Information Technology Feature: On the record
IT specialists are already working to create and implement the next era of resident-centered electronic health records.
One could view Peter Kress and his high-tech colleagues as driving concrete mixers amid the horses and buggies of the long-term care profession.
While the majority of operators are still wrestling with the clip-clop of basic electronic records keeping, Kress and friends are looking for places to start pouring superhighways. In most cases, vehicles haven't even been built to drive on their roads. But they're desperately needed so their plotting continues.
The group enters a new stage at the end of this month, when core members of a technology task group present their work for broader review by peers. The goal is to create a "continuity of care document" (CCD) for long-term care residents. The document, or electronic record, would be used and understood by all types of providers.
And it will be more resident-centric, rather than provider-centric, as it will focus more on the needs of the person, rather than the provider.
"Our industry is still pretty provider-centric in the way it thinks of health records," says Kress, chairman of the Electronic Health & Wellness Record Task Force of the Center for Aging Services Technology (CAST).
"CAST is looking to a future that links together a set of care provider networks and home-based technologies. That personal health record is the sort of glue, or place, where the care network assembles around. It's a consumer-controlled space. Right now, the industry is in interim mode, trying to build an interstate system."
Regional Health Information Organizations (RHIOs) currently handle patient records similar to the way Kress envisions, but those organizations all are provider- owned, he points out.
"We're speculating consumers are not going to be satisfied with a collection of providers all holding portions of their records," he says.
Instead, he envisions specialty "banks" hosting individuals' information. Hospitals and other providers will forward new data or information to a person's bank account. The bank then will honor the account bearer's wishes, as to what information can be dispersed, and to whom.
"The core of the nursing home mission is increasingly not becoming a place to go to end your life. Increasingly, it's where you go to get an episode of care. By definition, a nursing home is multidisciplinary and collaborative care. Physicians and third parties, even hospice at some point, may come in," pointed out Kress, who is also vice president and chief information officer for ACTS Retirement-Life Communities of Ambler, PA.
Insurers and others are trying to get a foothold in this record-keeping business, but Kress thinks independent entities may win out.
"For our particular clientele, there will be a lot of small-time banks in the early stage, for the next 10 to 20 years," he said. "And it will be standards that will be able to make them function. None of this vision is possible if these standards are not put into place.
"They're emerging right now. We're talking about organizations starting to innovate around the edges of this concept. We should expect to see rapid adoption of pieces around this."
Erickson Retirement Communities is clearly the best example of such innovation. The Baltimore-based continuing care retirement community (CCRC) company began offering residents access to their personal health records about a year ago.
"It's been a resounding hit. I wish that I had access to health data for me and my kids," said Daniel H. Wilt, vice president of information technology and security officer for Erickson. "A lot of this information is inside a clinical system that doctors and providers put into anyway. We're just giving residents a way to get into it."
Wilt said 2,100 Erickson residents, or about 12% of the chain's census signed up for the program. About one-fourth of all Erickson residents who said they used a computer are signed up. The average age of Erickson residents is about 83.
"When a resident goes to the hospital, instead of them interrogating an 85-year-old about what meds they're on – they could be on 10 meds and say they don't know, they have a blue one and a green one – why not just give them the list?" said Wilt, who is on the special CAST committee with Kress. "Getting over that hurdle, everything else comes into place.
"One of the big debates internally was getting to the realization that these records are owned by the resident, not by the healthcare provider. Getting over that hurdle, everything else comes into place."
Erickson residents currently print out locked, easy to read copies of their files. More complex standards and protocols eventually will be adopted, Wilt said.
"There's going to be some heavy lifting to figure it out," he said of the health-records mission. "Every healthcare group has its own set of forms, and they're all slightly different, with just two or three pieces of information that may not correlate very well. Healthcare can get pretty complex (compared to financial transactions, for example) so that's why it's gone a lot slower. But eventually it will get worked out. We may see some things next year, with pilot projects."
Change is coming
CCRCs and traditional nursing home providers may view record-keeping issues slightly differently, but they will all be part of the coming changes, believes Sue Mitchell, director of clinical systems for Omnicare Information Systems.
