Jennifer Brull’s father needed urgent medical attention.
Brull, herself a physician, was helping him collect everything he needed, including his most recent laboratory and scan results. Then she learned that one set of her father’s X-rays were at a hospital four hours away.
"We had to drive to pick them up," she said, recalling the incident, which occurred earlier this spring. "It was a real pain in the butt. You know, it's during a stressful time and we were dealing with a bunch of other things. This was just one more thing that we have to deal with, something that should have been easy. There's no reason in this day and age that we shouldn't have been able to accomplish that electronically.”
Dr. Jennifer Brull, who practices family medicine in Plainville, is a national leader in adopting electronic health records.
Starting June 1, patients of Kansas health care providers who are connected to the new statewide network will receive privacy notices telling them that their health records may be shared electronically, under the same legal protection that currently applies to their paper-based health records. Those who don’t want their records to be available on the network must mail in an "opt-out" form.
It isn’t the technology itself that is the barrier to more medical providers exchanging electronic records, she said, but the lack of a secure network to transmit them without risking patient privacy.
"We said, 'Just email it — it's fine, we'll sign a waiver.' They said they just couldn't do it," Brull recalled of the hospital’s refusal to transmit her father’s X-ray records and spare the family the eight-hour round trip.
Developers of a new statewide digital health records exchange say the needed secure network is coming to Kansas this summer. They call it a groundbreaking event that is expected to improve patient care and help cut medical costs by avoiding redundant and ineffective treatments. It’s also expected to reduce errors.
The statewide health information exchange is scheduled to go live July 1, allowing medical providers registered with the network to share and search for patient records.
Dr. Robert Moser, secretary of the Kansas Department of Health and Environment, said the exchange would safeguard patient privacy.
"We can assure patients that this information will be secure and safe and only available to those providers that need it, and at the time they need it," he said.
Patient information available on the network at first will be limited to demographics, medications, allergies, lab results and medical history, including diagnoses, procedures, surgeries and immunizations. But officials at the Kansas Health Information Exchange Inc. predict the system will grow to include more kinds of information, such as a doctor's notes or dictation recordings.
Substance abuse data will not be available on the network unless explicitly authorized by a patient.
About a third of Kansas patients receive care from a provider who is or will be connected to the exchange in the near future, officials said.
Benefits of exchange
As it is more widely adopted, health information exchange, or HIE, will take the place of paper records, which are typically transferred via fax, discs, mail or by patients themselves. And quicker access to more complete patient information should translate into benefits for patients.
"Right now we wait sometimes a month or more to get records," Brull said. "That time delay certainly impacts how you provide care to that patient."
She said the current paper system relies heavily on the patient to relay information from one care provider to the next. But too often patients don't know exactly what was done or what was learned by another provider.
"If you know real information, you're a lot less likely to order another test," Brull said. "That's what the free exchange of information gets you — you've helped the patient and eliminated costs."<a name="continued"></a>
Less paperwork also will mean less administrative cost, she said.
"I hope people look back 20 years from now or 50 years from now and say, ‘This was when health care in the United States changed. There's way less cost and better health care,’" Brull said.
From paper to iPad
The conversion from paper to electronic records will take years to be fully realized, experts say.
At the U.S. Department of Veterans Affairs, regional health information exchange began around 2002. After a decade working toward the goal, only recently have all of the VA’s 153 medical facilities nationwide become fully connected on a secure network, said Jim Gleisberg, a spokesman for the VA's Eastern Kansas Health Care System.
"Now we can have a veteran from Kansas go on vacation in Florida, and if he has a problem and goes to the VA in Florida, they can pull up his health records," Gleisberg said. "But it took awhile to get where we are today. It took at least 10 years to get fully there."
Most states have at least some regional exchange of medical information. But only about six states have attempted a full statewide exchange like Kansas, according to KDHE's Aaron Dunkel, who is the state's liaison with the federal health information exchange agency.
Jerry Slaughter, executive director of the Kansas Medical Society, said the further step of interconnecting state networks is a major challenge to realizing the full benefits of digital health records.
"They are just now beginning to tackle standardized interfaces at the national level," Slaughter said. "July 1 is not an end, it's just the beginning."
HIPPA restrictions on PHI
Protecting patient privacy
In the new Kansas system, access to medical records on the network will be restricted to providers who have a patient's permission and are providing care to the patient. Insurance companies and the federal Medicare and Medicaid programs will have access to records of patients they cover but only the information directly related to determining coverage and billing.
The privacy standards set in the Health Insurance Portability and Accountability Act, the federal law known as HIPAA, will apply to electronic medical records just as they do to those on paper.
It will be the job of the Kansas Health Information Exchange to enforce the standards of the statewide network.
KHIE is a quasi-governmental regulatory body. Its 15-member board includes representatives of patients, doctors, hospitals and insurance companies. Brull, Moser and Slaughter are members of its board.
KHIE board members have been working for several years to put in place the policies needed to oversee the privately owned networks that will be the technical backbone for the statewide exchange.
In April, KHIE sanctioned two networks: the Kansas Health Information Network (KHIN) and the Missouri-based Lewis And Clark Information Exchange (LACIE). Other networks may apply to join the exchange, but so far none have expressed intention do so, KHIE officials said.<a name="hacking"></a>
Laura McCrary, chief executive of KHIN, said some people are wary of having their records available on a network because they worry the information might be shared or used inappropriately. But she said patient privacy would be better protected with the new system.
