Over the past year, as the majority of communities developing health information exchanges struggle to make progress (with a few failing outright), health record banks (HRBs) have received increasing attention as a model for successful community health information infrastructure (HII). There is a growing realization that other approaches do NOT solve the critical problems of HII that are addressed by HRBs, namely,
In addition to the previously cited independent report endorsing health record banking in October, 2007, from the Information Technology and Innovation Foundation, a new study released last week by the California Health Care Foundation, Gauging the Progress of the National Health Information Technology Initiative, declared that the current approach to HII that envisions a “network of networks” known as the Nationwide Health Information Network (NHIN) is “impractical and cannot be implemented.”
As a result, more communities are pursuing the development of HRBs. The State of Oregon recently received a $5.5 million Medicaid Transformation Grant from CMS (Centers for Medicare and Medicaid Services) to create the Health Record Bank of Oregon. The State of Arizona, also the recipient of a Medicaid Transformation Grant, is taking a close look at the HRB model. The State of New Jersey just enacted legislation creating the New Jersey Health Information Technology Commission, which is tasked to create “The Health Information Bank of New Jersey.” The State of Mississippi is evaluating the HRB approach. Greater Louisville (KY) and the State of Washington, among the earliest adopters the health record banking approach, are both continuing their efforts to build effective HRBs. (comments from readers on additional HRB activity would be welcome!)
In a further sign of the acceptance of the HRB approach, a recent RFP from the National Governors Association’s State e-Health Alliance requesting bids on a research project to develop recommendations for potential governance and business models for HII specifically included health record banking as one approach to be evaluated.
So isn’t this all good news for health record banking? Yes … and no. Of course, those of us who have been promoting the advantages of this approach over the past several years are pleased to see more widespread awareness and adoption. The Health Record Banking Alliance, formed in 2006 to bring together folks interested in HRBs, is growing. However, as often happens with new ideas, popularity can lead to misunderstanding as more people embrace the model without fully appreciating all of its implications.
The fact is that developing HII, even with the HRB approach, remains a complex and difficult problem. Issues of organization, governance, policy, stakeholder cooperation, marketing, financial sustainability, public trust, and technology must all be addressed simultaneously. Furthermore, having a financial strategy for maintaining an HRB does not automatically guarantee an easy financial path for STARTING one. For example, it is relatively easy to envision how a company like Federal Express can be a sustainable, ongoing concern once its infrastructure and customer base is established over a wide geographic area. But building FedEx from a new startup organization to that point remains one of the great business achievements in recent memory.
The most common mistake now being made by new HRB enthusiasts is to consider a health record bank to be purely an IT project. While the technology is clearly important and non-trivial, existing techniques and methods are more than sufficient to handle the job. Indeed, most of the component technology pieces that constitute an HRB, such as Personal Health Record (PHR) interfaces, consent management systems, and health information repositories, already exist and, in many cases, are in routine production at many sites.
What does not exist is the organizational, governance, marketing, and financial mechanisms to support the technology — and these are the difficult challenges. This is best illustrated by imagining the scenario of a community that was successful in building the perfect technical infrastructure for an HRB. Let us assume such an HRB functioned ideally in every respect — it could accept deposits of any arbitrary medical data using any reasonable data format or standard, provided easy-to-use interfaces for both consumers and providers enabling consumer control of exactly what is accessible by whom, had state-of-the-art security protections, could automatically generate relevant reminders to consumers and providers, and was implemented in a high-reliability system environment that guaranteed nearly 100% availability around the clock.
Would such an HRB be useful? Not at all, because it has NO DATA. Furthermore, it has NO USERS. Also, it has NO FINANCIAL SUSTAINABILITY and NO GOVERNANCE. Without addressing the questions of how the data ACTUALLY gets in (as opposed to whether it CAN be deposited), how patients and providers are successfully encouraged to USE the system, and how it will be GOVERNED and PAID FOR, all the fabulous technical capabilities of this “perfect” HRB have no value whatsoever.
Therefore, the strategy of issuing an RFP to “build a health record bank” is highly unlikely to succeed, particularly if directed to health IT vendors. Building the IT infrastructure for an HRB is essential, and doing it right is extremely important. But it is truly the LEAST difficult problem to be solved on the road to successful HRBs. To succeed in creating a truly effective and sustainable HRB, close attention must be focused on acquiring data and encouraging usage within an organizational framework that provides trusted governance, and developing and deploying a business model that can reliably generate the revenue needed for ongoing operations. Simply building the IT system alone is not nearly enough.