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Your Patients, Their Data: Why Patient-Generated Health Data Is Critical for the Future of Healthcare

Dina Ranghanathan

Head of U.S. Healthcare, EPAM

Gaurav Rohatgi

Healthcare & Life Sciences Innovation Consulting, EPAM Continuum

Alvin Ow

Head of U.S. Central Healthcare & Life Sciences, EPAM
Blog
  • Healthcare

Patients—they generate data. Loads of it. With mandated social distancing policies in place during the COVID-19 pandemic, healthcare providers have been forced to get closely acquainted with virtual health. The benefits virtual care offers, in terms of accessibility, are obvious. However, additional benefits for both patients and providers can come from effectively leveraging patient-generated health data (PGHD) during these visits.

The volume and variety of PGHD has increased exponentially and will continue to grow as virtual health gets its closeup. Over the next decade, wearable technology is predicted to drive more targeted patient engagement thanks to a confluence of massive changes in the digital environment from 5G, AR/VR and software-as-a-medical-device to IoT and edge computing. Consumer interest in personal data collection has also spiked due to the broad availability of low-cost devices designed to monitor and inform healthy lifestyles.  Virtual heath – compounded by the proliferation of sensors, mobile apps, monitors, digital therapeutics, at-home diagnostics, patient surveys, social channels and other monitoring tools – has produced a tsunami of raw, unregulated and unstandardized data that could, theoretically, be used to make better care decisions. For providers to get the most complete picture of the patients they serve, the availability and use of PGHD is critical. PGHD can offer a broader view of the patient experience while generating real-time, continuous streams of health-related data before, during and after treatment, or as a more general study of disease. 

Addressing Challenges Related to Vast Volumes of PGHD

But how can healthcare companies cope with this overwhelming amount of PGHD? Key barriers not only include concerns about managing large volumes of PGHD but also questions about the accuracy of biometric data and symptoms collected from devices that collect PGHD, lack of interoperability standards, data provenance and governance issues, and gaps in privacy and security protections.

The ability to harness the power of PGHD will depend on the degree to which the healthcare industry successfully manages the raw data, extracts valuable information and transforms it into knowledge that can enable decision-making. The potential volume of data from devices requires stakeholders to determine and invest in the data storage and technical architecture needed to support PGHD use. In the absence of tools that can quickly analyze data and offer actionable insights, large amounts of PGHD may add inefficiencies and noise. By employing artificial intelligence and predictive analytics, healthcare companies can drive new insights and outcomes. For example, diverse data can be collected and combined and lead to a shift from traditional clinical trials to a synthetic one through the computation of big data sets. Done right, this can result in digital biomarkers; cutting-edge personalized therapies using real-world evidence, claims and genomics; and exponential changes in patient care management (disease onset, progression, and environmental influences)—all while improving quality of life for patients, better health outcomes and reduced costs.

The shift towards value-based care will provide a financial foundation for the PGHD business case, but rulemaking bodies will need to develop a technical and regulatory framework to encourage healthcare systems to embrace the utilization of patient-provided data. Federal agencies have already taken a leading role in designing new regulatory programs that encourage patient-centered, value-based care predicated on data-driven insights and will continue to do so as the PGHD landscape evolves. An example of which is the CMS Medicare reimbursement to providers that leverage PGHD. The US Food & Drug Administration’s Digital Health Precertification Program is another major step forward. It has already resulted in the clearance of digital therapeutics leveraging PGHD by companies, such as Pear Therapeutics and Omada Health.  A cooperative and transparent approach to these policy and cultural changes will be key for success.

The market is also making advances with interoperable data. Evolving technologies, like blockchain, can facilitate patient consent and interoperability while ensuring security. With industry groups, federal agencies and technology companies enabling data interoperability, PGHD can more easily be used for holistic and longitudinal analysis of health outcomes. Both the Fast Healthcare Interoperability Resources (FHIR) and Office of National Coordinator for Health Information Technology are setting new data standards to promote interoperability across the healthcare ecosystem. Interoperability advancement will be matched by methodological and analytical advancements to manage and interpret data. 

How Healthcare Companies Should Navigate PGHD

PGHD offers opportunities for the industry to innovate new products and services to engage patients and execute efficiently. Healthcare, biopharma and med-tech companies are in a unique position to fish greater actionable insights, infonomics and marketplace monetization from these data oceans. The stage is set for the entrance of new digital health companies that can deftly harness data assets.

Traditional healthcare players that do not innovate risk being left behind. A lack of transformational vision creates an opportunity for new entrants to disrupt the industry from the outside.

To protect themselves, incumbents should build capabilities to unlock the promises of PGHD. Healthcare providers must invest in solutions that increase physician adoption of PGHD in meaningful ways, by reducing the burden of caregiving and increasing the confidence of real-time decision support systems. Healthcare providers can use PGHD to gain a better understanding of the patient’s health over time and cut back on office visits and hospital readmissions, resulting in better outcomes and less burden for the patient.

Payors must create products that incentivize the use of PGHD to drive meaningful behavioral change among populations through value-based care programs. Biopharma and med-tech companies need to find new ways to demonstrate value, as evidence generation will likely become critical to support reimbursement for new curative therapies and services. All of these strategies require that patients and caregivers are motivated to sustain behaviors that result in quality PGHD. As patient-important outcomes (PIOs), like health span and mental health, are taken into consideration in the analysis of healthcare expenditures, businesses that go beyond clinical or patient-reported outcomes (PROs) to identify, integrate and productize PIOs are most likely to win.

It’s important to note that PGHD programs shouldn’t run in a single direction. In exchange for continuous data generation, healthcare organizations should be prepared to provide continuous treatment journey companionship and experience management to heroic patients—and weary caregivers—via coordinated omnichannel platforms. Across the healthcare ecosystem, an environment of collaboration with shared benefits must be created to drive secure data exchange, integration and analysis of PGHD between industry stakeholders. As the business case for PGHD use continues to be determined and the value to care advancement continues to be documented, healthcare systems and research institutions should collaborate with technology stakeholders to drive the advancement of the infrastructure that is paramount in making the use of PGHD work for all patients.

Conclusion

Adopting PGHD is an ambitious undertaking and companies can walk different paths to get there. The first step is to set an ambition and scope. PGHD programs must transcend organizational boundaries to enable cross- and multi-enterprise initiatives over the long term. For many healthcare giants today, this will be a difficult change to adopt as it requires a cultural and mindset change—starting with executive leadership. The ones that eventually succeed will be those with visionary leadership, a bold mindset and a willingness to prepare of the longer-term. The future vision is a healthcare ecosystem of partners sharing PGHD electronically to enhance care delivery and research efforts. With stakeholders working together, we can truly make this vision of increased capture, use and sharing of PGHD as part of a learning health system a reality.

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