Healthcare // Patient Tools
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7/20/2011
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Give Patients Complete Access To Their Data

Speakers at InformationWeek Healthcare's IT Leadership Forum believe complete data access for patients and more wide-reaching health information exchanges are in your future.

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The Pain Of Change If there's one thing that's going to revolutionize healthcare, whether it's IT, ACOs, or any aspect of health reform, what you're going to see is patients taking back healthcare from their providers." That's the prediction Neil Calman, MD, the CEO and co-founder of the Institute for Family Health, made at InformationWeek Healthcare's IT Leadership Forum in New York City earlier this month.

That transformation will make life a bit painful for CIOs and clinicians alike. Calman went on to say: "You're going to see patients who want complete and unfettered access to their medical records. Forget all this where we're going to keep the data to ourselves for seven days before it's released to patients, or we're going to create models of abstracted data to give to people. They will have total and complete, instant access to their medical information, whenever, in multiple formats, however they want it."

Each of those modifiers--instant, complete, unfettered--would rip away a security blanket healthcare practitioners and IT leaders cling to when they talk about giving patients access to their medical records.

>> Instant: Some providers now give patients access to lab results, but they wait several days so that doctors have time to talk with their patients about the results.

>> Complete: Should patients be allowed to read their doctors' notes? To access every lab result? To see images they aren't qualified to assess?

Dr. Neil Calman
Patients are "taking back healthcare," said Dr. Neil Calman (with Marhefka)
>> Unfettered: Currently, patients can read their health records, but only through the hospital's sanitized portal, not as a raw download they can take with them. And most facilities don't offer a means for the patient to make comments, or correct something they think is wrong.

Calman's fellow panelist, Karen Marhefka, associate CIO for UMass Memorial Healthcare, said that when UMass Memorial considered setting up patient portals, its lawyers advised against mingling other information with the clinical data, even if comments could be identified as coming from the patient.

But Calman predicted that every major EHR system or portal will soon allow patient input. "Everything we do in medicine depends on what the patient told us," he said. "The subjective part of every progress report is [clinicians] writing down what the patient told us. But when the patients write it down themselves, the lawyers can't deal with that? These are the transformations that will have to take place."

Some 15,000 people now use the Institute for Family Health's portal to view records. But he predicted it won't be long until patients expect to get their records in a downloadable form of their choosing--and that HIPAA and other regulations will be amended to give patients that kind of portable access to their records.

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