Technology makes patient access to medical records easier than ever, but the cost of such data prevents many from doing so, according to Niam Yaraghi and Joshua Bleiberg, fellows at the Brookings Institution.
Access to health information is beneficial for patients, allowing them to take a bigger role in their care and enabling them to share the information with other providers, Yaraghi and Bleiberg write at Brookings' TechTank. The latter is especially important because of the lack of interoperability of electronic medical records, they add.
But while there are virtually no costs of reproducing digital records, "many states still use the same regulatory model--which is based on the number of copied pages--for paper and digital records," they write.
Through a Google Survey, the two Brookings fellows asked 120 patients how much they would be willing to pay for their records. Sixty-eight percent said they wouldn't pay a dime to have access to the information; 10 percent said they would pay between 1 cent and $9.99; and 6.4 percent would pay between $10 and $19.99.
This is an area that involves not only healthcare professionals, but those on Capitol Hill, as well. Putting health information in the hands of patients has been one of the goals of the 21st Century Cures initiative. During a panel discussion that included lawmakers and industry professionals last June, the importance of giving patients a voice in their care was a primary focus.
To improve patient access, Yaraghi and Bleiberg say patient advocacy groups should educate patients on the value of their data, which may make them more likely to want access to the information.
In addition, because the cost is almost zero to reproduce medical information through electronic health records, "state regulations should undergo a major revision and require the medical providers to let patients have their medical data for free," they conclude.
Patient advocate Regina Holliday has been one voice in the industry calling for such change.
"You want to have access to that information before there is a crisis. You don't want to build that system up in a moment of need. [Y]ou want to be able to see the long tail of care, to be able to look for patterns," she told FierceHealthIT in an interview in October.
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