In today's healthcare landscape, the demand for clinically rich data and real-world evidence (RWE) is accelerating. This information is pivotal for therapeutic developments, influencing regulatory decisions, and directly addressing unmet needs within patient populations. Compounded with the empowerment driven by legislative measures like the 21^st Century Cures Act, patients are also leveraging modern technologies and wearables for greater sharing of their information with healthcare providers and researchers as well as better understanding their health journeys.

This presents a unique opportunity for patient organizations to embrace innovation through effective collection, curation, and sharing of data. Positioned as trusted data stewards, these organizations are uniquely equipped to bridge the gap between historically fragmented data sources through the utilization of connected data. This will act as a catalyst for groundbreaking research advancements and optimal care outcomes for patient communities.

The role of connected data in patient advancements

Data generated from every interaction point throughout the healthcare continuum holds immense potential for understanding patients holistically. However, these interactions often result in fragmented data streams. By connecting these disparate data streams through the application of non-identified tokens that protect patient privacy, a comprehensive and unified view of the patient can be achieved. This integration creates valuable opportunities for in-depth patient analytics and insights, enabling healthcare professionals (HCPs) to gain a deeper understanding of individual patients and make more informed decisions regarding their care. It also supports the organization’s ability to determine their own impact on their patients with respect to outcomes and their journey through the healthcare system.

Obtain a better understanding of the patients’ journeys

When examining non-identified data sources such as pharmacy data or medical claims data with pre-adjudicated and adjudicated rates, valuable insights can be gathered about the costs associated with specific diseases and the access patients have to necessary treatments. By analyzing this data, we can gain a sense of the expenses incurred by patients and assess whether they receive adequate follow-up care. This assessment includes evaluating both medical and prescription adherence, which can serve as indicators of potential access issues faced by these patients.

Identifying such issues becomes even more crucial when studying patients with rare diseases, as conventional data sources like medical and pharmacy claims may not provide sufficient information. Validating current data, in these cases, comparing registry data and external sources, can potentially offer alternative markers for analysis.

Enhancing initiatives for increased external support

Patient organizations have unparalleled insight into the lived experiences of patients and caregivers, which is a perspective that is often missed by traditional data sources such as medical claims and electronic health records. By broadening the accessibility of non-identified patient data that ensures strict adherence to governance guidelines, these organizations can develop initiatives that will attract significant interest from external stakeholders, such as life science companies and academic research institutions.

Moreover, patient organizations can harness the potential of connected non-identified datasets or the integration of various data sources to unlock groundbreaking research studies that were previously unattainable through traditional, fragmented data assets. This strategy will allow organizations to establish valuable partners for stakeholders interested in advancing precision medicine, addressing disparities in therapeutic developments, and gaining regulatory approval.

Key considerations before connecting data

It is essential to determine whether the necessary information for connection and integration is even possible based on the kinds of data to which the organization has access and if there is consent. This includes capturing patient-level data that can be utilized once it is rendered non-identifiable. Another aspect is obtaining explicit consent from patients to utilize their data. For example, when building a registry, it is important to ensure that appropriate measures are in place to protect patients and enable compliant and appropriate use of the data for downstream applications.

Organizations should also conduct an overlap analysis to assess the presence of shared/matched patients across different datasets (on a non-identified basis). It is worth exploring whether the non-identified patients within the patient organization data, registry data, or survey data also appear in third-party sources such as medical claims and pharmacy data. If such overlap exists, it presents a significant opportunity and value in establishing links between these datasets.

On the other hand, if there is no substantial overlap, it does not necessarily imply a lack of value. Instead, it may indicate a greater potential for rare diseases, where partnerships with smaller overlaps become particularly intriguing. It is worth considering a partner that can help the organization understand how to use the necessary data transformations driven by privacy rules and support them in delivering the combined dataset to the broader healthcare industry.

While examining internal initiatives, it is also important for organizations to identify any gaps in their existing data. This presents an opportunity to leverage connected datasets that can fill those gaps. Having a clear understanding of these gaps can guide the organization in determining which specific data types would be more interesting to the organization.

