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The Patient Data Playbook: Unlocking Data-Driven Insights
How Patient Organizations Can Harness Electronic Health Information to Accelerate Their Mission
Jan 08, 2025
Are you ready to unlock the full potential of patient data?
Patient organizations are experiencing a renaissance, enabled by unprecedented access to the health and experience data generated in their communities. Yet, for many, harnessing this data to accelerate their organizations mission seems out of reach.
This playbook blog series aims help patient organizations of all sizes demystify the technologies, standards, regulations, and processes that are now prerequisites to making informed decisions about acquiring and repurposing data from their patient communities.
Just as importantly, this playbook is intended to help patient organizations de-risk aspects of patient data initiatives by highlighting often overlooked planning steps and increase their chances of success.
Key topics covered in this series:
- Why now is the best time to consider a patient data initiative
- Why the potential benefits are greater than ever before
- Understanding the evolution of options available for patient data initiatives
- Defining a vision and articulating to stakeholders
- Determining how to make your vision sustainable
- Figuring out where and how to get the data you need
- Selecting which technologies can empower your vision
Introduction
IQVIA has a long history of helping organizations navigate the complexities of patient data initiatives. By combining our experience in technology, program sustainability and observational research, we identified the need for a playbook in this area.
We noticed a consistent pattern across our roles as mentors, consultants, and subject matter experts of patient organizations, observing that they often address crucial decisions about data initiatives out of sequence, or not at all, leading to costly corrections later.
The importance of getting your patient data initiative right
The decision to build or enhance a patient organization’s data capabilities can originate in countless ways, but the desire to “get it right” is paramount. This is best achieved through a careful balance of intentionality and flexibility, regardless of technology.
Historically, these attributes have not been used together when describing registries and other legacy patient data initiatives. Where those initiatives sought to focus a precise stream of patient data on a specific set of research questions, today’s initiatives are sophisticated undertakings that repurpose ever larger sets of health-related data to expand and refine existing knowledge, while continuously supporting the pursuit of new research questions.
The playbook describes the advancements in:
- Technologies: New tools and platforms that enable more efficient data collection and analysis.
- Data Standards: Improved standards that ensure data consistency and interoperability.
- Regulations: Updated regulations (in the United States) that facilitate better access to and use of patient data.
These advancements make this new paradigm possible but can create a false impression that patient organizations can skip steps in the planning process. It’s crucial to avoid this misconception to ensure the success of data initiatives.
Navigating the patient data landscape
Similarly, there are nearly endless combinations of data types that can be useful to organizations, depending on treatment area, incidence rate, community demographics, therapeutic availability, intended stakeholders, planned analyses, and other factors.
For example, a patient organization focused on rare diseases might prioritize genetic data and patient registries, while an organization dealing with chronic conditions might find electronic health records (EHRs) and patient-reported outcomes more valuable.
Regardless of the combination eventually chosen, patient organizations frequently experience a form of analysis paralysis when faced with the large and diverse landscape of available data types that have developed over the past decade.
In this series, we share best practices for determining relevant combinations for initiatives, as well as nuances associated with several popular data types. All other guidance on data types is consolidated under the term, “electronic health information (EHI),” which succinctly refers to every form of electronic data directly or indirectly related to human health. (Conveniently, this is also the term used in the regulations related to accessing patient data in the United States.)
Overcoming barriers
This is a pivotal moment for patient organizations and their communities. However, the renaissance will only arrive when organizations begin adopting these new data capabilities as a whole.
We appreciate that organizations attempting to do so can encounter both strategic and operational barriers along the way, including:
- Infrastructure: Ensuring the right technological infrastructure is in place to support data initiatives.
- Staffing: Finding and retaining skilled personnel to manage and analyze data.
- Governance: Establishing clear governance structures to oversee data initiatives.
- Stakeholders: Engaging and aligning stakeholders with the organization’s data vision.
- Potential Partners: Identifying and collaborating with the right partners.
- Funding: Securing adequate funding to support data initiatives.
While the playbook is not intended to be a panacea for these complex questions, it is intended to help patient organizations ensure they are addressing the right questions, in the right sequence, with the right information.
Up Next: Why now is the best time to consider a patient data initiative
The next blog in this series will discuss the external factors contributing to this once-in-a-generation opportunity to enhance patient data initiatives and why now is the best time to begin.
To learn more about how IQVIA can help you with patient data, contact us at ppa-contact@iqvia.com.