Advocacy groups and how patient data can help drive health equity

How can better use of patient data improve health equity? Adam Mariano, Esq., MSPH, Senior Director, Product and Strategy, Integrated Health Practice at IQVIA, talks with Evidence-based oncology ^TM (EBO) how the landscape in data ownership allows greater use of data from groups historically underrepresented in clinical trials. Changes in the law of healing in the 21st century¹ and patient access regulation² Creating an important role for patient organizations, Mariano said.

EBO: What is the role of patient organizations in accessing information?

Mariano: The shift in data ownership in the United States through the Cures Act and the Patient Access Regulation provides a real opportunity for patient organizations to educate patients about their access rights, provide context for raw health data, and create clear pathways for patients. Use this information in their care. Plain-language explanations of electronic medical record information components, services, and advocacy support and training in accessing and accessing information are all critical.

EBO: How can patient organizations play a role in gathering data from underrepresented populations in clinical trials?

Mariano: Patient organizations can act as patient advocates for underserved and historically marginalized populations, from education and access support to educating patients about their rights and how to ensure access to information. Additionally, once secured, there are opportunities to create new interactions with these data for innovation and creativity, as well as driving partnerships with other healthcare organizations to help patients apply these data to everyday health transactions and help protect privacy and inform. An increasing area.

EBO: How does interaction improve the ability to combine information from different sources to gain useful insights?

Mariano: By reducing effort, complexity, high cost, and lengthy process times, true interoperability—and the ubiquity of standards like Health Level 7 Rapid Healthcare Interaction Resources—allows faster paths to integration and understanding. Standards-based integration, clear coding/mapping expectations, common identifiers, and clear minimum expected data source boundaries, including those introduced by the US Core Data for Interoperability and others, allow for predictable processes and data sources, increasing the potential for automation. Treating people and focusing on data enrichment rather than quality management.

EBO: How will patients benefit from increased data sharing?

Mariano: Patients always benefit from information transparency. Improved mobility of care, ease-of-use and user-friendly pricing transparency, easier ways for patient education, and reduced barriers to care are benefits of increased information sharing for patients. All this leads to greater agency for patients and improvements in patient-centered care.

EBO: Can you discuss the potential of data collection in oncology to improve health equity?

MarianoWhen data collection focuses on providing representative populations that represent particularly underserved and historically marginalized populations, the likelihood of equitable treatment and healing increases. This in turn accelerates new treatments and care in these populations, and cuts short the delays caused by underrepresented drug and medical advances. Those historical delays have resulted in requirements for additional safety and other data collection before these at-risk populations have access to medical information and varying outcomes. This reduces the delivery of critical oncology assets to high-risk populations. Data collection is a critical tool to support equitable care.

EBO: Want to add something else?

Mariano: Where we stand today—at the intersection of cancer research, leveraging real-world data to drive breakthroughs, and patient-centered care—provides an opportunity for patient advocacy organizations to act as trusted stewards of information for all patients. In this role, patient advocacy organizations can support patients in taking control of their own care, mobilize multiple data sources to conduct oncology research, put the patient voice at the center of study design and delivery, and ensure these resources are accessible to all patients.

References
1. 21st Century Healing Law. HR 34, 114th Congress (2016). Accessed July 11, 2022. https://www.gpo.gov/fdsys/pkg/BILLS-114hr34enr/pdf/BILLS-114hr34enr.pdf
2. Interoperability and Patient Access Fact Sheet. News release. CMS; March 9, 2020. Accessed July 11, 2022. https://www.cms.gov/newsroom/fact-sheets/interoperability-and-patient-access-fact-sheet