- Patient-generated health data (PGHD) is one of the most important sources of information for clinical decision-making, yet many healthcare organizations struggle to define the term, let alone to collect, analyze, and use the information for quality improvements and patient management.
While clinicians have always asked their patients to report on their latest symptoms or experiences between office visits, the rise of new technologies, new care strategies, and new financial pressures have radically altered the role of the patient – and the data he or she provides – in the process of delivering comprehensive, person-centered, value-based care.
The Internet of Things (IoT), including wearable devices, smartphone apps, and home monitoring equipment, is bringing potentially valuable data into the clinical environment, but developing the infrastructure and best practices to harness that value is a complex and daunting task.
To help providers understand and overcome these challenges, the Office of the National Coordinator partnered with Accenture Federal Services (AFS) to identify the top issues preventing the optimal use of PGHD for care delivery and population health management.
In a draft white paper, the organizations outlined several key action areas for the industry that will allow providers and patients to collaborate more effectively around patient-provided data assets.
“Patients have long kept paper logs of data about their health such as weight, symptoms, blood sugar readings, and medication effects. Patients have then brought these paper logs to doctor’s visits to assist them in discussing their health status, at-home treatments, and overall care,” the report acknowledges, but points out that interest in digital PGHD has risen alongside the proliferation of Internet of Things devices like wearables and smartphones with mHealth apps.
At the same time, payment reforms and new regulatory programs encouraging the adoption of value-based care techniques have incentivized providers to incorporate patient-generated data into the care process, while electronic health records and patient portals have made it easier to collect and standardize the data.
“All of these factors create an environment that is ripe for the capture, use, and sharing of PGHD,” the report states. “However, relatively few health care and research organizations are capitalizing on the opportunity to use PGHD to advance medical knowledge and support care delivery.”
“An examination of the current state and projection of the future state of PGHD reveals the opportunities, challenges, and calls to action for the main health care stakeholders, as well as supporting stakeholders. Progress in all of these areas is essential to achieving the envisioned future for PGHD.”
Addressing the technical challenges of PGHD collection and use
Consumer interest in personal data collection has spiked due to the broad availability of low-cost devices designed to monitor and inform healthy lifestyles. The proliferation of fitness trackers, app-based daily diaries, smart home devices, and other monitoring tools has produced a tsunami of raw, unregulated, and unstandardized data that could, theoretically, be used to make better decisions.
However, providers have largely been unable to find the signal amongst the chatter and clatter of the burgeoning IoT, the ONC says, due to a number of significant obstacles.
These barriers include concerns about managing large volumes of PGHD, questions about the accuracy of measurements from devices that collect PGHD, user authentication risks, lack of PGHD interoperability standards, data provenance issues, and gaps in privacy and security protections,” the report details.
“The potential volume of the data from devices collecting PGHD 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 to clinical and research workflows and noise to the clinical data.”
Source: ONC / Accenture Federal Services
Health IT developers and data standards organizations are attempting to address these issues through collaborative efforts to align different data collection and interoperability strategies, invest in shared standards like FHIR, and explore the role of emerging technologies like blockchain to develop a secure and coordinated PGHD ecosystem.
While many of these efforts are promising, the ONC points out that it often takes much longer to develop a consensus about standards or policy than it does to invest and release the next generation of consumer-grade devices to the public.
Developers and standards organizations can start to address this timeline disconnect by being more transparent about ongoing industry discussions about data standards.
For its part, the ONC hopes to encourage more collaboration through future policymaking that will push the pace of development and guide the formulation of strong privacy and security protocols.
Transitioning from episodic care to holistic patient management
While there are a number of technical issues surrounding the use of PGHD for analytics and point-of-care insights, one of the most significant barriers to patient involvement in decision-making is the industry’s fragmented efforts to move away from episodic, reactive patient care.
Pay-for-performance reimbursements and accountable care, which require providers to shoulder financial responsibility for long-term patient outcomes and overall health, are changing the way clinicians approach decision-making. Instead of relying on “isolated snapshots” of a patient’s health presented during a clinic visit, providers are seeking out continuous streams of information that will help them proactively predict a patient downturn that may end up as a costly crisis event.
Source: ONC / Accenture Federal Services
“Clinicians and researchers can [use PGHD to] gain a better understanding of the patient’s health over time and reduce office visits and hospital readmissions, resulting in better outcomes and less burden for the patient,” the ONC says. “Use of PGHD between encounters can help to ensure that patients remain in good health and avoid costly escalations in care, such as emergency room visits.”
Engaging in continuous monitoring – and sharing the results of that monitoring with patients and their caregivers – can change the dynamic of the patient-provider relationship, the white paper adds. By educating patients about the long-term impacts of their daily lifestyle choices, providers can empower patients to pay closer attention to their diet or fitness while instilling the idea that healthcare is not just a matter of seeking out help after acute symptoms have presented themselves.
“The ability for patients to monitor their data outside of clinical settings may increase treatment compliance by demonstrating the tangible effects of adhering to treatment protocols,” the ONC suggests.
“The sharing of PGHD also allows patients to share their habits and preferences so that care can be personalized to their needs and lifestyles. As a result, shared decision-making becomes an ongoing collaboration between patients and clinicians, and patient understanding of and adherence to treatment plans rises.”
In order to see these benefit from collecting and sharing PGHD, providers must secure long-term engagement from patients. Patients who do not receive an immediate return on their investment of time, effort, and money are likely to quickly abandon their apps and trackers.
Poorly designed tools, technical problems, and dismissive or unsupportive clinicians may all discourage patients from sticking with a new regimen, the report says.
Providers may need to shoulder the responsibility of reassuring patients that there is clinically valuable by holding patients accountable for their results, integrating the data into decision-making, and finding a place for PGHD within the workflow.
Adjusting policy to align with a value-driven PGHD environment
The ONC readily concedes that providers are currently ill-equipped to add huge volumes of unsolicited patient-generated health data into their daily routines, and does not necessarily expect that state of affairs to change without some policy-based interventions.
The shift towards value-based care will provide a financial foundation for the PGHD business case, but the ONC and other rulemaking bodies will need to develop a technical and regulatory framework to encourage the clinicians and health IT developers to embrace the utilization of patient-provided data.
“The framework should consider opportunities to help clinicians and care teams to identify priority use cases and relevant PGHD data types that would be valuable to improving care delivery for patient populations,” the report details.
“It should encourage them to develop standard practices for the use of PGHD, incorporate PGHD into their workflows, and use tools to analyze the data. To deal with potentially large volumes of PGHD, the framework should assist care delivery systems when considering investments in data acquisition, storage, and analysis technologies and exploring solutions to assess and manage data provenance and accuracy.”
Early PGHD pioneers are encouraged to share their successful solutions with their peers, collaborate with stakeholders who are interested in following in their footsteps, and contribute to policy discussions that will inform the future direction of PGHD utilization.
“Sharing this information will help other organizations to understand the value of and to invest in the use of PGHD,” says the ONC. “The framework should encourage clinicians and health care systems to proactively launch and support research studies examining the risks and benefits of using PGHD in care delivery among both healthy patients and those with acute or chronic health conditions.”
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.
A cooperative and transparent approach to these policy and cultural changes will be key for success, the report concludes.
“As the business case for PGHD use continues to be determined and the value to care advancement continues to be documented, health care systems and research institutions should collaborate with technology stakeholders to drive the advancement of the technology infrastructure that is paramount in making the use of PGHD work for all patients.”
“The future vision is a health care ecosystem of partners working to seamlessly capture, use, and share PGHD electronically to enhance care delivery and research efforts. Through 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.”