February 14, 2011

Ten Elements of a Successful HIE
By Elizabeth S. Roop
For The Record
Vol. 23 No. 3 P. 10

Reports indicate health information exchanges are making serious inroads toward delivering on their intended goals.

During the past two years, health information exchanges (HIEs) have experienced rapid transformation. For the surviving initiatives, the most significant changes revolved around achieving sustainability and expanding functionality to meet the evolving needs of stakeholders and communities, leading to successes that created a domino effect within the HIE environment.

“Two years ago, it was still unclear whether or not the race was winnable,” says Aaron Seib, National Health Information Network program director. “But it was like the runner who broke the five-minute mile. Once one did it, others quickly followed suit.”

Many of the most notable advances are detailed in the results of the eHealth Initiative’s (eHI) 2010 Annual Survey of Health Information Exchange. Notably, the survey found that the number of operational exchanges increased from 57 in 2009 to 73 in 2010. Also significant was the number of initiatives that could be considered sustainable, including 107 that were not dependent on federal funding and 18 that broke even through operational revenue alone.

Participants also reported increases in the functionality offered through the HIE with respect to meaningful use. The top three were connectivity to EHRs (67), results delivery (50), and health summaries for continuity of care (49). The top five types of data exchanged by the initiatives were laboratory results (68), medication data (63), outpatient laboratory results (62), allergy information (61), and emergency department episodes/discharge summaries (58).

Despite significant progress, HIEs continue to struggle in several key areas. In particular, “sustainability, information sharing, and interoperability continue to be major challenges, and they are all related,” says eHI CEO Jennifer Covich. “Sustainability is an issue primarily because if you think of health information exchange as an underlying ‘utility’ used by multiple stakeholders, it is difficult to develop a business model for it.”

Covich notes that new initiatives continue to make some of the same mistakes as their predecessors—mistakes that can impede their ability to achieve viability and sustainability.

“There is a lot of reinventing the wheel in general. In a lot of our education programs and research, we have found that groups are repeating mistakes that we have already learned from,” she says. “Another common mistake is trying to boil the ocean. We have found that groups who concentrate on doing a few things and doing them well have greater success.”

Emerging HIEs are fortunate in that they do not have to go it alone in their quest for success. They can follow the path blazed by the pioneering initiatives that defied the odds to not only survive but thrive—a path paved with 10 elements necessary for a solid foundation.

1. Stakeholder Engagement
Whether the initiative in question is a small local HIE or a multicounty regional exchange, gaining and maintaining comprehensive stakeholder engagement is imperative for long-term stability and, eventually, sustainability. That includes stakeholders that may not be active or initial participants in the exchange but will nonetheless benefit from its success.

“You have to include everyone or the value of the exchange is diminished. Alongside that, you need to establish a framework for collecting as much stakeholder input as frequently as you can,” says David L. Miller, Central Illinois HIE project lead for Quality Quest for Health of Illinois. “One key thing we’ve learned is that when you’re putting together a regional information exchange that is large and has many participants is that people can easily get lost in the mix. They lose the sense that they are getting what they want out of this. Some of that may be an emotional response or perception, but it doesn’t take much to dissuade people from spending their time and money on the initiative.”

Comprehensive stakeholder representation and engagement ensures that an HIE will offer the functionality necessary to meet community expectations right out of the gate. It also helps eliminate the competitive obstacles that have been the death of many initiatives.

“You can’t have the mentality of ‘build it and they will come.’ You have to have multistakeholder engagement, buy-in, and planning from parties all across the region, including consumer and academic,” says Tom Fritz, a National eHealth Collaborative (NeHC) board member and CEO of Inland Northwest Health Service, a 15-year-old Spokane, Wash.-based HIE. “You have to fight the fight with certain entities that it’s important to share data [with], that it’s not about competitive issues but about ensuring that … a doctor has the best information available to save a patient’s life.”

2. Stakeholder Trust
Successful HIEs are characterized by a high level of trust between an HIE and its stakeholders and among the stakeholders themselves. In particular, gaining provider and consumer trust can often be the most significant challenge but one that is imperative to overcome.

Furthermore, initiatives that are not successful at establishing trust in their security and use policies will have no data to share. No data means no value.

“The trust issue is extremely complex. You’re asking people who are competitors in a marketplace to share data about their patients. That’s scary. You really have to build trust,” says William R. Braithwaite, MD, PhD, FACMI, chief medical officer of Anakam, Inc, an Equifax company offering authentication technology. “The fact is that technology for authentication has become more understandable, more transparent, and less expensive. HIEs can implement these things and it’s not as big a deal as it used to be. When they do, it raises trust.”

3. Clearly Articulated Vision and Values
A clear and compelling vision and the ability to articulate the value it will bring to stakeholders and the community at large is credited with the survival of some of the longest-standing HIEs. That ability to convey what the HIE will do and why, in a manner that is easily understood by multiple audiences, is the first step on the path to the long-term engagement and the support necessary to achieve sustainability.

“The most important thing is that you articulate a compelling vision. The people who have been hanging in for all these years have been able to describe where they want to go and inspire with the big picture. In addition to a compelling vision, you also need a map of how to get from here to there so it doesn’t just feel like you’re spinning your wheels,” says Laura Adams, president and CEO of the Rhode Island Quality Institute (RIQI) and chair of the NeHC 2010 board of directors.

This includes clearly defining a strategy for secondary use of data, which is where much of the long-term value is derived. For example, clinical data gathered by an HIE initiative can be used for public health surveillance, medical research, quality improvement, and detecting fraud, waste, and abuse.

