Patient registries are evolving from static data repositories to become valuable sources of real world evidence (RWE), which is increasingly important to stakeholders across healthcare. This evolution is being driven by technological advances that overcome long-standing limitations of traditional registries to provide a greater depth and breadth of RWE.
Mobile, remote and home health services can make collection of patient data and samples easier by meeting patients where they are. Wearable devices can collect more extensive longitudinal sensor data passively, without burdening patients or sites. Artificial intelligence (AI) can optimise the entire data journey, from automating collection to unearthing operational and patient insights that otherwise wouldn鈥檛 be discerned.
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The transformation of patient registries is also happening in response to shifts in healthcare, including demands for more robust and representative patient data, identification and treatment of more rare or complex disorders, growing regulatory demand for RWE, and rising expectations to capture the patient voice and deliver patient-centered outcomes.
Technology-enabled registries can help organisations address these demands by improving how they collect, access and generate RWE.
Expanding the value of patient registries
Patient registries, which collect and aggregate de-identified real world patient data around a specific disease or treatment of interest, are often limited by the scope and volume of data they can collect across patients, geographies and time. This often impacts the generalisability and quality of research that can be performed.
For example, registry studies have historically relied on manual entry of patient medical records into data collection forms. This process can be time consuming, expensive, difficult to scale and lack congruency with standard clinical care workflows. Patient data has also become fragmented across various systems and providers, so information in registries obtained from a single provider, health system or data source may be incomplete. In addition, barriers such as the need for site visits sometimes prevent patients from participating in clinical studies.
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By GlobalDataToday, the convergence of AI, digital health tools and data interoperability standards is changing this, enabling registries to collect more high-quality data with lower stakeholder burden. This is transforming registries into strategic assets that can improve analysis and decision-making across healthcare.
A good starting point for organisations to enhance their patient registries is to consider their strategic and scientific needs. By identifying knowledge gaps and areas where they can reduce stakeholder burdens, they can evaluate how technology can best support their goals.
Some opportunities for improvement that organisations should consider include:
Reducing data collection burden
A variety of technological advances are transforming how patient registries can collect data to ease burdens on patients, providers and site staff. This enables organisations to generate more complete data sets and expand RWE creation.
For example, technology can be integrated into existing workflows to streamline data collection. Structured fields in electronic health records (EHR) data can be processed and directly integrated and mapped into study databases. Beyond that, AI-enabled natural language processing (NLP) can extract relevant fields and variables from unstructured text in clinical notes, reports and other sources and then populate and pre-populate form fields for registries.
This combination can reduce or potentially eliminate data entry tasks for physicians or site personnel, significantly reducing site burden, but human review is still necessary to confirm accuracy. AI-supported solutions have enabled much faster and more robust data collection without compromising quality by keeping a 鈥渉uman-in-the-loop鈥�.
For patients, decentralised data collection makes the process less cumbersome and increases the likelihood that they participate and stay engaged in longer-term registries. Patients can use mobile apps to complete clinical outcome assessments, surveys and questionnaires when and where it鈥檚 convenient for them. Passive data collection via wearables and other devices also minimises participant effort while capturing more objective sensor data that, when combined with active survey data, can provide a more comprehensive view of patient experiences and outcomes.
This can position long-term studies for success and improve the representation of diverse patient populations in studies.
Creating a greater depth of data
Even with quality checks in place, patient registries today are limited by the availability of accurate structured data. Modern technologies can help provide quality-checked data to create richer, more multidimensional patient records for more robust RWE.
Patient-mediated access to EHR and claims data is becoming available in more parts of the world, while advancements in interoperability standards (e.g., Fast Healthcare Interoperability Resources/FHIR) are enabling registries to easily access, harmonise and integrate patient medical records across health systems. This allows registries to compile a more complete picture of patient medical records, while protecting patient privacy.
Meanwhile, wearables and medical devices can provide a deeper layer of granularity to patient records. Their ability to track a wide range of patient variables 鈥� such as sleep, activity, stress levels and glucose levels 鈥� can create continuous data streams about patients鈥� health between their visits to a provider. This can provide new insights into the role of lifestyle factors on outcomes.
Looking to the near future, digital health technologies and AI have the potential to revolutionise the capture and processing of data for registries. For example, they can be used to automate clinical documentation and chart abstraction. They can also potentially glean insights from clinical notes that could otherwise be unused if not properly formatted for inclusion in the registry. Additionally, ambient AI tools could soon be used to capture dialogue between patients and healthcare providers, potentially capturing additional details that may otherwise not be recorded.
Expanding insights from data
Simplified data collection and deeper data sets inherently expand the insights that can be gathered from patient registries. Technology can play a crucial role in helping healthcare stakeholders make sense of this richer registry data and turn it into RWE that can enhance decision making across healthcare stakeholders.
AI is becoming central to this shift. AI-powered data analysis, powered by large language models (LLMs), can evaluate the entire patient journey and treatment or clinical management of diseases for thousands of patients at once. By spotting associations in data that may be too intricate for even experienced professionals to see, AI can even enable shifts like the use of predictive interventions and support models.
For example, AI analysis of registry data has been used to forecast asthma exacerbations, enabling pre-emptive or more aggressive care interventions that can prevent asthma cases from getting worse or requiring hospitalisation. Similar opportunities exist to enhance cardiology, immunology and renal care.
While optimising care for every patient is priority number one, robust analysis of deep datasets also enables much more in healthcare. It can provide new insights into population-level disease trends, help inform policy decisions and enable studies to reflect more heterogeneous patient experiences.
A foundation for better care
Patient registries are becoming adaptable platforms that generate insights at a dynamic pace. Technology is enabling this shift, reducing data collection burdens while expanding the depth of registry data and the insights that can be learned from it. The resulting RWE can enhance decision making across the healthcare spectrum and ultimately improve patients鈥� lives.
By ensuring strategic and scientific needs align with this evolution, organisations can make registries indispensable sources of RWE that support the needs and interests of all healthcare stakeholders.
