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Convening a Digitally Enabled Ecosystem to Address the Chronic Disease Burden of an Underserved Community

Article · September 28, 2018

Problems, Opportunities, and Challenges

The economic burden of chronic disease goes beyond the cost of treating health conditions; it includes the indirect costs of lost productivity. In 2016, this total burden approached $3.7 trillion, accounting for 19.6% of the United States Gross Domestic Product. The rise in chronic disease has been fueled in large part by the obesity epidemic; analysis has estimated that the disease burden caused by obesity accounted for 47.1% of the total cost of chronic diseases in 2016.

In this article, we describe an ecosystem-based solution that relies on (1) a digital health platform to establish connectivity across disparate participants for data sharing and technology access and (2) a convener to orchestrate technology-enabled chronic disease management programs that can be customized to the needs of an underserved population.

Disruption Is Here

Today’s health care system is ill-equipped to deal with the rising chronic disease burden because it operates as a centralized sick-care model that is ineffective for the prevention and management of chronic disease. Mobile and cloud technologies, combined with big data and advanced analytics, hold the promise to disrupt this sick-care model. These technologies can extend and virtualize disease management outside of traditional health care facilities to where patients live and work, while simultaneously facilitating integration and coordination along the care continuum from prevention to treatment, so that chronic disease management can be continuous, proactive, and more effective.

But Integration Is Lacking

The digital health industry is seizing this opportunity. From apps and wearables to remote monitoring and virtual care, a dizzying array of health products are flooding the marketplace. However, too often, these digital health products come at us as a barrage of ever-evolving wearables or applications — with each product housed in its own silo, based on elusive scientific evidence, and targeting specific capability gaps in the care continuum — but with no connectivity to the rest of the care delivery system.

Health care organizations typically lack the skills and experience to efficiently evaluate the myriad similar-sounding options. The complexity of contracting with vendors, integrating each new product with other digital tools into a complicated care delivery workflow, and maintaining and updating each new product is logistically daunting and costly in terms of time, effort, and capital.

And Access Is Not Equitable

Moreover, digital health technologies are still very expensive, requiring significant upfront financial, technological, and regulatory investment to integrate and deploy. This upfront cost creates a significant barrier to entry for many, especially the vulnerable populations in underserved communities. It has been reported that the prevalence of obesity is nearly 13% higher in low-income households compared with high-income ones, reaching >50% of adults in the underserved communities of South Texas.

Not surprisingly, vulnerable populations with socioeconomic disadvantages are disproportionately burdened with chronic disease. While such populations would stand to benefit the most from technological innovations, they unfortunately are the ones most likely to be left behind in this revolution because of a lack of access to providers who utilize these products, the inability to pay out-of-pocket for the products, or a lack of health benefits that will cover their cost.

An Ecosystem Solution to Lower the Barriers to Technology-Enabled Care

Any solution designed to alleviate the stress on our health care system must deal head-on with the reality and challenges of caring for the most vulnerable among us. One such key challenge is the barrier to accessing technology-enabled care. Other industries have shown that a “platform-as-a-service” model can remove upfront barriers to entry for small organizations or ordinary people, making previously inaccessible capabilities available and affordable. One example is Amazon Web Services, which offers an affordable way to access storage and computational capabilities without building one’s own data center.

An “Amazon-Like” Platform for Health Care

We envisioned a platform purpose-built for hosting market-available digital health products from a variety of companies. Such a platform would (1) expand the options accessible to both providers and patients by serving as a convenient single source for many digital health products, in much the way that Amazon’s single e-commerce site provides access to not one, but thousands, of vendors, and (2) facilitate the interoperability across these products and their integration with traditional care delivery services.

Once connected to such a platform, a provider would gain visibility to multiple vetted products, thereby minimizing the time, effort, and expertise required to adopt digital health tools. By extension, this one-to-many connection via a common platform would reduce the future cost of switching to new or updated technologies. In addition, through such a common platform, participants would become digitally connected, thereby removing technical barriers to the sharing of data and technologies.

Importantly, the benefit of a platform-as-a-service model would be more significant for resource-constrained providers (such as a primary care practice in a rural community), who are even less likely to be able to afford the upfront capital and human resource investment required to engage, select, and implement digital tools on their own.

Orchestration of Care Delivery Programs

Care delivery is not equivalent to a retail transaction. There is no single device, app, or piece of data in isolation that will deliver benefits to patients. Therefore, the various digital health products that can be made accessible through a common platform would still need to be stitched together and integrated into a coherent care delivery program.

Programs that extend care into real-world settings have the additional challenges of coordination across an extended care team that spans different organizations, industries, and communities. Moreover, not all digital health products necessarily improve quality of patient care equivalently, and tools that reduce the cost of care do not guarantee better patient outcomes.

