Kansas’ health information exchange has been years and millions of dollars in the making but because of an ongoing dispute between its two networks, it still lacks the capability to handle the exchange of digital patient records across the entire state.
Negotiations aimed at resolving those differences have so far failed to produce a data-sharing agreement. The two sides have significant ground to cover if network officials hope to meet the deadline for interconnectivity.
The two networks are: the Lewis And Clark Health Information Exchange (LACIE), which primarily serves providers in the Kansas City area; and the Kansas Health Information Network (KHIN), which serves most of the rest of the state.
LACIE and KHIN were given a year to connect under terms of the licenses granted to them by the state's regulatory authority. That July 2013 deadline was extended this spring to Dec 31.
At stake is this:
- If LACIE and KHIN are not connected by the deadline, $1 million in grants earmarked for them could be forfeit. The federal funds are part of $9 million granted to Kansas in 2009 for setting up a health information exchange;
- If the networks are not connected by the end of the year, they could lose their licenses to operate in Kansas. Doctors and hospitals who transfer records over a licensed network are protected from liability should inadvertent breaches of patient privacy occur; and
- Until the networks connect, most doctors and hospitals in the Kansas City metro area cannot remotely obtain patient records from providers elsewhere in Kansas, and vice versa. Without the connection, for example, an emergency room doctor in Wichita or Pratt seeking patient records from a Kansas City specialist will be left with the options they had for obtaining records before the exchange. Namely, they must rely on paper records transferred by fax machine, discs, mail, or patients themselves.
Although difficult to quantify, patient care is potentially being compromised every day that the networks remain unconnected, said the state's chief regulator of the exchange.
"The one thing we miss for every day that they don't connect is that ability to exchange all the data that's readily available" through each network, said Aaron Dunkel, head of KanHIT, the state's health information exchange regulatory arm at the Kansas Department of Health and Environment.
"The day-to-day data that is collected," said Dunkel, "at this point just isn't available during transitions of care or referrals from a KHIN provider to a LACIE provider, or vice versa. They still have access to the paper record format, but we're just not receiving that benefit yet of being able to do that transition of care or being able to do that referral through electronic means."
Eventually, digital health information exchange is expected to take the place of paper records. The hope is that quicker access to more complete patient information will improve patient care, help cut medical costs by avoiding redundant and ineffective treatments, as well as reduce errors — although critics say such benefits have yet to be demonstrated.
KHIN: A question of third-party access
Officials from KHIN and LACIE met last week on a conference call brokered by KDHE to seek middle ground on the data-sharing agreement.
"I thought the call went well," said Dunkel. "They see this — as we do — as one of the most important things we have left to do."
Laura McCrary, KHIN’S chief executive, said the major issue standing in the way of an agreement is a mutual understanding of how patient data can be used after it is transferred from one network to the other.
"We have the technical connection done — we maybe have a little bit of additional testing that needs to be done. We are hung up on the data-sharing agreement, and so that's really what we're continuing to try to work through," McCrary said.
"What our participants expect," she said, "is that the data be used for purposes of treatment — and if it's going to be used for anything else, we at least need to know what it's going to be used for and approve of that, since we have no secondary data use policy in our state.”
When asked for an example of a use that KHIN is seeking to prohibit via the data-sharing agreement, McCrary said: "Providing our data to an insurance company that's not a KHIN participant."
LACIE: No access to big data
From LACIE's perspective, chief executive Mike Dittemore said the impasse seems to stem largely from the two Accountable Care Organizations that are LACIE — but not KHIN — participants.
An Accountable Care Organization, or ACO, is a network of doctors and hospitals that shares responsibility for providing coordinated care to patients in hopes of improving care and limiting unnecessary spending.
"The agreement they've sent us said that basically if you were connected to an ACO, you couldn't get data from KHIN," said Dittemore.
The concern is that — because patient data on the networks is enormously valuable in aggregate — an ACO, insurance company, or other participant of a given network could access data on other networks for which it is not paying to access. That is, they could access data not directly related to the health care needs of an individual patient.
But Dittemore said that concern should not prevent the networks from reaching agreement.
"You can only query one patient at a time. Participants have no access to do large data inquiries — they cannot query on conditions, they cannot query on diagnoses, they can only query on the patient they are treating," he said.
