The pandemic laid bare critical flaws in the U.S. healthcare system, one of them being the country's struggle to efficiently manage health data at a national level. Here, CIOs from eight health systems across the country share their thoughts on how large-scale health data reporting processes can be improved.
Editor's note: Responses have been edited lightly for clarity and style.
Patrick Angel. Experienced CIO and CISO: The matter of health data reporting is critical to the future of healthcare. Unfortunately, there are no clearly defined reporting standards. HHS only provides high-level guidelines to healthcare organizations right now, and HIPAA/Health Information Technology for Economic and Clinical Health Act standards apply at the technology level and don't really address reporting. This lack of standards gives healthcare organizations the flexibility to report the data that they deem necessary, but leaves too much room for interpretation. Although all companies are working in the same field, chief experience officers' teams are different and have different perspectives.
Another part of the problem is that there is a large difference in the maturity of operations at different healthcare organizations, and some companies do not even have a consistent set of practices or a board to oversee reporting.
To further prove this point, healthcare companies are still struggling to secure their IT systems, which is why healthcare is No. 1 on the list of ransomware victims. In order to improve health data reporting at the national level, a regulatory standard that is issued and approved by a major body like HHS or the federal government is needed. Similar to Payment Card Industry Data Security Standards for technology and security, these health reporting standards will clarify the expectations and give the whole industry a "single sheet of music" to work with to tighten expectations across organizations.
Ellen Pollack, MSN, RN. Interim CIO and Chief Nursing Informatics Officer of UCLA Health (Los Angeles): There has been much investment into taking advantage of the wealth of data we have available thanks to the widespread adoption of EHRs. Through the investments made by CMS and partner organizations, we have a data framework to measure clinical quality and run clinical decision support. As a consequence of the COVID-19 pandemic, we also have more recent efforts from the CDC, through its data modernization initiative, to address gaps in interoperability and real-time reporting.
Although we are moving in the right direction, the work must continue. According the Albert Duntugan, chief data officer for UCLA Health Sciences, the investments we are making to optimize efforts related to traditional business intelligence, such as the use of common terminologies and the consistent implementation of business logic, also need to be used to support the advances we are making in predictive analytics, where transparent and well-curated concepts help to ensure responsible AI. We also need to train and develop a diverse workforce of data practitioners who can bring their wide-ranging talents and experiences to help overcome these challenges.
Michael Pfeffer, MD. CIO at Stanford Health Care (Palo Alto, Calif.): Health data reporting at the national level requires collaboration on standards and definitions between states and the federal government. Even small differences in the way measures are defined requires significant organizational work and leads to data quality challenges when aggregated at the national level. One opportunity is to focus reporting on highly impactful health domains, such as health equity, and then to expand the data requirements giving organizations a chance to work out the data gathering and submission processes. Another is to provide the aggregated data back in a timely manner, allowing health organizations to use the insights to improve clinical care and operations, and further research initiatives.
John Henderson. CIO at Children's Hospital of Orange County (Orange, Calif.): Although there are some standards from an interoperability perspective (FHIR, HL7, etc.) these do not address the core issue of many different reporting requirements at the federal, state and local levels that are not aligned and place a significant burden on each provider to meet a moving target of reporting needs.
The core areas of focus should include having minimum requirements at the federal level that states are required to follow — the 80/20 rule would be a good place to start. However, there is a dependency on the states to also have common standards for health data reporting, whether it's for pandemic-level surveillance or for more efficiently sharing health information that is meaningful for states, the federal government and patients without the burden being on the patient and/or each individual healthcare provider.
I also believe the EHR vendors have to do better. They should be required to provide the reporting integration to the federal and state systems to make health information reporting easier and more efficient. It's not enough for the EHR vendors to say "use FHIR" or "use CommonWell or CareQuality for your reporting." This does not solve the problem. It still places the burden on each health provider to make it work — which is extremely inefficient and in many cases, duplicative.
Roy Sookhoo. CIO at University of New Mexico Health Sciences Center (Albuquerque): We need legislation around data governance at the federal level to improve health data nationally. We need standardization of health data. Of course, privacy, integrity and confidentiality of data is necessary to ensure reporting with confidence.
There must be a shift in the paradigm from health systems to patients for data ownership and responsibility. Just as individuals manage their finances through a bank and/or broker, so should individuals manage their health data — those who can't should get assistance from a data broker. Then it becomes the responsibility of individuals to report their health data to a national repository.
There also needs to be a clear delineation of responsibilities between patients and health systems regarding health data. Health systems are the custodians of health and are responsible for the protection and safekeeping of the health data in their possession. The patients are the owner of the data, and they should decide and authorize health systems how their data should be shared to a national repository. There should be several standardized data formats that patients can choose to share — for example, deidentified, just demographic data, etc. Technology will have a big role in this paradigm of data ownership and sharing. Health data should be available to patients from anywhere.
Melissa Hall, MSN, RN. CIO at CalvertHealth (Prince Frederick, Md.): To improve health data reporting on a national level, there will need to be ownership established at the national level that has accountability built in so that all states and entities keep the information accurate and up to date. Pre-COVID, this was unheard of and not considered feasible by some states and organizations. Since COVID, we have proven that we can report data to a national level by utilizing different reporting methods. It will be important that we standardize the reporting methods and keep the pressure steady to ensure that all continue to report their data in a timely fashion. We have taken the initial steps and could achieve great things with data reporting if we stay the course.
James Wellman. CIO at Blanchard Valley Health System (Findlay, Ohio): I am a firm believer in the need for a national patient ID, which would give us a better chance to share the correct data every time. While some of the EHR companies have abilities for sharing between other systems using their software, it is obviously limited to their clients but it would lend itself to a national ID. We have seen some attempts to standardize data-sharing with CommonWell Health Alliance, but that is an option and not a requirement, so the concept would gain more support in creating a standard that would be implemented across all systems with a singular ID.
Local, regional and statewide health information exchanges use yet another standard, or even several depending on the location. Healthcare systems are often forced to decide which standard they will support due to cost, or if it is government-mandated for their location, that decision is made for them and it may not always be the best choice.The result is often a fractured record with repetitive overlap due to the competing processes.
Healthcare IT needs to select a single unifying solution that crosses over all of the other options and do what is right for the patient, and reduce cost on the backend support chasing down records and deduplicating data coming in and going out. A patient and/or their families should be able to see all of their respective medical information in a single location and they should feel confident that clinicians can see this same information when making medical decisions.
Randy Davis. CIO at CGH Medical Center (Sterling, Ill.): Hospitals and hospital systems function as islands. We each think we do things better than the next hospital. Just look at vendors at HIMSS — hospitals use solutions from a sea of vendors. So if we truly want to improve, transparently, reporting on a national level, the 800-pound gorilla is needed. And there is only one of them right now: the federal lawmaking or regulatory rulemaking process. That's the only way I know of to force all vendors associated with health data to report consistently. Of course that process is like making sausage, oftentimes leaving us with an end result that looks nothing like the original objective.
Have no illusions this is not already happening. Google "MarketScan" and be prepared to be amazed. Health data being collected on 270 million Americans is clearly significant. Others like MarketScan exist. If there is a free-market need for this data, the market always finds a way. And it is doing just that, whether we're aware of it or not. So it's quite possible no change needs to be made to collect data. Just know if the free market is collecting it, there will be a fee involved to use it.