Utilization of real-world data (RWD) marketplaces for connected data

RWD marketplaces enable the brokering of third-party, RWD and connections to traditional, syndicated data such as from medical claims, pharmacy claims, and EMR data for use by the broader healthcare industry. To ensure compliance, IQVIA’s RWD marketplaces are governed by supplier-determined permissible use and privacy best practices through the use of re-identification risk determinations. By connecting this data with patient organization data, including survey data, registry data, and other social determinants of health (SDOH) data, healthcare stakeholders like pharmaceutical companies, medical technology firms, biotech companies, government payers, and providers gain access to comprehensive connected datasets. These datasets allow stakeholders to construct patient cohorts, conduct studies, and utilize the data for various purposes.

One notable best practice for utilizing RWD marketplaces is that the patient organization maintains control over data usage. This means that the organization can specify whether the data is solely used for research, health economics and outcomes research (HEOR), patient recruitment for clinical trials, or even for commercial purposes. This level of control empowers patient organizations, ensuring that data usage aligns with their mission and vision and determining the types of studies/engagements in which the data can be made available.

To bring the concept of a RWD marketplace to life, governance frameworks play a crucial role, ensuring expert determination of data intake, connection to other data, and necessary data transformations to comply with local, state, and federal guidelines. The data is rendered non-identifiable to the HIPAA Expert Determination standard.

Once the data is non-identified, tokens applied and re-identification risk mitigated, data management becomes essential. Data deduplication, cleansing and potentially master data management are conducted to enhance data quality. This prepares the data for utilization by applying analytical reporting layers and formatting it for downstream purposes. Making the data available within a RWD marketplace is the final step, so that it can be leveraged by the broader stakeholder community, including medical research, HEOR, and commercial purposes as determined by the patient organization. In doing so, an organization can increase business sustainability by providing value to a larger group of stakeholders and expand the reach of their involvement in initiatives that will have the greatest impact for patients.

Example use-case of the benefits of connected data

In the context of a brain injury organization seeking to link their survey or registry data with pharmacy claims, medical claims, and SDOH data, several potential outcomes could be observed. Firstly, this linkage presents an opportunity for the organization to validate their data and identify best practices for post-injury or post-surgery patient care pathways. By analyzing the connected dataset, indicators of improved quality of life and the journey towards normalcy can be revealed, which is challenging to quantify using traditional claims data alone. The combination of survey information and registry data has the potential to make a significant difference in understanding patient outcomes.

Furthermore, the connected dataset can uncover positive outcomes related to specific physical and cognitive therapies, leading to further research opportunities, or expanded utilization of the organization's data. It can also shed light on comorbidities in brain injury patients and assess the effectiveness of different therapy approaches. Overall, the connection between the organization's data and industry stakeholders (e.g., life sciences, MedTech, healthcare payers and providers, researchers, and government) can have a positive impact on clinical trials, patient criteria, treatment outcomes, the development of new therapies, and potentially even attract increased funding for both the disease area and the organization itself. This outcome benefits patients, patient organizations, industry partners, and the healthcare system as a whole, creating a win-win situation.

Moving forward in the expanded data landscape

As highlighted above, patient organizations uniquely hold a pivotal position within the healthcare ecosystem due to their repository of detailed, patient-centric data that offers a holistic view of the patients’ journey. As patient organizations broaden the accessibility of this invaluable information, while upholding strict governance and privacy standards, they not only attract external stakeholder interest but also unlock opportunities for innovative research and deeper patient insights.

By cohesively bridging the gaps between disparate datasets, the entire healthcare continuum benefits from a richer, more comprehensive understanding of patient experiences and needs. The added value of such integrations is evident, particularly the insights it can offer for rare diseases and precision medicine, from therapeutic developments to assessing treatment outcomes. But the journey to harnessing the full potential of connected data requires meticulous planning, strategic partnerships, and unwavering dedication to patient privacy and data integrity.

In the continuously evolving healthcare landscape, connected data has the potential to foster robust collaborations between patient organizations, research institutions, and the wider healthcare industry. With the utilization of integrated data, we are on the cusp of a transformative phase in patient care and medical research, characterized by cooperative efforts, groundbreaking innovations, and a steadfast dedication to optimizing patient outcomes.

About IQVIA and our role supporting patient organizations

IQVIA’s goal in working with patient organizations is to empower these organizations to accelerate advancements to improve patient outcomes and quality of life. Through comprehensive, tailored advisory support, technology and data solutions, and long-term strategies, we enable our customers to achieve their organizational health data and treatment outcome goals.

Please contact us to learn more at pr-contact@iqvia.com