Therefore, effective chronic disease management requires program orchestration, from customized design that selects the best-fit technologies to methodical execution that manages the transitions of care. Such orchestration is enabled by the digital health platform but relies on the deliberate efforts of a convener to (1) mobilize and organize disparate stakeholders from different industries, (2) design care programs that match the needs of the target population, and (3) govern the ecosystem to advocate for patient benefits, protect patient privacy, and build public trust.

Roles of a Convener

  • Convene and mobilize health care providers, technology enablers, and retail and community partners to participate in the ecosystem

  • Advocate for patients by orchestrating care delivery programs that are customized to needs of the patients and the population

  • Govern ecosystem participants and manage public-private collaborations to ensure cooperative behaviors, compliant and secure operation, and protection of privacy of patient data

 

Source: The Authors

A Demonstration: Project DOC

According to the Centers for Disease Control and Prevention’s Diabetes Report Card, diabetes alone affects 29.1 million Americans today and will affect 1 in 3 Americans by 2050; this level of disease burden has already been reached in the underserved community of South Texas. In addition to a high prevalence of diabetes and obesity, the lower Rio Grande Valley region in South Texas is challenged by poverty and a severe shortage of physicians (e.g., this region has 40% fewer direct care physicians per 100,000 compared with the entire state of Texas).

The University of Texas (UT) System and its Board of Regents are committed to its tripartite mission of “Education, Research, and Care” for all citizens of the state. To that end, in 2015, the UT System Board of Regents approved a proposal by the Office of Health Affairs to launch Project Diabetes Obesity Control (DOC) for the purpose of developing an ecosystem built on cross-sector collaborations to bring digital health technologies to the underserved.

University of Texas System as the Convener

The UT System convened relevant public and private organizations under a contractual framework to pilot a digitally connected ecosystem. First, to enable data fluidity, the UT System engaged PricewaterhouseCoopers (PWC) to customize its cloud-based information interchange as the designated digital health platform and to develop subordinate data use and sharing agreements for aggregating and sharing patient health data across authorized participants in the ecosystem. To bring market-available digital health capabilities to the ecosystem, the UT System engaged AT&T to provide IoT (Internet of Things) capabilities on an end-to-end secure communication network.

To help embed these technology capabilities into the community, the UT System engaged the UT Health School of Public Health in Brownsville to serve as the local shared-service office to interface with community partners. Finally, the UT System mobilized care delivery organizations, retail partners, and community groups to participate in the Project DOC ecosystem under network participation agreements or memoranda of understanding that define the rules governing access to data and technology.

Key Rules Governing Participation in the Ecosystem

  • Each participant agrees to participate under the convening oversight of the University of Texas System

  • Each participant is responsible for qualification, accreditation, and licensure of its personnel

  • Each participant agrees to and is responsible for entering into data use and sharing agreement with the designated digital health platform

  • Each participant agrees to share patient information with the ecosystem via the designated digital health platform for the sole purpose of delivering patient care

  • Patient data will remain the ownership of the contributing participant

  • Each participant agrees to cooperate in the event of any issues or incidents arising in the ecosystem

 

Source: The Authors

Orchestrating Chronic Disease Management Programs Across a Digital Health Platform

Connectivity across the ecosystem was established through PwC’s DoubleJump Interchange, which was designated as the Project DOC digital health platform. The Interchange was to serve as a digital highway that would facilitate data sharing among, and bring market-available digital health tools to, ecosystem participants.

Early participants included Su Clinica Familiar, a federally qualified health center; US Wellness, a wellness company that conducts health screening and provides 1:1 nutritional counseling service supported in part by Walmart and UnitedHealthcare Community Plan; Pursuant Health, operating self-monitoring kiosks in Walmart stores; an AT&T-managed IoT service for remote monitoring; and Surescripts, a pharmacy fulfillment data source. The result was an industry-first prototype of a cloud-based health care data ecosystem connecting independent public and private enterprises for the purpose of care delivery.

A Connected Health Data and Service Ecoystem - digital health platform convener

Diverse stakeholders across industry sectors are convened by the UT System as participants in a virtual ecosystem in which data are shared on a common digital health platform. Click To Enlarge.

With the prototype ecosystem established, we developed REDI (Real-world Education Detection and Intervention), a chronic disease management framework that (1) relies on data fluidity across participants for continuity of care and (2) leverages digital health technologies hosted on the common platform for easier adoption of technology-enabled care. As a demonstration, Project DOC developed two REDI programs as described below.

Free health screening and education initially were offered to shoppers visiting Walmart Stores and have now been expanded to other community sites, such as churches and farmers’ markets. For patients with poorly controlled diabetes who were under the care of a federally qualified health center, remote monitoring was provided to improve disease control between clinic visits. Clinical and real-world health data were collected and integrated into a patient-centric profile that can be longitudinally tracked on the digital health platform. Click To Enlarge.

REDI Remote Monitoring Program: Improving Disease Control Between Doctor Visits

Remote patient monitoring is a proven intervention that has been shown to be effective for improving the control of diabetes or hypertension among patients with poorly controlled disease or multiple comorbidities. However, implementing remote patient monitoring in a primary care setting remains a challenge for patients and providers in a resource-constrained community.