"This is a much more secure way for records to be shared between providers than what we currently have with faxing. Faxes never arrive, faxes are picked up by the wrong person, faxes are collated incorrectly, parts of faxes are missing — those are part of the reason that medical care is not as safe as it could be," she said.
Health information networks are not immune to breaches, said Dr. Joe Davison, the KHIE board chair and a doctor with West Wichita Family Practice.
"As you can imagine, when records are on paper and there are breaches or lost records, they tend to be small losses. Unfortunately what health information technology will allow is huge amounts of data loss," Davison said.
"In this country we have a pretty good record for keeping other big data systems safe, such as our financial data. But even with that we have seen some breaches. So this is one of those cost-benefit analyses that everyone needs to make," Davison said. "If you add up all the factors, I think you'll find that the benefits far outweigh the negatives."
Digital breaches of patient information
Since 2009, federal law has required that all breaches of health records affecting 500 or more patients be reported for posting on a website maintained by the U.S. Department of Health and Human Services.
Of the 435 breaches listed on hhs.gov as of today, 40 involved hacking or other unauthorized access of a network server. The largest one exposed the information of 780,000 patients of the Utah Department of Health sometime between March 10 and April 2.
The rest of the breaches since 2009 affected patient information not on a network.
Theft, improper disposal and other unauthorized access have lead to 109 breaches of paper-based health information. The largest one occurred Jan. 1, 2011, and affected 175,350 patients of Accendo in Arizona.
The remaining 286 breaches involved some other storage media, such as desktop computers, laptops, external hard drives or other portable storage devices. The largest one of those occurred Sept. 13, 2011, when TRICARE Management Activity in Virginia lost backup tapes that included information on 4.9 million patients.
Three breaches have happened in Kansas, all involving stolen laptops. On Jan. 11, the Kansas Department on Aging had information about 7,757 patients exposed via a stolen laptop. The other breaches were in 2010 and affected 1,105 patients of Occupational Health Partners in Salina and 1,200 patients of Dr. Matthew Conrad, a Wichita plastic surgeon.
After June 1, patients of providers on the network health will have their records automatically entered into the new system.
Those who don’t want their records included must mail in an "opt-out" form. They will be informed of the opt-out form at their doctor’s office or the hospital but may not necessarily be provided the form there.
For now, opting out is all or nothing, meaning that those who opt out may not have their records selectively available over the network in the case of emergencies or other special circumstances.
Bill Wallace, KHIE chief executive, said that based on the experience of Nebraska’s exchange, which started in 2009, about 3 percent of Kansas patients likely would choose the opt-out.
That could mean the exchange will receive as many as 55,000 opt-out requests in the first month of operation. By the end of the network’s third year, the number of Kansans opting out is projected to be about 81,000.
<br clear="all" /><br clear="all" />Related story:
Coverage of electronic health records in KansasOverview
→ Kansas breaks ground on statewide digital health network (5/28/12)
→ The pros and cons of health information exchange: An interview with Dr. Joe Davison (5/28/12)
→ KanHIT Advisory Council to craft 'secondary data use' policy (2/18/14)
→ Kansas HIE networks connected ‘live’ for first time (12/23/13)
→ Network execs confident they will meet looming deadline (12/16/13)
→ Patient health exchange networks agree to connect (11/12/13)
→ The Kansas insurance marketplace that might have been (10/21/13)
→ Security and privacy of patient data subject of regulatory hearing (9/30/13)
→ Deadline looming for state's patient record exchange (8/26/13)
→ KDHE begins day-to-day duties of HIE regulation (7/19/13)
→ Network execs squabble over issue of exchange connectivity (5/23/13)
→ KU Hospital, Shawnee Mission going live on statewide health record exchange (5/9/13)
→ Governor signs HIE bill transferring regulatory authority from KHIE to KDHE (4/18/13)
→ This is why health IT systems aren't keeping up (3/19/13)
→ Senate panel hears bill to move HIE regulatory authority to KDHE (3/13/13)
→ Bill introduced to transfer regulatory authority from KHIE to KDHE (2/12/13)
→ Legislators request 'lengthy discussion' on HIE developments (1/16/13)
→ KHIE board members get cold feet on legal changes (12/13/12)
→ KHIE defers details of transition to KDHE (10/10/12)
→ KHIE board turns over regulatory duties to state (9/12/12)
→ HIE board delays decision on turning authority, costs over to state (8/8/12)
→ Regulators of health information exchange to consider ceding authority to state (8/6/12)
→ The cost of independent regulation of health information exchange (8/6/12)
→ KHIE board presented with proposal to dissolve the organization by August (7/11/12)
→ Far fewer than projected patients opting out of health information exchange (6/14/12)
→ Public awareness campaign begins for health information network (5/23/12)
→ Networks granted temporary licenses to exchange patient data (4/11/12)
→ KHIE committee changes course on funding scheme (3/26/12)
→ Rural Kansas doc featured as national technology leader (8/17/11)
→ State Medicaid officials announce new schedule for digital health records exchange (7/25/11)
→ Kansas health care providers get first look at exchange implementation (2/4/11)
→ Full coverage of health information technology in Kansas
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