Who Owns EHR Data? - InformationWeek

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9/9/2014
09:16 AM
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Who Owns EHR Data?

The owners of electronic health records aren't necessarily the patients. How much control should patients have?

or payment notifications, about 48% of primary care doctors did not follow up with patients after a visit and of those who did, only 9% used their portal to do so, TechnologyAdvice found. Instead, they used less cost-effective means, such as phone (24%) or letter (13%).

To encourage portal adoption, CIOs must ensure these systems are easy to use and provide patients with valuable information. Providers typically rely on staff and volunteers to encourage enrollment, often when the patient is admitted to a hospital or during a doctor visit. That's the approach Florida Hospital Celebration Health takes. The hospital is designing a portal where released patients can review their records, watch videos related to their treatment, receive lab information, and stay connected to the hospital.

"We are looking at ways we can leverage technology to keep those patients engaged," says Sandra Reeder, director of nursing at Florida Hospital Celebration Health. "Again, trying to keep them engaged so as soon as they leave so they don't feel everyone's washed their hands of them."

That's also the approach for South Nassau Communities Hospital. The hospital installed FollowMyHealth portals from Allscripts as part of its effort to achieve Meaningful Use Stage 2. Volunteers help patients create accounts while they're at the hospital, and participants receive access to records, lab reports, discharge summaries, and other personal information.

Technology Advice study of 430 patients who had seen their primary care physician within the last year.
Technology Advice study of 430 patients who had seen their primary care physician within the last year.

Consumers can populate portal profiles with their photographs, demographic and family history information, and other data, and access their file from any computer, says Rosenhagen. The cloud-based portal is always current, and automatically updates whenever patients are seen as an inpatient at the hospital or emergency room, he adds.

"That's giving the patient more information, at no cost to them, and it's what patients have really been crying for a long time," says Rosenhagen. "The bureaucracy, the way it was set up, never allowed the patient to freely access their information. They always had to pay somebody to get somewhere."

Before EHRs, hospitals in New York could charge up to 75 cents per page in copying fees -- for records that could run to several hundred pages. Downloading patient data to CDs, which South Nassau Communities considered, is time-consuming, inefficient, and costly.

"The only way you can succeed is by being transparent," Rosenhagen says. "The more savvy people get, the more demands will be made and the more a hospital has to respond. They have to be totally transparent and absolutely committed to make it right."

Access can, of course, create the occasional problem if a patient disagrees with a diagnosis. In a case like this, Rosenhagen reviews the EHR entries, brings together the different parties, and determines how clinicians made the diagnosis. When facing an unpleasant nomenclature, some patients fight the entry in their record. Providers must review complaints or disagreements, even if ultimately the doctor's diagnosis is determined to be valid. "If we made a mistake we have to fix it, and we have to find out why it happened and how it happened," says Rosenhagen. "We might also find it's not a mistake" but merely a patient who doesn't want something like alcoholism on his or her medical record.

If the diagnosis stands, South Nassau Communities will include the complaint and the patient's response.

"Every time that record is printed or reviewed by anyone, that complaint in the words of the patient and signed by the patient, dated by the patient, will be available for them as well," Rosenhagen says. "People can make an educated understanding of what took place. It's there, but we may not have found the ability to make that addendum or amendment because we couldn't prove it."

The government mandates healthcare organizations allow consumers to review and annotate their EHRs, although providers don't necessarily have to amend their records if they stand by their original prognosis, says Brenda Tso, associate attorney at healthcare specialists Khouri Law Firm. EHRs can, therefore, include doctors' original diagnoses, patients' disagreements, and the providers' ultimate conclusion. Subsequent providers then can review the entire electronic file, she says.

"I think that was the intent of the laws: To give greater access to the patients but also allow hospitals the ability to make a justified attempt to learn the facts," Rosenhagen agrees. If the facts don't justify changing the record, the hospital needs to be able to make that call and justify the reason why, he says.

Limiting access
As stewards of patient data, it's incumbent on healthcare providers to prevent unauthorized people from accessing records. That includes staff members who might want to nose into a neighbor or ex-spouse's condition, even when they are not treating them. South Nassau installed the patient privacy

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Alison Diana is an experienced technology, business and broadband editor and reporter. She has covered topics from artificial intelligence and smart homes to satellites and fiber optic cable, diversity and bullying in the workplace to measuring ROI and customer experience. An ... View Full Bio

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AliN258
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AliN258,
User Rank: Apprentice
10/30/2014 | 5:25:08 AM
EMR data
My former billing company who also owned our practice EMR has refused to provide us access to the OLD data and has disconnected my staff and my username and access after we changed to a new billing company?

