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Is The Time Right To Monetize Your Data Registry?
Mar 20, 2023
In the world of nonprofit health organizations, there are never enough resources to do all of the things you want to do. Operations, outreach, and research all cost money and fund-raising can be a constant challenge. But patient advocacy groups and medical specialty societies with mature patient registries can use these assets to help support their long term goals. The time has never been better for these organizations to consider getting more value from their data registries.
Several forces are converging right now to make this an opportune time to monetize registries.
- The healthcare system is shifting from volume- to value-based care. As healthcare shifts from volume- to value-based payment models, the demand for data to demonstrate the effectiveness and safety of care has never been greater. Value-based care involves paying providers based on outcomes rather than services provided. They receive incentives for improving outcomes, lowering costs, and delivering better patient experiences. But to do that they need data about the best treatment paths for patients, proactive indicators of looming health issues, and the factors that impact treatment adherence and patient experiences. Many of these insights can be gleaned from registries, where patients, caregivers and healthcare professionals share patient data, treatment decisions, and the outcomes of importance to them.
- Regulators, including the U.S. Food and Drug Administration (FDA), are seeking real world data in conjunction with clinical results to make approval decisions. The 21st Century Cures Act mandates the use of real world evidence (RWE) to support regulatory decision-making. The inclusion of RWE in submission documents can enhance FDA’s understanding of how a therapy works in the real world, and provide supportive evidence to determine whether a treatment deserves accelerated approval or a label expansion. There have been several cases in which FDA has indicated that real world data, including natural history studies that trace patient outcomes in the real world, have helped them decide to grant these approvals. In response, sponsors are eager to make RWE a part of their drug development journeys, and data gathered from patient registries can be an important part of this.
- The push for patient-centricity. Life Sciences companies recognize the value of creating more patient-centric research experiences as a way to improve recruiting and retention in trials. They are increasingly partnering with patient advocacy organizations and medical societies to leverage their registry networks and data to inform their research and trial designs as a way to make them more patient focused. As patient data becomes a more important part in this process, there is a need for registry owners to fill the role as a trusted broker and steward of data on their behalf. This will ensure the data remains in the control of the organization and its members, and that is used to ultimately benefit the patient and caregiver community.
- Informing rare disease research. Developers are increasingly focusing on rare disease research, where there are still many unmet medical needs to be addressed. These projects can be complicated by the fact that rare disease patient populations are small and dispersed, and there is a lack of data and experts studying these conditions. Data from patient registries can help fill that gap, providing developers with insights and access to patients, physicians and information about the disease journey. Being able to engage with a registry’s network of providers and patients can be incredibly valuable to Life Sciences companies that want to support real-world and clinical trial research programs in this space.
Getting Started
Patient advocacy organizations and medical specialty societies with mature registries are in a unique position to be able to support real world data goals. By licensing their registries to respected Life Sciences organizations, they may be able to help accelerate drug development and therapies, while generating revenues that support their long-term operational and outreach goals.
However, the monetization of registry data doesn’t just happen. Organizations need a strategy that takes into consideration potential areas of overlap between the organization’s registry vision and mission, and Life Science companies’ needs. IQVIA can help them in this planning, ensuring they have the right strategy in place to achieve a sustainable and secure registry monetization model.
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