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Blog
Building a Vision & Engaging Stakeholders for a Patient Data Initiative
Patient Data Initiative Playbook Blog Series, Part Four
Feb 11, 2025
With so much progress in healthcare technology and data sharing, there’s never been a better time to start a patient data initiative. But once an organization recognizes the opportunity, what happens next? Jumping in without a clear plan can lead to challenges down the road. That’s why it’s essential to take a step back and focus on the vision before collecting any data. In this blog, we’ll walk through the key steps to setting a strong foundation, engaging the right stakeholders, and ensuring long-term success. Read part three of this blog series.
Start with a clear vision
Before making any major investment, organizations need to define why they’re launching a patient data initiative and what they hope to achieve. Here’s how to get started:
- Understand what patients need. To build something truly valuable, it’s important to listen to the patient community. A well-rounded assessment that looks beyond internal advisors and industry sponsors can help identify real gaps in research and care. Ask: What problem are we solving, and why does it matter?
- Stay focused on what’s possible. It’s tempting to try to solve every problem, but that can slow things down and lead to frustration. Patient data initiatives work best when they have a clear, targeted goal. While it may feel difficult to narrow the focus, a well-scoped project has a much better chance of making a real impact.
- Define success from the start. How will you know if your initiative is working? Setting measurable goals and benchmarks from the beginning helps keep everything on track. Clear metrics also prevent “scope creep”—when projects get bigger and more complicated than originally planned.
- Stay flexible. Healthcare is always changing, and so are the technologies that support it. Since patient data initiatives require time and resources, it’s essential to stay adaptable. Breaking big projects into smaller, manageable steps makes it easier to pivot and improve along the way.
Shape the scientific vision
For a patient data initiative to be effective, it needs a strong scientific foundation. That means defining the research questions and identifying the data needed to answer them. This process should include input from key players—clinicians, researchers, regulators, and, most importantly, patients. Some key questions to ask include:
- What are the main research goals?
- What questions are important to outside stakeholders?
- What groups or locations should be included?
- What kind of data is required?
- What existing data sources are available, and where are the gaps?
Getting these details right helps ensure the initiative is feasible, useful, and impactful.
Engaging patients & caregivers
Patients aren’t just participants in a data initiative—they’re the foundation of its success. New technology makes it easier than ever for patients to share their data directly, but to get them involved, organizations need to build trust and engagement.
Strong patient involvement helps to:
- Confirm the need for the initiative.
- Ensure diverse representation.
- Choose the right tools for data collection.
- Improve the patient experience and make participation easier.
- Encourage long-term involvement.
A patient-centric approach from the start ensures the initiative stays aligned with real patient needs and creates meaningful, actionable insights.
Set up governance & oversight
Clear governance policies are essential for building trust and accountability. A steering committee should include a mix of perspectives, such as:
- Organizational leaders
- Clinicians and researchers
- Patients and caregivers
- Technology experts
- Ethics specialists
- Industry partners (if relevant)
This group helps establish and oversee policies on:
- Consent: How data will be collected and used, ensuring transparency.
- Data Use: Who can access the data, how it’s shared, and how findings are published.
- Ongoing Engagement: Keeping patients and industry partners involved in key decisions.
Strong governance not only ensures compliance with legal and ethical standards but also builds credibility and reassures stakeholders that data is being handled responsibly.
Looking ahead: funding & long-term sustainability
Once the vision is clear and key players are engaged, it’s time to think about practical next steps—like designing study protocols, defining data requirements, and choosing technology platforms. But before diving into implementation, organizations need to plan for sustainability.
To learn more about how IQVIA can help you with patient data, contact us at ppa-contact@iqvia.com.
In the next blog in this series, we’ll explore how to fund a patient data initiative and ensure its long-term success.
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