Creating and maintaining a high-quality registry for collecting and managing information about patient communities can support the mission in many ways. Study-ready patient registries help:

• Aggregate important but hard-to-find data for the disease community related to patient care, outcomes, experiences, and their support networks (e.g., patient insights and testimonials that can support patient-centric drug development).
• Share important information about symptoms, disease progression and treatment with the patient community
• Attracting researchers to study your disease area
• Create opportunities for collaboration with life sciences companies that can provide organizations with funding to create the treatments and products that patients need and to support other mission-critical activities.
• Provide patients with real-time support and insights to support their care journey

Patient registries can therefore fill an important niche in the healthcare ecosystem, supporting research, accelerating the development of new treatments, and gathering otherwise unknown patient voices and perspectives. We can provide important resources to amplify.

Building a research patient registry is expensive

Building agile, next-generation registries that can incorporate multiple data types is becoming increasingly attractive to patient advocacy organizations looking to enhance their ability to support research and therapeutic development. However, these registries are often prohibitively expensive, especially for low-budget patient advocacy groups. For medium to large rare disease advocacy organizations, registry technology costs are estimated at $500,000 to $2 million for initial setup and $300,000 to $1 million for ongoing annual maintenance. (These costs are highly dependent on the patient and treatment dynamics in the particular therapeutic area, the size of the proposed registry, the data collection mechanisms used, and the use cases utilized behind the registry.) Staffing Depending on the model, organizations may also incur additional costs associated with hiring and training staff to manage the use of the Registry and related programs.

Next-generation patient registries can be expensive to set up, but once built, they provide value to multiple stakeholders, address multiple organizational goals, and evolve and evolve as needs and circumstances change. can adapt. A complete picture of your treatment area will follow.

Closing the funding gap and promoting fiscal sustainability

Research-enabled registries provide value to all stakeholders, including patients, researchers, clinicians, and industry. However, due to their unique positioning, patient advocacy groups typically undertake upfront investments in these valuable resources because of their existing trust-based relationships with patients and caregivers.

Thankfully, patient advocacy groups have the opportunity to leverage registry expectations to offset the cost of building a registry and support ongoing maintenance.

This article describes how organizations can work with life sciences partners to support both pre-build and ongoing maintenance of registries.

Get Funding Opportunities from Life Sciences Before You Build Your Patient Registry

In recent years, life sciences companies and patient advocacy groups have begun to work more closely together on joint initiatives and research studies. This increased collaboration is beneficial to both parties. However, these relationships are often complex and, if not properly configured and monitored, can be perceived negatively.

While industry can be involved at many stages of a registry’s lifecycle, a growing trend is that patient organizations seeking to build registries will seek initial investment from a small number of life sciences supporters operating within their care. It is the formation of a pre-competitive consortium that pursues range.

Founding members provide seed funding in exchange for access to proprietary data and services as they become available, as well as the ability to shape registry development. Access to data can be restricted as necessary (e.g., anonymized data extraction or such as providing only analytical reports). , and the research community). Effective data governance is essential to successfully manage these partnerships.

For this approach to be successful, there must be sufficient demand for data in a particular disease or therapeutic area from life sciences organizations. Without this demand, new registry projects are unlikely to attract much interest or pre-competitive funding from life sciences organizations. In general, data demand is high when there is both a reasonable pipeline of upcoming therapeutic options for a therapeutic area and limited existing data assets.

Life Sciences Funding Opportunities for Ongoing Registry Maintenance and Program Support

Once the registry is in place, there is an opportunity to generate revenue using the data and/or patient network associated with the registry.

One way patient advocacy groups with established registries generate revenue is through a variety of patient engagement, data provision, and research services to help life sciences companies develop and bring new treatments to patients. is to provide In addition to generating funds to offset the costs of registries and other programs, such services support improved care and outcomes through increased awareness of clinical trials, provide insight into disease burden and disease. It can also accelerate the mission of patient advocacy organizations by supporting broader use of data to generate Access to health care, including progression and equity and access.

It’s important to note that not all organizations are equally suitable to start serving life sciences organizations. Some organizations are limited by the depth and quality of their data, their analytical capabilities, and/or the consent model they have in place. Others are limited primarily by the organization’s desire for this type of service. In particular, there are concerns about actual or perceived conflicts of interest that could harm the reputation of the organization, violate data governance policies, violate the mission and beliefs of the organization, or harm patients. Especially in some cases. relationship.

However, if deliberately approached and with appropriate safeguards in place, industry-focused services can provide a significant and lasting revenue stream that helps fund the maintenance or enhancement of existing registries and programs. .

Potential services typically depend on data and feature maturity

Organizations that decide to provide services to life sciences organizations and other partners vary considerably in the depth and scope of services provided. Additionally, these offerings and services may take several years before various offerings become effective as organizational capabilities increase and the value of registries and patient networks increases (see Figure 1).

Case Study: A Roadmap for Delivering and Funding Rare Disease Advocacy

^{Figure 1: Roadmap for development and expansion of rare disease registries.}

How to start

Harvey Jenner or Jessica Preston for more information on other organizations pursuing sustainable registry funding options and to discuss the best options for funding registry building or disease area enhancements Please contact us at (sustainability@iqvia.com).

To learn more about specific revenue-generating services that can drive sustainability for your organization, see our Sustainability Whitepaper.

About the author

Harvey Jenner Principal, IQVIA Healthcare Solutions

In his current role, Harvey leverages his scientific background and experience in healthcare consulting to help medical professional associations and patient advocacy organizations enhance their data-driven capabilities and deliver sustainable registry value. , developing research output and navigating the complexities of data governance for multiple registries.

Harvey has been with IQVIA for seven years, managing large global projects for pharmaceutical companies, healthcare providers and other healthcare organizations. Previous roles include data and evidence strategy and implementation roles at Real World Analytics Solutions. He holds a BA in Biology from Imperial College London. Harvey is based in San Francisco, California.

Jessica Preston MPH, Associate Consultant, IQVIA Healthcare Solutions

Jessica will join the IQVIA Healthcare Solutions team in 2021 to help patient advocacy and healthcare professional organizations develop registry and data strategies that support their core missions while also contributing to organizational sustainability Did. Previously, she worked as an analyst at Research supporting the health system and its partners on topics such as medical group medication management, specialty pharmacy, and health system service allocation.

Jessica holds a master’s degree in public health and a bachelor’s degree in biomedical engineering from the University of Virginia.She’s now based near Washington, D.C.