Within two years, Pennsylvania should have in place a first-generation, Internet-based communications network that allows for the exchange of patient health data among doctors, hospitals, pharmacies, insurers and, eventually, the federal government.
It will be -- according to its advocates -- one of the great nonclinical medical advances of our age, carrying with it lofty expectations that it will improve outcomes and save money for the U.S. health care system.
"It's a huge deal," said Martin Ciccocioppo, vice president of research at the Hospital and Healthsystem Association of Pennsylvania. It will begin "an amazing evolution for the delivery of health care," said Pam Clarke, vice president of health care finance and managed care at the Delaware Valley Healthcare Council.
The "it" in question is a health information exchange -- HIE, for short -- and in Pennsylvania and elsewhere, the structure and the operational goals of the exchanges are quickly taking shape.
Pennsylvania has been staked to about $17 million in federal stimulus money to help build its statewide HIE system, and in February 2012, Republican Gov. Tom Corbett made appointments to the new Pennsylvania eHealth Collaborative Advisory Committee. In the intervening months, stakeholder groups have been meeting with consultants and contractors to iron out the finer details of the exchange networks.
When the exchanges are fully in place, and fully in use, it will mark the culmination of decades of ambition, development and false starts; Pennsylvania itself has seen two reboots, most recently in 2010, when a $31.7 million contract between the Rendell administration and a health IT firm called Medicity to build an exchange was nixed.
Initially, under the administration of Democratic Gov. Ed Rendell, Pennsylvania had envisioned a one-stop repository, built and maintained by the state, called PHIX, or the Pennsylvania Health Information Exchange. Outside health systems and medical providers would have then plugged into that central system.
But the approach now favored by Pennsylvania is a "thin layer" umbrella communications system, more decentralized, which rests on top of the existing or under-development regional health information networks -- such as the one now being built by Highmark and Verizon, or the joint partnership between Heritage Valley Health System and UPMC, called ClinicalConnect.
In all, there are six such systems operating or under development in the state; ClinicalConnect expects to go live with a soft launch in early June.
The statewide umbrella system -- a "shared services" network -- would allow communication with and between all of those regional systems, facilitating interactions between one exchange and another. That system and its specifications are being molded right now, and could go out for bid by Aug. 1.
It is, as one might imagine, a hugely complicated process.
"The next 30 days, everything is going to start to come together," said Kelly Lewis, the former state representative and head of TechQuest Pennsylvania who this month launched his own health data exchange group, called Allied Health Information Exchange.
"Several states are ahead of us, but we're going to catch up real fast," he said.
Robert Torres, the state's health information technology coordinator and head of the Pennsylvania eHealth Collaborative, said the strategic and operational HIE plans were approved two weeks ago by the federal Office of the National Coordinator for Health Information Technology. That approval, he said, was the result of 11 months of planning by the Pennsylvania eHealth Collaborative and its various working groups.
Among the issues discussed by those stakeholders:
• Communication -- The communications networks are the backbone of the information exchanges. The most basic system, available to smaller medical offices as well as large hospital systems, is a point-to-point network that allows one provider to "push" health records to another. It is, essentially, a highly secure email system, because "you can't just send health information on [regular] email," Mr. Lewis said. "That's a HIPAA violation."
To foster the development of such a system, in June, Pennsylvania is going to begin marketing "Direct," a communications platform built for clinical use. In May, the Pennsylvania eHealth Collaborative announced the availability of grant funding to eligible "health information service providers" -- health IT contractors, in other words -- to help them enroll providers in the Direct Project email system. The deadline to apply for those grants is July 15.
More complex than the "push" system, in which two providers can swap information, is a "pull," or query, system, in which an emergency room in Philadelphia can retrieve all of the medical records of a car accident victim who lives in Pittsburgh.
That's the sort of network-to-network record sharing that should be possible when all of the regional HIEs are fully mature, and when the state's shared services network is in operation. Best-case scenario: That could happen early next year, though full HIE-to-HIE connectivity could take 24 months or more.
"It's such a big puzzle," Mr. Torres said. "There are a lot of different things happening at the same time."
• Research -- Right now, there's a wealth of health data out there, but they are contained in multiple silos, with no easy way to access all the data at once. When the data eventually is accessible via the statewide grid, they could be made available -- at least theoretically -- to researchers who want to study various diseases, treatments and health policies.
