For more than 20 years, the American Public Health Association (APHA) has organized National Public Health Week (NPHW). The 2016 NPHW campaign is: “Healthiest Nation 2030.” It’s a goal we support, but it’s not likely to happen.

I am an optimist about the power of health IT to improve the health of the population. But it shouldn’t surprise you that as a practicing physician, the chief medical officer for NextGen Healthcare, and the Vice Chair of the Executive Committee of the Electronic Health Record Association (EHRA), I’m empirically driven too.

The numbers…

So… regarding NPHW’s 2016 campaign – “Healthiest Nation 2030” – we don’t have the numbers to suggest this is possible. Our current national health, culture, and socioeconomic trend data doesn’t support a path to reaching the 2030 goal. Our country’s diversity alone, as a population health management issue, creates significant challenges. This diversity affects risk factors, responses to treatment, and patient engagement strategies.

The NPHW campaign is more about having an aspirational goal and better direction for the nation versus being a clearly achievable goal. I appreciate that. But the campaign raises a combination of population health and healthcare data management challenges that we must address so that we can optimize our healthcare system.

Expanding sources of public health agency data

There has been rapid growth in the availability of standardized patient treatment protocols such as those which have been developed for the Million Hearts Program. When followed, these have the potential to reduce disparities in providing evidence-based care. EHRs are incorporating these protocols and physicians are now collecting structured data that can be exported to registries. This provides more uniform data sets across the disease management spectrum, which public health agencies and researchers can analyze to refine treatment protocols, based on actual outcomes. The data allows for creation of more-reliable predictive models.

A limited subset of this information, mostly provided by labs, emergency departments, and hospitals, comprises the bulk of the data public health agencies receive today. The expansion of registries will increase the data available to these researchers exponentially, but it is still traditional medical data. It is the advent of promising new data types and sources that go well beyond traditional channels that might speed our progress to “Healthiest Nation 2030.”

The future of health data is precision

Personalized genetic data from which precision medicine initiatives are evolving is likely to change the way that research is done, treatments and protocols are created, and new drugs are developed. Direct-to-consumer projects, such as 23andMe, have created new, individualized, patient data sources. On the academic and research institution front, Apple just announced a new module created by 23andMe for the Apple ResearchKit platform that will make it easier to use genetic data, enabling research on a much broader scale.

The federal government also is interested in precision medicine. Launched with a $215 million investment, President Obama’s Precision Medicine Initiative (PMI) has the potential to create vast new data streams of genetic, environmental, and lifestyle patient data. The research mandate for this initiative will be led by the PMI Cohort Program:

The PMI Cohort Program will be a participant-engaged, data-driven enterprise supporting research at the intersection of human biology, behavior, genetics, environment, data science and computation, and much more to produce new knowledge with the goal of developing more effective ways to prolong health and treat disease.

You can see by the program’s description, never-before-imagined volumes of heterogeneous data will be produced and will require sharing and analysis. It’s the data sharing relationships from initiatives such as these where information security remains a concern.

Protections are in place… but…

Although established laws are in place to protect personal health information such as the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA), in the broad sense, our industry has not been creating precision medicine data streams for a long time. As the PMI Cohort Program asserts: “While some advances in precision medicine have been made, the practice is not currently in use for most diseases.”

Among the “newer” data types public health agencies are more likely to receive and leverage today, is de-identified protected health information (PHI). Less than a year ago, the National Institute of Standards and Technology published a report – “De-Identification of Personal Information” – that included both policy issues and technical issues in the de-identification of data. The practice of de-identifying patient data has been formalized and guidance is available here from the U.S. Department of Health & Human Services (HHS). Demand for this type of de-identified PHI has steadily increased along with our appetite to create better clinical outcomes using analytics.

Standards: The real data issue for public health agencies

Reality check: Public health agencies don’t have the technology infrastructure or personnel to leverage new sources of PHI. Public health agencies need more funding to adopt interoperable software technologies developed with data standards that enable agencies to receive patient data from different systems. [You can take action right now to support the funding of public health agencies. Go here and the APHA shows you how.]

With better funding and supporting existing standards, we could expect to see gains for population health. An example would be if the Centers for Disease Control (CDC) were to make their travel guidance by country accessible via the infobutton standard or an application protocol interface (API) so that vendors could incorporate links within their products. This would allow EHR users access to the most current information about diseases such as Ebola or Zika without requiring software updates.

Industry: What we are doing to support interoperability

The electronic health record (EHR) industry is working to solve the interoperability challenge through the highest levels of collaboration ever experienced in our sector. EHR vendors want to make it easier for providers to use their systems and for organizations, including public health agencies, to send and receive information from disparate systems. The EHRA is helping guide this high level of industry collaboration through the EHRA standards and interoperability work group.

The lack of a unique patient identifier is a barrier yet to be addressed in sharing data across the care continuum. The CHIME National Patient ID Challenge, sponsored by the College of Healthcare Information Management Executives (CHIME), is a million-dollar challenge now underway to solve this issue.  On the nontechnical front, the EHRA has been working to reduce the barriers to interoperability due to business drivers. At HIMSS16 in Chicago, the EHRA announced v2 of the EHR Developer Code of Conduct* which obligates signatories to not block the flow of patient data between disparate systems, care settings, providers, and other patient designated recipients of PHI.

*I’ll summarize the content and impact of “version 2” of the EHR Developer Code of Conduct in my next blog entry.

The path forward for improving public health

Most public health agencies are not well equipped to accept the full set of available structured data electronically, using current standards that are required of EHR vendors for certification. A lot of public health reporting is instead accomplished through “one-off” applications and interfaces and not a comprehensive, integrated approach that follows an agreed upon set of national health data standards.

What we are likely to see is the private sector taking up some of the slack to provide data about our populations. In particular, an explosion of medical registries by medical societies is underway. They will become important sources of specialized medical data on our populations. I expect that researchers will make increasing use of this registry data as it grows and provides a more robust set of longitudinal data.

These issues highlight our nation’s broad challenge in bringing both private and public stakeholders together in collaborative, interoperable data creation and sharing frameworks. That’s the broad goal. And that’s a capability we’ll have to have, for any chance to become “Healthiest Nation 2030” like APHA is urging us to do during National Public Health Awareness week.


A few quick resources you may find useful: