-
Americas
-
Asia & Oceania
-
A-I
J-Z
EMEA Thought Leadership
Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more -
Middle East & Africa
EMEA Thought Leadership
Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more
Regions
-
Americas
-
Asia & Oceania
-
Europe
-
Middle East & Africa
-
Americas
-
Asia & Oceania
-
Europe
Europe
- Adriatic
- Belgium
- Bulgaria
- Czech Republic
- Deutschland
- España
- France
- Greece
- Hungary
- Ireland
- Israel
- Italia
EMEA Thought Leadership
Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more -
Middle East & Africa
EMEA Thought Leadership
Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more
WHO WE HELP
-
Pharmaceutical Manufacturers
-
Emerging Biopharma
-
MedTech
-
Financial Institutions
-
Government and Public Health
-
Health Plans
-
Hospital and Health Systems
-
Insurers and Risk
-
Medical Specialty and Patient Advocacy
Pharmaceutical Manufacturers
Harness unparalleled healthcare data, advanced analytics, and cutting-edge technologies with our expertise to accelerate the development and commercialization of innovative medicines, enhancing patient lives.
Discover MorePharmaceutical Manufacturers
Emerging Biopharma (Global page)
Boost your innovation with IQVIA's expert team. Our comprehensive solutions integrate top-tier insights, technology, and expertise to maximize your asset's success in a competitive landscape.
Discover InnovationsMedTech
Navigating MedTech's unique landscape: U.S. decision-making now rests with GPOs, IDNs, and payers, who demand solid value proof through rigorous outcomes analyses and pricing scrutiny.
Explore MedTechMedTech
Financial Institutions
Invest in healthcare with confidence. Stay ahead of pharma and medical device trends using real-time, high-quality data. Access market insights, historical sales, prescription trends, and emerging product information for informed, risk-reduced decisions.
Access InsightsGovernment and Public Health
Unlock deeper health insights with unmatched data and innovative technology to enhance decision-making for your essential government programs.
Unlock InnovationsGovernment and Public Health
Health Plans
Accelerate digital innovation with our data-driven expertise in data science and healthcare, optimizing business processes for smarter decisions.
Navigate Health PlansHospital and Health Systems
Leverage digital innovation to cut costs, boost efficiency, and elevate patient engagement, all while enhancing quality and health outcomes.
Streamline DecisionsHospital and Health Systems
Insurers and Risk
Enhance your ability to evaluate and forecast population risk swiftly and accurately by integrating unmatched data, expertise, and technology.
Uncover More
Medical Specialty and Patient Advocacy
Transform into a data-driven organization that enhances your specialty and showcases value to your members through digital transformation.
Explore NowU.S. PROGRESS POINT
A curation of IQVIA's best thinking on topics and trends driving change, disruption, and progress in the United States healthcare market.
LEARN MOREBLOGS, WHITE PAPERS & CASE STUDIES
Explore our library of insights, thought leadership, and the latest topics & trends in healthcare.
DISCOVER INSIGHTS
PODCASTS
"Discover the future through our enlightening podcasts available in the United States.
EXPLORE PODCASTS
Blog
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.
Related Resource