And The Sea Shall Grant Each Man New Hope

“When exploring uncharted waters or embarking on a great adventure often the final destination is not necessarily that which was first envisioned. An adventure, by definition is a venture or gamble. Christopher Columbus did not expect to discover a new world; his intended adventure upon embarkation is not why he is remembered today. The same can be said about our great undertaking, the creation of a Health Information Exchange. While we diligently navigate the uncharted waters of this young technology we must always be mindful of recurring question”.(1)

Having launched the First community HIE in New Jersey, I have been asked over the past year, by many individuals and groups about LESSONS LEARNED. The funny part is people seem to be asking the wrong questions. As you can imagine the first questions are always: “What has been the greatest challenge? , What are you doing about sustainability, How are you handling privacy?” , and my personal favorite “What is the projected ROI?

I though perhaps I would share my responses and assemble a primer of the simple stuff from which to get started. So here it is:

Q. What are the three most important factors for an end-user to examine when considering the implementation of an HIE?

A. Governance Model, Sustainability Model, and Privacy Model. These elements by the way are the also the most common reason HIE ‘s fail so working them up front is the right think to do. In New Jersey we are at a transition point. Several of us have started to setup regional HIE as a preliminary step for a state exchange. This effort is being funded by ONC through the state. Ipso Facto we are looking at a federated model which is more like a utility. Individually owned but regulated by the state. We are planning that the state provide a common transport backbone as well as a record locator service, and then the exchange of clinical and treatment information will happen mostly within the regions (as it will) but available anywhere in the state when necessary. We still need to build a robust governance model, although all of us have regional governance models in place that work for our community.

Privacy is actually less of a challenge in many ways. As a state we have taken and OPT- OUT model which means you’re in it until you opt out. The challenge here is that all of the privacy regulations in New Jersey are less then coordinated and vary depending on what type of agency or organization you are. For example privacy requirements for hospitals are different from privacy requirement of social agencies, and different still than some outpatient and ancillary services. It does present some challenges. A legislative solution that consolidated the entire version spectrum would be nice, but it is not a show stopper, at least at the beginning.

Sustainability is still a work in progress. We are looking at some legislative changes to impose a per claim charge to fund the HIE effort; however this is not yet resolved. We have looked models which charge the hospital and physicians (not desirable as they most likely won’t pay) to running ads, marketing de-indentified summary data and the like. We are confident that this will be resolved prior to going live state wide.

Q. How hard has it been working with your vendors for data exchange?

This has been the single hardest part of all the work we did. Getting data out of some legacy systems is hard, getting data out of physician practice EMR’s is even harder.

We selected several practice management and EMR solutions to offer our physicians. Although we identified the data elements we wanted to share we had an “oops” and did not clearly identify how we wanted that data shared. As a result one of my vendors has made it almost impossible for me to get the data I want without buying there proprietary HIE solution. We are still trying to work through that obstacle. My other vendors have been more cooperative and data is moving back and forth nicely. We also added several reference Laboratories and pharmacy clearing houses providing a significant amount of data to our docs. Lesson learned: negotiate not only the data but the transport model early on.

Q. How about table maintenance; does it require a large effort?

In an ideal system, all identifying characteristics; be they laboratory codes, patient record numbers, or physician identifiers would be standardized and unchanging. This premise, central to the initial vision of the HIE, we discover is the false conclusion of an idealist. The reality of the system, we learn, is an ever changing entity in a state of perpetual growth. Table maintenance is a large unruly and a primary necessity to keep the data flowing. This type of “data factory work” is often underestimated. No mater how clean your data is there will always be a need to manage the rejections. This is the cost of normalizing data.

Q. What is the projected ROI and what are the benefits to the patient?

I do not believe that an HIE is about a return on investment that can be measured in money. The Quest of an HIE is about quality, safety and redefining the means by which healthcare is delivered. There are specific value propositions. For example the patient has a more coherent and comprehensive encounter with a clinician who has current information at the point of care yielding higher quality and safety.

For the providers it is the ability to have accurate information when treating and performance information about the practice for PQRI and pay for performance monitoring. A HIE can be your best friend is pulling this information together based on clinical information as opposed to claim data. For the first time the provider has ammunition with which to deal with payers and regulatory agencies.

For the health system it is a means of tighter physician alignment as well the ability to drive profitable procedures to your organizations and the preparation for ACO work. Imagine how you are going to monitor “accountable care” without and electronic interface and the ability to extract and mine data. In addition a connected community of providers can have access to best practice and optimal care plansn raising overall performance and satisification.

For the payer and the community a tool to monitor the health of populations, disease surveillance, disease management and the formation of medical homes to help control cost and improve quality. We must look at all the above and more when asked about ROI.

Q Why did you start and HIE?

This is the right question because an HIE is about quality, safety, and changing the model by which we access healthcare in the United States. Access to comprehensive clinical data sets the stage for improving the level of service we all encounter when we seek healthcare. It is the foundation tool which will allow each of us to become a participant in our care as opposed to passive recipients. It is about making my care personal, portable, timely and meaningful. It is about control. I have written previously on this and I ask each of you to think about how this technology can help plot a course for the undiscovered country on a new map of healthcare delivery. Ideas anyone?

(1) quoted with permission M.Morreale 2010