.

According to Politico, independent sources noted doctors must often spend between $5,000 and $50,000 to set up connections allowing them to transmit health information to laboratories and health information exchanges or governments. They often face per-transmission fees as well.

And recently, according to Health IT Interoperability, the Director of Interoperability at Epic Systems revealed during hearing of the Senate Committee on Health, Education, Labor, and Pensions, that the EHR vendor charges $2.35 on a per-patient, per-year basis for Epic EHR end-users to exchange data with other providers. “We charge on a per-patient, per-year basis — so it's not per transaction — and it's the same whether that patient is sent to a hundred different places or one another place. And that charge is $2.35,” Peter DeVault said in response to a question posed by Senator Bill Cassidy, MD (R-LA).

“Sometimes hospitals have to pay thousands of dollars for data sharing capabilities to be turned on or supported,” Justin Lanning, Senior Vice President and Managing Director of Analytics at Xerox Healthcare Provider Services, explained to EHRintelligence.com. “That can be a significant challenge for some organizations. I believe it is key for us to assure that the systems already purchased and invested in provide interoperability as part of the system, and not at extra extraneous fees or complexity.”

The survey also found nearly 20 percent of respondents (or a family member) had experienced a problem receiving medical care because their health records could not be shared between different healthcare providers. Yet according to a survey conducted by PriceWaterhouseCoopers, 60 percent of providers face delays accessing current patient data and cited these limitations as a major barrier to effective use of health care information.

“We have the technology. What we need is for health care providers and systems developers to put patient interests ahead of business needs. None of them would exist were it not for the patients,” explained Dr. Sands.