Most patients willing to share health data with researchers, employers

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A majority of patients would be willing to share their healthcare information with researchers, employers, health plans, and their doctors, according to a Truven Health Analytics-NPR Health Poll.

More than 3,000 people responded to the survey, which included questions on information sharing, electronic medical records and privacy concerns.

More than two-thirds or 68 percent of the respondents said they would be OK with sharing health information anonymously with researchers. According to the survey's author, that number increases with level of education and income. Millennials, those 35 and younger, were the most likely to be willing to share information anonymously at about 70 percent.

But the benefits of sharing data are also marred by the numerous hacking incidents in recent months, including one in which a physician at Brigham and Women's Hospital was involved in an armed robbery when the assailant stole a laptop and cellphone and forced the victim to provide passcodes and encryption keys to the devices.

When it comes to EMRs, 74 percent of the survey's respondents said their physician uses an EMR, and only 5 percent said they had been told their medical records were compromised or accessed without their permission.

Fourteen percent were concerned about the privacy of records held by their hospital, 11 percent with records held by their physician, and 10 percent with records held by their employer.

Among other report findings:

  • Just 22 percent would be OK with sharing credit card purchase information and social media info with their provider. That number decreases among older respondents
  • Of those whose records were compromised, 37 percent said the incident occurred 1 to fewer than 2 years ago
  • 44 percent of respondents have looked through their health information kept by their physician

Even with the possibility of security risks, some cite how sharing health data is important in advancing healthcare and medicine. "The next big breakthrough in medicine could develop because you shared your health information. All of us--patients, providers, and entrepreneurs--have a stake in making this happen," Beth Seidenberg, M.D., writes at Wired.

In addition, data about patients' routine doctor's office visits could be used to improve care among the population at large, according to a discussion paper by the Institute of Medicine.

To learn more:
- check out the survey results (.pdf)

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