When it comes to the digital transformation of healthcare, the COVID-19 pandemic has really only exacerbated and accelerated underlying trends. As healthcare has become more and more data driven, one thing has become clear: organizations increasingly require data beyond what is traditionally captured for quality improvement and better health outcomes. What we’ve seen is that traditional registries are inadequate for managing the multiple dimensions of health data that are becoming so important to healthcare improvement initiatives. Below, we’ll take a look at what the next generation of registries require and what they should look like.

The Problem with Traditional Registries

Traditional registries are very good at measuring the specific thing that they were set out to achieve such as connecting to an Electronic Health Record (EHR) and reporting. But, they don’t work well with multiple dimensions of data. They also don’t scale to collect new data—allowing for any new information that you’d like to collect that has become relevant to delivering great care.

The conclusion: registries as we currently know them may not be viable for the long term. However, there’s growing opportunity for innovative strategies and systems that will allow for collection, curation and analysis of the data needed to deliver great care.

Move from Retrospective Data to Real-time Integration with Patient Data

In the new digital language of healthcare, we need to bring care to patients where they are. “Patient-centered” care is increasingly becoming “patient-driven” care. Telehealth and digital phenotyping are not fads, they’re here to stay. The pandemic gave these trends a nudge to become more mainstream, but the reality is that they’ve been increasing in popularity for years. And these new modes of health monitoring and health interactions produce different kinds of data than traditional registries can handle.

In line with this, direct-to-patient studies that allow organizations to create compelling engagement strategies are going to become more and more commonplace.

Multi-Modal Data Collection

As we move more and more into real-time data integration, a multimodal approach to data collection across clinical and IT settings will be necessary for registries to be successful. The next gen registry should support a variety of approaches to data collection and interaction, including web, mobile, tablet, and integrated hybrid. Legacy methods that include things like case report forms (CRF) offering data collection, chart abstraction, and data uploading, have run up against many barriers over time. The cost, the lack of access, the heavy provider participation that’s required, and the burden overload of physician chart abstracters have all made this process less efficient. We’re never going to get away from chart abstraction, but the days of it being the core methodology for collecting data are long gone.

Access More and Varied Data Streams

In line with the above two recommendations, a contemporary registry should allow an organization to acquire a wide variety of health data, including social determinants, as well as retrospective and prospective EHR data. Many patient advocacy and life sciences organizations are already doing this. They’re moving beyond just a traditional site-based orientation, and moving into many methodologies including direct patient follow ups through a lot of connections with health systems. This allows for dynamic data capture and can follow the patient journey from start to finish. This integrated data can reduce the burden on data collection, and also be leveraged and integrated with the EHR to drive useful insight, next best action and even clinical decision support.

Organizational Changes to Control Your Own Data

Data management, quality, integration, and analytics should be critical core competencies for healthcare nonprofits; they should not become beholden to a vendor. Organizations should stop outsourcing all the data expertise to third parties. They need to be wary of falling for too-good-to- be-true monetization schemes and exchanging their data rights for lower responsibility or registry costs. In the long run, this is a very poor trade.

Instead, organizations should partner with those who appreciate that it’s essential for the organization to control its own fate—and the member data with which they were entrusted. They need to acquire the skill sets needed within their organization to work with data. These skills are now critical core competencies for almost any nonprofit in the healthcare space. With firmer control over and greater understanding of their data, steps should be taken to bolster data provenance, reduce duplication, and storing information in a single place with all the brokerage and governance rules.

Embrace HL7 FHIR

The 21st Century Cures Act, signed into law in December 2016, defined interoperability and prohibited information blocking in the healthcare industry. The Act also mandated the use of Fast Healthcare Interoperability Resources (FHIR). The update to the Cures Act in March 2020, details FHIR-based Health IT interoperability requirements and exceptions to information blocking.

There’s a reason why the office of the National Coordinator for Health IT took the bold step of adopting the standard and mandating it. FHIR provides a much better user experience with easy to configure and understand dashboards. It also allows the ability to contribute to the broader health system by gathering information nationally to inform clinical and shared decision-making.

What’s Next? The Integrated Health Platform

So if not traditional registries, what are the new and better ways to gather disparate health data that provides real, actionable health information? What today’s health organizations need is a dynamic modular platform that offers integration and a holistic experience to patients, providers and platform users alike. The IQVIA Integrated Platform (IHP) allows for easy integration of usable real-world data across clinical and IT settings. IHP enables retrospective and prospective EMR data acquisition in both traditional site-based and direct-to-patient follow-up scenarios.

Both HL7 transactions and FHIR transactions integrate with IHP. Plus, the FHIR data sets are expandable through negotiation with sites through our partnered network and a lot of our frameworks. So, the core set can be expanded to elements that are critical to an organization’s specific registry needs, research needs or project.3

We can also extend the value of that data by adding natural language processing (NLP) into the framework. This gives organizations the ability to really drive insight from a lot of the unstructured notes and narratives that would otherwise be lost in the medical record. This information is traditionally lost in classic methods, or requires a lot of effort in heavy transcription, or trying to decipher information from imported documents such as PDFs.

One immensely useful feature of IHP is that it allows not only capture standardization of data, but also allows the ability to capture data once and reuse it infinitely. Historically, a lot of institutions will build multiple registries and have to collect and recollect data. With IHP, once captured, data can be used for future studies, saving organizations added burdens, time and money.

Currently, what healthcare organizations need to improve care is beyond what traditional registries can provide. If we can’t truly understand what great care looks like, what efficient care looks like, what cost-effective care looks then, we can’t be sure that we are delivering great care. What’s needed are platforms that allow access to, use and analysis of a huge, rich compendium of data that gives a much more longitudinal view of patient experience through a variety of traditional and new types of data, including social determinants, living conditions, and all the other things that impact care.

More Resources for Medical Societies

More Resources for Patient Advocacy Organizations