PUTTING DATA TO WORK FOR PRECISION ONCOLOGY. A CALL FOR DATA SHARING
In the era of precision medicine, data isn't just information—it's a lifeline. When shared, it enables doctors to tailor treatments, researchers to make groundbreaking discoveries, and ultimately, patients to receive care that’s not only more effective but also designed with their unique needs in mind. This November, #KNOWvember, we’re focusing on - how can we put data to work for precision oncology?
The Promise of Data in Precision Oncology
Cancer treatment has come a long way in recent years. By tapping into genetic, clinical, and even lifestyle data, precision oncology allows for highly personalized treatments that target the molecular makeup of each cancer. This approach can make treatments more effective, reduce unnecessary side effects, improve outcomes and provide a better quality of life.
To make these tailored treatments available to more people however, we need to unlock the potential of data that’s already out there, waiting to be used in a way that drives results. However, harnessing this valuable resource is often harder than it should be.
What’s Stopping Us? Key Barriers to Data Access
Despite its immense potential, the data we need for precision oncology is often isolated and inaccessible, trapped within individual institutions, fragmented across systems, or hindered by regulatory barriers. Let’s explore some of the main roadblocks:
Healthcare Infrastructure Limitations. Many hospitals and clinics lack the technological infrastructure to share data securely and efficiently. Different systems don’t always “speak” to each other, making it difficult to combine data across locations.
Regulatory Constraints. Privacy laws are essential for protecting patient rights, but varying regulations across regions can make it challenging to share data. While respecting patient privacy is vital, there’s an opportunity to strike a balance that also enables life saving research.
Lack of Funding for Data Sharing. Infrastructure improvements and secure data sharing systems require financial investment, yet this need is often underfunded. Without dedicated financing, many organizations, including hospitals struggle to build the resources needed to participate in a more connected data sharing network.
Why We Need to Put Data to Work for Precision Oncology
Data sharing in precision oncology is essential for several reasons:
Improving Outcomes through Personalized Care: By sharing patient data, oncologists can tailor treatments to an individual’s unique cancer profile. This kind of personalized care can lead to better treatment outcomes and a higher quality of life for patients.
Accelerating Research and Discovery: Data from real world cases fuels research. When researchers have access to diverse datasets, they can identify trends and patterns that may otherwise go unnoticed. This insight can lead to new therapies, better diagnostic tools, and innovative cancer treatments that benefit all patients.
Reducing Health Disparities: Data sharing helps ensure that underrepresented populations are included in research, leading to more equitable treatment options. By widening the scope of accessible data, precision oncology can address disparities and ensure that advances benefit all communities, not just those with access to specialized care.
Moving Forward: Making Data Sharing a Reality
The good news is that solutions are within reach. To break down barriers to data sharing, we need to focus on a few key areas:
Building Collaborative Infrastructure: By investing in interoperable systems, we can create networks that allow healthcare organizations to share data seamlessly. Emerging standards, like FHIR (Fast Healthcare Interoperability Resources), help make this possible by enabling different systems to “talk” to each other securely.
Implementing Clear, Supportive Regulations: Policymakers can make a difference by enacting guidelines that encourage responsible data sharing while respecting patient privacy. Some regions have started exploring frameworks that protect patient information but allow for sharing in research and clinical contexts.
Securing Funding for Data Initiatives: Public and private sectors must step up to fund data-sharing initiatives. Supporting infrastructure and training enables more healthcare providers and researchers to participate in data sharing, making precision oncology accessible to more patients.
#KNOWvember: Join the Movement to Drive Precision Oncology Forward
Data is the driving force behind precision oncology, but to make it work, we need a commitment to collaboration, investment, and thoughtful regulation. This #KNOWvember, let’s amplify the conversation about data sharing, connect patients and providers to real world stories, and work together to create a future where cancer care is precise, personal, and accessible.
Want to learn more?
Visit knowyourgenome.co and join us on social media with #KNOWvember #KNOWYOURGENOME and #PMAM. Together, we can turn data into action and make precision oncology work for everyone.