How patient willingness to share data can support care research
Organizations are finding patients with serious illnesses understand the value of providing real-world data to enable a learning healthcare system.
For healthcare organizations to support today’s rapid transformation, developing a continuously learning healthcare system is needed to help glean lessons from the past and carefully plan for the future.
In 2007, the National Academy of Medicine (formerly the Institute of Medicine) defined the learning health system as an environment in which “science, informatics, incentives and culture are aligned for continuous improvement and innovation, with best practices seamlessly embedded in the delivery process, [with] patients and families active participants in all elements, and new knowledge captured as an integral by-product of the delivery experience.”
Over the past 15 years, steady progress has been made toward achieving these goals. The healthcare industry has never been so driven by data, so centered on patients or so close to truly aligning incentives for the shared benefit of all stakeholders.
But there’s still plenty more work to do to make the learning health system a reality. Patients must be better engaged so they can become active participants in this endeavor.
Patients' contributions are crucial
Patients hold the keys to real-world data (RWD), or data generated from routine clinical care, whether it be from electronic health records (EHRs), digital devices or disease registries. These deep, broad, multifaceted data assets are essential for designing and implementing innovative care protocols for patients from all backgrounds and socioeconomic circumstances. Real-world patient data will help address some of healthcare’s biggest challenges, including eliminating health inequities, finding more effective treatments for hard-to-treat diseases and improving patient experiences while appropriately controlling spending.
"To ensure that we are optimizing the nation’s healthcare system, we need to work collaboratively to generate value from these patient data assets, and educate clinicians on how best to coach and engage patients on the benefits and challenges of sharing their health data."
Fortunately, patients are increasingly willing to share their data and to actively participate in finding better methods for treating cancers and other serious diseases. For example, a recent study from the University of Pennsylvania revealed that patients are more likely to share their EHR data with researchers. compared with their willingness to share other types of sensitive information, such as financial records, location data and internet activity data.
Surveys conducted both before and during the COVID-19 pandemic further support this shift in thinking, with one poll from the Pew Charitable Trusts finding that 81 percent of survey respondents believing that health data should be shared more freely across the healthcare ecosystem.
Oncology patients and their caregivers agree. Approximately 85 percent of people surveyed in August 2021 shared that they are willing to share anonymized data if asked by their doctor, and the same number believe oncologists should be taking a more active role in starting these conversations.
However, in this same survey, fewer than half of oncology patients said their clinicians raised the possibility of sharing their data with researchers, despite the fact that the vast majority of oncologists strongly believe in the power of real-world data to accelerate cancer research. This gap between perception and reality highlights the importance of translating ideas into action.
Fixing potential barriers
To meet this increasing patient acceptance of and willingness to healthcare data sharing, oncology providers and health systems alike need to address pre-existing policy and procedural barriers that may prohibit or inadvertently disincentivize data sharing. For example, historical misunderstanding of HIPAA rules and regulations has made patient data sharing between healthcare providers cumbersome and difficult.
"EHR vendors need to embrace both UI and UX innovations to ensure that EHRs meet clinical needs, not just billing requirements."
For clinicians, education on the value and related precautions surrounding personal health data need to be front and center as part of the conversation with patients facing cancer. Clinicians should offer specific insights on how patient data will be used – to support clinical trials, accelerate availability of life-saving treatments, and more.
This focused communication can help patients understand the inherent value of their de-identified health data, while also helping to lessen their concerns relating to risks. These type of frank, value-driven conversation between clinician and patient is also helpful in building a long-term trusting relationship that can and should carry on throughout the arduous journey of cancer patients.
Additionally, providers and industry alike need to explore new methodologies, technologies and partnerships to enable faster and easier data generation and transfer while ensuring that patient privacy remains protected. This starts at the point-of-entry so that a patient’s clinical record is as accurate and complete as possible. EHR vendors need to embrace both UI and UX innovations to ensure that EHRs meet clinical needs, not just billing requirements.
Lastly, partnerships that facilitate the safe transfer of patient clinical data to relevant industry partners, researchers and institutions are critical.
Evidence-based care’s potential
The next generation of patients is depending on healthcare organizations to create a world in which evidence-based medicine is accurately and equitably applied. They are also depending on the learning healthcare system of the future to use their personal health information with respect, purpose and sensitivity.
To ensure that we are optimizing the nation’s healthcare system, we need to work collaboratively to generate value from these patient data assets, and educate clinicians on how best to coach and engage patients on the benefits and challenges of sharing their health data.
If we can build on our current industry innovation and momentum, while continuing to build trust with patients about the power of their data, we will be able to adapt to the changing demands of a healthcare industry in flux and achieve the patient-centered promises of the learning health system.
C.K. Wang, MD, is chief medical officer at COTA Inc.