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Ensuring Sustainability for a Patient Data Initiative
Patient Data Initiative Playbook Blog Series, Part Five
Harvey Jenner, Principal, Real World Networks, IQVIA
David Voccola, Senior Director, Technology & Registry Strategy, Patient Insights, Experience & Registry Solutions (PIERS), IQVIA
Melissa Rittase, Strategy Lead, Patient Insights, Experience & Registry Solutions (PIERS), IQVIA
Feb 17, 2025

In this fifth installment of our Patient Data Initiative Playbook, we’ll explore strategies organizations can use to fund and sustain patient data initiatives. These initiatives require substantial upfront investment and ongoing financial support, but by leveraging multiple funding sources, organizations can maximize their potential and ensure long-term success. Read part four of this blog series.

Finding value in your vision

Once an organization has outlined its patient data initiative’s goals and impact, excitement naturally builds. However, enthusiasm alone isn’t enough—sustained funding is essential to bring the vision to life.

Many patient organizations are uniquely positioned to launch data initiatives due to their trusted relationships with patients and caregivers. Yet, they often face financial roadblocks that make the costs of launching and maintaining such programs feel overwhelming.

While establishing a next-generation patient data initiative is expensive, the value it delivers is significant—not just for patients but also for researchers, clinicians and industry partners. These initiatives can drive scientific discoveries, improve patient care and evolve with advancements in research and technology. By demonstrating this long-term value, organizations can attract the funding needed to sustain their efforts.

Building a business case for sustainability

Success in patient data initiatives isn’t instantaneous—it often takes years of data collection to achieve key research objectives. A sustainability-focused business plan is crucial for ensuring longevity. This includes:

  • Understanding costs. Organizations should outline expenses for technology, staffing, patient outreach and ongoing operations to avoid financial surprises.
  • Identifying funding sources. A mix of diverse funding strategies will increase financial stability and reduce reliance on any single source.

With a strong business case, organizations can confidently seek financial support while demonstrating the lasting impact of their initiative.

Early seed funding strategies

Securing early funding is critical to getting a patient data initiative off the ground. Here are some key options:

  • Nonprofit collaborations. Partnering with other patient organizations or nonprofits can help pool resources and expertise. These partnerships often involve forming a joint governing body to oversee the initiative, contributing membership fees, or seeking joint fundraising opportunities. By working together, organizations can reduce financial burden while ensuring the data initiative aligns with shared patient-centered goals.
  • Life Sciences partnerships. Life Sciences companies are increasingly collaborating with patient organizations on joint research initiatives. While these partnerships can be mutually beneficial, they require careful governance to maintain trust and transparency. One effective model is the pre-competitive consortium, where multiple Life Sciences companies contribute seed funding in exchange for early involvement in shaping the initiative and/or restricted access to specific data based on agreed-upon terms. Once the initiative is fully operational, ongoing partnerships can be formalized through industry membership programs, ensuring sustainable support through annual commitments.
  • Philanthropic donations & major giving. Engaging individual donors, corporate sponsors and philanthropic foundations can provide direct funding. Many donors are eager to contribute to mission-driven projects that make a demonstrable difference in the lives of community members. Often, Board participation can be leveraged to drive funding or to attract new individuals who are passionate about adopting a data driven mission. This approach can not only provide funding but also strengthen your community’s involvement and long-term support.
  • Grants from foundations & government agencies. Grants from private foundations and government programs can offer a significant funding boost; however, securing these grants requires strategic planning to ensure the grant commitments align with your organization’s funding priorities. Grants can also require considerable reporting on fund usage, outcomes and measurable impacts, which some smaller organizations may find difficult to staff. Finally, grant funding can be highly competitive and time consuming, so be sure to clearly define goals and impact metrics to have a stronger chance of success.

Organizations can take one or many of these approaches to fund a data initiative.

Long-term funding for established initiatives

Once a patient data initiative is launched, additional revenue opportunities can support ongoing operations and growth. For instance, organizations can generate funding by partnering with Life Sciences companies for patient engagement, research and data-sharing initiatives, including developing insights on key health issues such as disease progression, treatment outcomes and healthcare access. Revenue from these services can offset operational costs of the initiative or help fund support programs that improve patient care and outcomes.

Not every organization is suited for industry-funded research services, particularly if there are data privacy concerns or limitations in data quality. However, with proper safeguards in place, these partnerships can create sustainable revenue streams to maintain and expand patient data programs.

The path to sustainability

Ensuring long-term sustainability requires diverse funding sources, strong partnerships and clear governance. While securing financial support can seem daunting, the collaborations and relationships built along the way will drive meaningful progress for patient communities.

To learn more about how IQVIA can help you with patient data, contact us at ppa-contact@iqvia.com.

In the next issue of our Patient Data Initiative Playbook, we’ll dive into the critical first steps of making your initiative operational – starting with selecting the right data types.

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