"The GAO (Government Accountability Office) report that came out not long ago said the current way of funding long-term care services is not sustainable and models will have to change," said Mitchell, a national expert on health records. "What you're seeing as far as interests and focus of CCRCs is really a petri dish of how things may be evolving for the broader senior care community."
States' experiments with RHIOs, as well as other private ventures, are noble stabs at creating something workable, she says. But much still remains unresolved.
"I hate to say it, but we're making it up as we go along. It's a whole new world," she says.
"Providers need to be looking at more patient-centric records. It's good for people to think in that new paradigm. The national agenda is absolutely buying into this 'personal ownership' and taking more responsibility. Be aware that standards bodies are truly looking at this and trying to figure out what will be beneficial in this area."
While no one predicts a speedy cure-all, providers must be ready for sweeping change, says Lori-Ann Rickard, president of Rickard & Associates, a Michigan law practice specializing in healthcare law and electronic medical records.
"It's certainly something everybody's talking about and looking toward, though it doesn't exist yet. What's being built on here is experience with electronic medical records," Rickard said. "If we were talking about it five years ago, people would be asking how you do it and can we really do it. What we know is technology moves fast. A blink of an eye is five years."
What to do
There are numerous ways providers can help themselves.
"Just getting the caregiver to put data in an electronic format is huge," says Jeff Jordan, managing director for Keane Care, Redmond, WA. "Until you they go do that, you can't work on phases two, three or four. Until you have met that basic need, you're going to have 300 flavors of medical records.
"Most vendors are saying, 'We'll help you define what you can do or can't do currently and then wait for someone (regulator) to say you need to do this or this,'" Jordan added.
Once standards are defined, attention will have to turn to individuals' "health literacy," believes Alan Letzt, executive vice president of Vocollect Healthcare Systems.
"The part you don't hear discussed so much but of concern to me is health literacy in this context," says Letzt. "As everyone is provided with this comprehensive health record, my concern is that without considerably better health literacy levels for people, this is information that could be, at best, confusing or misleading.
"The overall trend throughout society, especially healthcare, is not just more information but more detailed information, and you need better analysis of the information at your disposal," he explained. "If you agree that the trend is going to be toward more information, more detail, more analysis, then how do you manage this so it makes sense from the individuals' viewpoint and the providers' viewpoint?"
With the rise of more universal health-record keeping, Letzt feels three main things must be kept in mind: protecting resident and patient privacy, not leading people to become hypochondriacs with so much information at their fingertips, and giving healthcare providers the best chance to do their very best at care giving.
Leslie Fox, a 38-year veteran of the health information management industry, has some of the same concerns, particularly about personal record keeping.
"It is a movement that is really gaining traction the last couple of years," said Fox, CEO of CARE Communications, which has helped manage healthcare organization's data management for 30 years. "But most people have a very rudimentary form of health record today. The individual consumer isn't really trained at keeping records, so they don't know what to keep."
There is little question that more complex record keeping is part of the future, says Peter Cazon, senior counsel at Alston & Baird's healthcare practice. And while health literacy and privacy concerns are near the top of the list, the top challenge – at least in the short term – is the issue of interoperability, he says.
"At some point, there has to be an agreement as to what gauge railroad track this engine is going to run on," Cazon said. "Otherwise, it's not going to be able to go anywhere."
CASTing call for standards
The Center for Aging Services Technologies (CAST) and the American Health Information Management Association (AHIMA) are combining talents to develop requirements, recommendations and guidelines toward the adoption of an HL7 implementation guide for an "aging services Continuity of Care Document (CCD)," or portable personal health record.
A program of the American Association of Homes and Services for the Aging, CAST has worked for two years to find a way for providers to leverage standards-based health information exchange.
"It is our contention aging services organizations must leverage existing and emerging standards to support sharing of electronic personal health and wellness information across aging services care settings both within and across organizations and, most importantly, with consumer's own personal health records," a statement from CAST leaders reads. "We believe that an HL7 approved CCD for aging services with support for functional status and wellness content will be an important foundation for realizing health and wellness information sharing."
The group's main goal is to start work that will result in an HL7 approved implementation guide, progress standards related to functional status and wellness content, and complete formal interoperability demonstrations of vendor, provider and consumer uses.
More is listed on the task force's Web page, at http://continuityofcaretaskgroup.pbwiki.com.