What is the current rules of practice and traditions in such a case?

Thank you
GaryAk
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GaryAk,
User Rank: Apprentice
9/14/2014 | 5:42:23 PM
HIPAA needs to be revised
A patient in many cases has to go through a lot of hoops to get their own records.   Having to sign a form every time following a visit or procedure to get one's own records is silly.   Having providers not be willing to email or fax electronic records to your home because it is not secure, even when you are willing to waive your 'privacy' rights.


It is a rare doctor that agrees to email back and forth with a patient, relying on some secure, encrypted form of electronic communication that is functionally complex and difficult even for a tech-savvy patient to keep.


HIPAA needs to be amended to allow the option for simpler forms of communications and less barriers to the patient to get their own records electronically or otherwise.
Alison_Diana
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Alison_Diana,
User Rank: Author
9/10/2014 | 4:48:41 PM
Ownership Records
Interestingly, most people who shared this story on Twitter and then posted their own answer to the headline's question responded, "patients." 
Alison_Diana
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Alison_Diana,
User Rank: Author
9/10/2014 | 4:47:48 PM
Re: Governance and strategy
Yes I think healthcare organizations would be well-served if they move away from focusing so much on compliance (which is, of course, necessary) and focus more on risk-management and transparency, when it comes to data and security. As the South Nassau executive said, patients want more transparency from their healthcare providers -- in terms of cost, access to their own information, and providers' records for safety, etc. -- and those that deliver this information are most likely to succeed over those that continue to make this info hard to find or access. CIOs and their IT teams play an integral role in making this happen securely.
pfretty
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pfretty,
User Rank: Ninja
9/10/2014 | 11:16:00 AM
Governance and strategy
"The CIO is responsible for creating the foundation for a new culture of transparency." This is such a key component of today's data-laden society. And, its especially true in sensitive field like the medical industry. Going forward organizations need to place more emphasis on developing, nuturing and mantaining data strategies while embrace proven governance tactics.  Obviously both will come with maturity, but its the organizations who embrace it early who will surface as leaders. 

 

Peter Fretty
Laurianne
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Laurianne,
User Rank: Author
9/9/2014 | 1:49:20 PM
Re: preferred contact
Medicine is one of the few industries where you still see fax machines in heavy rotation.
Ariella
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Ariella,
User Rank: Author
9/9/2014 | 12:25:53 PM
Re: preferred contact
@Alison As I said, I don't care for letters, though I have recieved a few from doctors or hospitals, particularly if they wanted to make some official communication prior to or after a particular procedure. But I really thought it was total overkill when a doctor sent a note that the office didn't show that certain tests were done via certified mail. That was a pain, in fact, b/c the mail carrier just left the slip about it in my mailbox without giving me the chance to sign for it. And the slip doesn't even let you know who the sender is. So I had to trek over to the post office the next day to sign for the letter -- as I had no idea what it was or how urgent it may be.
Alison_Diana
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Alison_Diana,
User Rank: Author
9/9/2014 | 11:55:53 AM
Re: preferred contact
The preference for letters by such a big number of doctors really shows, in my mind, the comfort level some practices have with the old ways of doing things and their discomfort with trying new, more efficient means of communication. When you think about it, letters are expensive: They take time to personalize, print, and stuff into envelopes, and they're expensive over time -- paper, print, envelopes, labels, stamps, and staff time. You also have to ensure patients' mailing addresses are kept current (which billing requires too, of course). 

That said, a lot of doctors' offices still rely on fax a lot. In dealing with two specialists recently, I was surprised to learn that one doctor faxed his records over to the other doctor's office; the other doctor, in turn, wanted to send her records back electronically but was forced to fax them back because the first doctor didn't have the capacity to receive them electronically (despite using an electronic health record in his practice). Unsurprisingly, during our first visit to the second specialist, part of my daughter's record was missing because the first doctor's assistant hadn't sent over the complete file. 
Ariella
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Ariella,
User Rank: Author
9/9/2014 | 11:50:24 AM
preferred contact
I'm surprised as many as 13% prefer letters. It seems so inefficient. I'd fall into the majority here with a preference for phone, and email as my second choice.
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