Should they be able to? And how would the system be able to guarantee that the information accessed by researchers would be "de-identified" -- that is, scrubbed of personal information such as names, Social Security numbers and so on?
Related question: Should the state warehouse the information so it can sell access, raising money that could help sustain the network going forward?
For now, the answer is no.
"This is a utility. It is not going to be a repository," said Mr. Ciccocioppo, though the system may include a master list of patients and providers.
Earlier versions of the bill to create Pennsylvania's early-stage HIE allowed for the "potential future use of de-identified information for research purposes," but the current version of that bill eliminated that language.
"People were concerned about the secondary use of data," Mr. Torres said. "That was one of the first issues to come up" when the workgroups began meeting last July.
Selling access to the data could help pay for the system, however, so it is something that could be reconsidered down the road. And, according to one PricewaterhouseCoopers survey, 9 in 10 health care executives believe "that the secondary use of health information will significantly improve the quality of patient care and offers the promise of even greater benefits in the future," meaning the real value of HIEs lies not just in its real-time application, but in the ability to sift through years of data to improve care.
• Privacy -- Inevitably, some people won't want to be a part of the statewide exchange, or even the limited regional ones. So does the state allow for a system that includes everyone by default, then allows them to opt out? Or is it an "opt-in" system -- that is, you have to agree to participate before your data can be shared?
Right now, Senate bill No. 8 -- the bill that would create Pennsylvania's HIE -- would enroll patients by default but allow them to opt out via some kind of consent form issued by their doctors and providers.
The bill, which was moved out of the Senate's communications and technology committee this month and awaits Senate floor consideration this week, would also create a governing board, with 15 voting members, that will set policy and procedural guidelines for the information exchange.
If the board isn't in place by June 30, the $17 million in federal setup money could be yanked.
• White space -- You wouldn't know it in the Pittsburgh region, but not every provider or physician is affiliated with a major hospital system. So independent physicians -- those stuck in the so-called "white space" between big hospital system and insurance carrier exchange networks -- will have to be educated about the HIEs.
They'll also have to be told how to link up with one of the six different state-certified vendors that are able to connect a clinic with the Direct communications system.
While there are financial incentives for an independent physician to join a regional HIE or sign up for the Direct messaging system, it's still voluntary. Reaching out to those physicians, to explain the value of connectivity should be one of the state's primary goals, said David Carleton, chief information officer at Heritage Valley.
The billion-dollar question on a lot of minds: How will the systems work? And will they reduce redundancies, cut down on cost, reduce errors and improve the quality of care, as promised?
Skeptics believe that health IT networks and electronic medical records software are being deployed without being fully vetted. They say that the frenzy to put the systems in place is, at best, a big gift to IT companies or, worse, a counterproductive effort that may actually diminish the quality of care. Any savings wrung out of the system by eliminating duplicative MRIs will be gobbled up by the cost of constant hardware and software expenses.
Mr. Carleton isn't one of the doubters, noting that one of his adult sons has severe allergies. What if his son were to be hospitalized, unconscious, somewhere in the Pittsburgh region?
If a UPMC doctor is on the job, he'd first see a record of the son's interactions at UPMC. But then "a little green light" alerts the doctor that there is more patient data available from his Heritage Valley doctors, through ClinicalConnect.
That will be a common scenario, Mr. Carleton said, because about 62 percent of Heritage Valley patients also have crossover treatment with UPMC facilities or doctors.
But what if that same son were hospitalized in non-UPMC or Heritage Valley territory?
"Here's the thing: They don't know his allergies. They could kill him," Mr. Carleton said.
In a year or two, when the ClinicalConnect system links with the Geisinger system -- and when they all ultimately plug into the Nationwide Health Information Network, a system that will connect HIEs across state lines -- that nightmare ER scenario won't be as much of a worry.
"To me," he said, "that's a life-changing event."
The system is not quite there yet; there are still technology and governance issues to sort out. But almost a decade after Republican President George W. Bush appointed the nation's first health IT czar -- with a goal of having a nationally accessible system, containing the electronic medical data and continuity of care records of every American in place by 2014 -- such a system is finally coming into focus.
"What happens right now is a cobbled-together system of faxing and telephone calls," Mr. Ciccocioppo said. The exchange "is going to improve the ability of caregivers to treat [patients] appropriately at the right time, at the right place."
Bill Toland: email@example.com or 412-263-2625. First Published May 27, 2012 12:00 AM