“Smart HIEs plan early on to integrate deidentification and aggregation of personal health information for secondary use so it can be used to significantly improve the cost and quality of healthcare within their jurisdiction; it can also be an important revenue stream for the HIE,” says Craig Miller, vice president for health innovation and strategy with Vangent.

4. Maximum Functionality
As little as two years ago, most HIEs focused on delivering one or two functions that stakeholders identified as delivering the greatest value, such as the exchange of test results or e-prescribing. Rarely were HIEs multifunctional. That is no longer the case, thanks in large part to technology advances and the track record of success more mature HIEs have established.

“Before we hit critical mass in the technology and interoperability, there was a lot of difficulty getting HIEs going, especially if they tried to bite off too much by attempting to provide full functionality right out of the gate. That’s not the case anymore,” Miller says. “Bring up as much functionality as you can right away. That helps you reach critical mass in terms of usability [by] helping people find value in participating in the HIE. You have to ‘build it and then they will come.’”

5. Adaptability and Agility
If established HIEs have learned one lesson, it is that change is constant. Whether it’s shifting stakeholder or community needs and expectations, conditions placed on funding, unexpected new opportunities, or simply rapid expansion of participants, success requires flexibility.

“Even mature initiatives are still adding functionality and providers, so it’s always growing and changing. There are new challenges and new issues cropping up all the time. Most of them are political rather than technical, but it’s very real stuff … so you have to be prepared for it,” says Miller.

Adams points to RIQI’s recent $15.9 million grant from the Beacon Communities program, receipt of a federal HIE grant, and regional extension center designation as developments that required the nine-year-old HIE to make a number of unanticipated adjustments to its business plan.

“Just about the time you think you’ve figured it out, something happens,” she says. “In the case of the federal funding, it was quite exciting but carried with it certain requirements to support meaningful use in specific ways. If [those demands] aren’t part of what the HIE is planning, there’s not much to do except comply or turn down the funding. No one really is in a position to do that … so the ability to adapt to a changing landscape is still a tremendous challenge and one that HIEs just have to get good at.”

6. The Right Technology
That ability to adapt to unexpected changes also applies to the technology an HIE ultimately deploys. Too often, the technical infrastructure is incapable of expanding with an initiative’s needs or changes to certification requirements or standards. When that happens, an HIE cannot function with the agility necessary to survive in a rapidly evolving healthcare environment.

“We’ve all been burned by bad technology, so one thing is buying a product that works,” says Fritz. “The other issue relates to the other value-add services that can be built on the system … and the ability to recognize that this is a rapidly changing field that we’re in. [The technology] has to have that ability to adapt, so you’re not getting something that is impossible to change. Flexibility and adaptability are important.”

It is also important that the technology be able to accommodate the highest levels of security and authentication, both within an HIE’s own platform and when integrated with participating systems.

“The minute you start aggregating health information on people from multiple sources, you’ve established a target for fraudsters,” says Braithwaite. “From the authentication perspective specifically, cost, flexibility, and the ability to scale to the number of people you expect to connect [are crucial]. It also has to be flexible enough to integrate with other security mechanisms. … After you put the whole package together, it is critical that they can be integrated and managed.”

Finally, HIEs need to look beyond “traditional” technologies such as EHRs, which are not sufficient on their own to deliver full functionality. Also needed are master patient indices, provider directories, enterprise document registries and repositories, audit logging, and policy engines to automate disclosure decisions.

“All of these tools require configuration and data population, and the cost and effort of this is often underestimated in HIE planning activities,” says Miller.

7. Minimum Infrastructure Costs
Particularly at start-up, successful HIEs keep a close eye on the bottom line by finding innovative ways to minimize the costs associated with developing the initial infrastructure. While this primarily relates to technical architectures, it also applies to existing administrative processes that can be leveraged to keep initial costs low.

“You can’t rely on state or federal dollars to continue to fund the initiative, so you have to look at controlling costs,” Fritz says. “You may need to be more open minded about having a vendor or existing provider host a solution. Build on something that already exists rather than creating new infrastructures. Create more of a shared asset rather than something new and unique.”

8. Recognize Milestones
Even when everything is done correctly from the outset, progress within an HIE happens slowly enough to discourage even the most ardent supporter. That is why the most effective initiatives are proactive about tooting their horns when even the smallest milestones are passed.

“It’s not a rapid race to the goal,” says Adams. “You have to celebrate process achievements, make sure they’re known so people can have a sense of accomplishment.”

9. Strong Leadership
Running an HIE requires a leader who is strong enough to steer competing factions toward consensus on everything from what functions are required and how data will be exchanged and controlled to who will participate in the various stages of growth. HIE leadership must also be able to act as cheerleader, fund-raiser, IT guru, and government liaison. It is rare to find one individual with all the necessary skills and qualities. The best initiatives find that one person who possesses the most and hires experts to fill gaps.

“Don’t underestimate the strength required of the leadership involved in this. Be sure you get someone with extraordinary strength … and then work hard to retain those leaders. Along with strength, continuity is important,” Adams notes.

10. Well-Managed Expectations
Success requires appropriately managed expectations. The HIE road is far from easy, making it important that leadership and stakeholders are aware of the level of commitment from the outset. Overpromising is an easy trap to fall into when it results in a high level of early support, but it can be fatal when expectations are not met and that support is pulled.

“The potential scope of information exchange is vast, and it’s tempting to … promise a wide range of services early in the development of an HIE,” says Miller. “Experience has shown that establishing an HIE is almost always more complex, expensive, and time consuming than initially projected. Focus on a small handful of critical exchanges … that have well-defined standards and immediate benefits to clinicians and patients.”

— Elizabeth S. Roop is a Tampa, Fla.-based freelance writer specializing in healthcare and HIT.