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HIT Megatrend: Patients will have Instant, Complete, Unfettered Access to their Medical Records

July 16, 2011

Healthcare Needs Help On Transparency

(from Information Week – Posted by Chris Murphy on Thursday Jul 14th at 6:11pm)

Dr. Neil Calman wrapped up Tuesday’s InformationWeek Healthcare IT Leadership Forum in New York City with a few predictions, including one portending radical change in people’s access to their health records.

He started with the big picture. “If there’s one thing that’s going to revolutionize healthcare–whether it’s IT, ACOs, any aspect of health reform–what you’re going to see is patients taking back healthcare from their providers,” said Dr. Calman, a physician who is CEO and cofounder of the Institute for Family Health, which runs 17 health centers in the Bronx, Manhattan, and the mid-Hudson Valley in New York State.

Then Dr. Calman got more specific, including one prediction destined to raise some blood pressure:

“You’re going to see patients want complete and unfettered access to their medical records. Forget all this about 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 — complete, unfettered, instant — would rip away a security blanket that healthcare providers and health IT leaders cling to when they start talking about giving patients access to their medical records.

Instant: Some providers 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?

Unfettered: This will mean letting patients have their full health records — and not just through a hospital’s sanitized portal, but as a raw download they can take with them, Dr. Calman predicted. And they’ll have to offer a means for the patient to make comments, or corrections in places where they think the information is wrong, he said. Dr. Calman’s fellow panelist, Karen Marhefka, associate CIO for UMass Memorial Healthcare, said giving patients the ability to comment on records was a concern when UMass Memorial assessed vendors for its planned patient portal. Its lawyers advised against allowing other sources into the providers’ clinical data, even if comments could be identified as coming from the patient.

Dr. Calman predicted that every major electronic health record system or portal will soon allow patient input, and that it shouldn’t be controversial. “Every single thing we do in medicine depends on what the patient told us,” he said. “… The subjective part of every progress note is us writing down what the patient told us. We don’t have any way of independently verifying it. But all of a sudden, when the patient can write it themselves, it becomes something the lawyers are all freaked out about. Anyway, these are the transformations that are going to take place. They just change the way we think about everything in healthcare.”Some 15,000 people now use the Institute of Family Health’s portal to view records, Dr. Calman said. 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.

Concerns that patients will misinterpret lab results are legitimate. And letting patients add their own comments or data to their health records does raise some new legal liability questions. But health IT leaders and their clinical peers shouldn’t waste their time trying to stop this transparency movement and instead must pour their energy and intellects into coming up with workable solutions. (And there was plenty of that in evidence at the forum.)

Concerned that a patient will misunderstand a test result? Health providers will need to arm that patient beforehand with information about what the test’s looking for, and where to get more information about it. They’ll need to push EHR vendors to build more such links into their products — links to reliable data sources, right from an EHR portal.

Giving people access to their medical records is closely related to another phenomenon: people turning to Google or Facebook as soon as they get a diagnosis. Anyone who has done that knows you’re likely to read a lot of worst-case scenarios and quackery, and can understand why Debra Wolf, a professor of nursing at Slippery Rock University, says that social media “frightens me to death.”

People are “going out to find patients like themselves,” said Wolfe, in an earlier discussion at the InformationWeek Healthcare Forum. “What frightens me is they don’t know how to safely evaluate a website.”

Noteworthy is the fact that Wolfe is looking for ways providers are helping patients get better information, not hoping to cut off access. At some hospitals, when nurses are discharging patients, they’ve been trained to ask, “Are you using a website for health information?” and offer tools to assess a site’s quality and reliable sites that people might consider using. People will inevitably look to the Web and social sources for healthcare insights, so “we need to meet them out there,” Wolfe said.

Same goes for people’s digital health records. As patients demand access, health IT leaders will need to focus on making that experience valuable, not getting in the way.

About

A blog dedicated to the fight for social justice, logic, efficiency, quality and compassion in the way health services are delivered, paid for and regulated. My hope is to engage with you in a bold conversation of health care issues – and share my perspective as a physician, as CEO of a non-profit health care system, and as one who seeks to make the lives of those around him happier and healthier.

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