Dittemore said that — while insurance companies, ACOs, and other LACIE participants cannot access aggregated data from KHIN — the entities in question could get data on individual patients as part of the standard payment procedure.
"What we have heart burn about is that, for example, if I'm seen by a provider on KHIN and I come over (to a LACIE provider) and they print that information out or scan it into their medical record — that right now under the agreement would be prohibited. And there's no way we can monitor that," he said. "So that's where we have the rub."
Kansas' statewide health information exchange went live July, 2012.
Patients of doctors and hospitals connected to Kansas' health information exchange have their records automatically entered into the system — which facilitates access to the records by other connected providers via a secure network — unless individuals opt out online or by using a paper form.
By the end of the year, according to network officials, 1 million Kansas patients are projected to have their records included on the exchange and about one-third of the state's hospitals will be connected.
"If an insurance company needs copies of a visit, and KHIN information has been put into a chart from that visit, then that's totally appropriate for that insurance company to get that information," Dittemore said.
‘Secondary data use’
The two network executives have long told state regulators that they are not competitors. Instead, they insist they are compatible entities seeking the same thing: improved health care delivery for the sake of patients. They've consistently assured regulators in monthly public meetings that they are working together toward that goal and that connecting to each other was progressing.
But at the May meeting of the regulatory board, that cooperative spirit seemed to be gone, as KHIN officials told regulators they sought to charge LACIE for the connection. LACIE officials objected. The board sided with LACIE, placing a two-year moratorium on such connectivity fees.
Asked recently whether the fees and the impasse over the data-sharing agreement were related, KHIN's McCrary said: "The fees were never really the issue. The issue really is around secondary data use."
Doctors, insurance companies and government payers routinely have access to individual patient data for:
- Treatment by doctors;
- Payment by insurance companies, Medicare or Medicaid; or
- Operations, which includes audits and quality assessment of doctors' performance.
But aggregated patient data on the network could also be useful to policymakers, insurance companies, researchers and others seeking to improve population health or to identify costly anomalies in health care delivery, for example.
That type of access is called secondary data use.
So far, however, there are no regulatory policies developed for who could have access to such aggregated data or for what purposes.
Not any easy issue to tackle
Currently there are 10 policies that regulate health information exchange in Kansas. Those policies — intended to protect the privacy and security of patient records on a licensed network — were crafted by members of the Kansas Health Information Exchange board.
The KHIE board voted in Sept. 2012 to hand over its regulatory authority to KDHE. Leading up to the vote, many board members expressed reservations about dissolving the body before tackling the issue of secondary data use.
Former KHIE chief executive Bill Wallace said crafting a policy would not be easy, as most questions surrounding secondary data use remain unanswered nationwide.
For example: "can it be used for commercial purposes and, if so, to what extent does patient consent to have their records exchanged also extend to the question of having their records analyzed for commercial purposes?” Wallace said.
Now that the state has regulatory authority over health information exchange, it will be up to KDHE to craft a secondary data use policy. Dunkel said he expects to take up the issue soon, once an advisory committee is formed.
"The one thing that's outstanding from the end of the board was the discussion around secondary data use, and I'm guessing that will be our first major agenda item," he said.
Under the law giving regulatory authority to the state, a 23-member advisory committee is to be formed with the following members or their designees:
- the KDHE secretary,
- the Governor,
- the chair of the House Health and Human Services Committee,
- the ranking minority member of that committee,
- the chair of the Senate Public Health and Welfare Committee,
- the ranking minority member of that committee,
- two consumer representatives appointed by the KDHE secretary,
- one employer representative appointed by the KDHE secretary,
- one payer representative appointed by the KDHE secretary,
- two local health department representatives nominated by KALHD,
- three hospital representatives (one from a critical access hospital) nominated by KHA,
- three doctor representatives (including two practicing physicians, one of which shall be in primary care) nominated by KMS,
- two pharmacist representatives nominated by KPhA,
- one representative of the University of Kansas Center for Health Information, and
- one representative of the Kansas Health Information Technology Regional Extension Center.
Dunkel said he plans to set a meeting date soon for members that have been identified.
"We're waiting on just a couple more recommendations," he said. "The consumer rep and the employer rep are really the hard ones to find. The ones recommended by the associations are pretty solid at this point."
"We need to get a meeting set for prior to the end of September," he said.
In the meantime, officials from LACIE and KHIN said they are continuing to work toward a data-sharing agreement.
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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