The REDI Remote Monitoring Program lowered the barrier to remote patient monitoring by (1) providing Su Clinica clinicians with access to a remote patient monitoring service (operated by AT&T) with upfront and ongoing technical support, (2) facilitating coordination across care teams with workflows for enrolling, training, and monitoring patients, and (3) providing the care teams with an integrated and longitudinal view of patients’ clinical (electronic medical record) and real-world (remote patient monitoring) data in 360HealthProfile, an application developed in collaboration with IBM.

Among the 226 patients for whom remote patient monitoring was prescribed, 111 patients with pre-monitoring and post-monitoring HbA1C measurements (as of February 2018) showed an average reduction of 1.17 points (from 10.08 to 8.91). In addition, interim analysis of hospitalization records for a single clinic over a 6-month period showed that the 30-day readmission rate was 7.2% for patients who received remote monitoring, compared with 18.2% for those who did not (unpublished data, Su Clinica).

Improved Disease Control in Patients Receiving Remote Monitoring - digital health platform convener

The Outcome Dashboard on PwC’s Interchange tracks patient health data longitudinally. This screen snapshot shows overall reduction in HbA1c measurements for diabetes patients before and at least 90 days after enrollment in the remote patient monitoring program. Click To Enlarge.

REDI Prevention Program: Bringing Prevention to the Invisible Population

Health literacy education and prevention are important for obesity control and chronic disease management. A significant portion of the population in this community is invisible to the health care system, either because they are not enrolled in the health care system as the result of a lack of health insurance coverage, because they do not receive routine preventive primary care, or because they fail to utilize available services as a result of low health literacy.

We designed the REDI Prevention Program with the dual objectives of (1) bringing health screening and education to people where they are every day, starting in conveniently located retail locations (e.g., Walmart stores), and (2) connecting these individuals (with their authorized permission) to additional services, such as community resources (e.g., cooking classes provided by Brownsville Wellness Coalition), self-monitoring at Pursuant Health kiosks in Walmart stores, medication counseling by pharmacists in Walmart pharmacies, or nutrition counseling provided by a registered dietician funded by UnitedHealthcare.

We first piloted the REDI Prevention Program in collaboration with Walmart by tapping its retail footprint to offer free screenings to >8,000 shoppers in a 6-month period. The diabetes and hypertension risks in the tested population were 20% and 30%, respectively. Over half (53%) of the individuals in the tested population were without a physician, and 57% were without health insurance.

Among 1,334 individuals who were surveyed after screening, 69% indicated that they only went to Walmart to shop and would not have gone for a health checkup. Once enrolled, 94% indicated that they found the screening service to be educational and 98% indicated that they would recommend it to family and friends. While only 22% knew their own disease risks, 76% indicated that they would want to change their behaviors on the basis of the screening results; however, they needed help to do so.

These findings reinforce the premise of REDI, that longitudinal tracking of patient health data in a connected ecosystem will facilitate personalized engagement and timely intervention to help patients improve their health.

Calling for Conveners

Project DOC’s results to date have demonstrated the feasibility of a patient-centric, digitally enabled ecosystem built on public-private, cross-industry collaborations. The specific strategies or methodologies we have employed to establish an ecosystem and orchestrate technology-enabled care delivery programs are beyond the scope of this perspective. Instead, we are specifically making a case for and highlighting the critical roles of a convener.

We have described an ecosystem solution whereby disparate participants are connected by a common digital health platform designed to integrate and organize the many modalities of care delivery (in person, virtual, remote, and, soon, artificial intelligence/robot care delivery) across the entire care continuum (from prevention to treatment, from home to work, and from hospital to clinic) so that customized chronic disease management programs can be orchestrated to match the needs of a target population.

With new technology waves cycling every 12–18 months and with large and small digital health technology companies appearing and disappearing, this ecosystem model can bring order to chaos for health care providers and patients, as well as increase the likelihood that health technology innovations will benefit patients who have the greatest needs. Based on our firsthand experience, we have articulated why such an ecosystem requires a convener and a governance structure to manage the complex interactions between participants, ensure patient benefits, and maintain trust and order.

In Project DOC, the University of Texas System, later joined by the Valley Baptist Legacy Foundation, leveraged its influence and unique health care perspective to act as the convener to mobilize, facilitate, and manage collaborations across public and private sectors for the purpose of addressing the unique challenges of a vulnerable population. We have shared our experience and progress to date in order to motivate other public institutions, foundations, and nonprofit organizations to step forward and take on the role of convener — not to advance a specific digital product or service, but to bring the whole continuum of care to patients by tapping into diverse public and private efforts.

Our patients deserve it, and our health care system needs it.

 

Project DOC was conceived and launched by Dr. Lynda Chin as Chief Innovation Officer and Associate Vice Chancellor for Health Affairs at UT System. The work is supported by the UT System Board of Regents and the Valley Baptist Legacy Foundation.

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