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The American Journal of Managed Care September 2016
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Knowledge Gaps Inhibit Health IT Development for Coordinating Complex Patients' Care
Robert S. Rudin, PhD; Eric C. Schneider, MD, MSc; Zachary Predmore, BA; and Courtney A. Gidengil, MD, MPH
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Knowledge Gaps Inhibit Health IT Development for Coordinating Complex Patients' Care

Robert S. Rudin, PhD; Eric C. Schneider, MD, MSc; Zachary Predmore, BA; and Courtney A. Gidengil, MD, MPH
This study examines the leading edge of health information technology used to coordinate the care of complex patients.
ABSTRACT

Objectives:
Complex patients incur a majority of healthcare costs in the United States, in part, because their care is poorly coordinated. We sought to determine the leading edge of health information technology (IT) tools for care coordination of complex patients.

Study Design: Qualitative discussions and technical expert panels.

Methods: We conducted 35 discussions with clinical leaders, technology and startup executives, government officials, academic researchers, and 2 technical expert panels.

Results: Although health IT has the potential to improve care coordination, the types of IT tools available to clinicians and patients are currently limited. We found substantial barriers to developing technical capabilities for improving care coordination, including lack of knowledge of users’ needs; lack of standardized roles, responsibilities, and protocols; required changes in providers’ work activities to achieve coordination; and an unclear value proposition.

Conclusions: We found several innovative tools, but existing efforts suffer from important limitations, including minimal engagement by physicians, lack of standardized definitions of what the tools do, and challenges integrating with clinical workflows. For health IT to facilitate coordination of care for complex patients, user needs and workflows must be better understood and used to guide the development of technology and policy.

 Am J Manag Care. 2016;22(9):e317-e322
Coordination of complex patients’ care has great potential for producing savings. Although health information technology (IT) has the potential to help achieve this goal, the types of IT tools available to coordinate care for complex patients are currently limited. Specific study findings include: 
  • Substantial barriers to developing technical capabilities exist and include a lack of knowledge of users’ needs and a lack of standardized roles and responsibilities. 
  • Current tools engage physicians minimally and have challenges integrating with clinical workflows. 
  • For health IT to facilitate coordination of care for complex patients, user needs and workflows must be better understood and used to guide the development of technology and policy.
Arguably, the greatest opportunity to save on healthcare spending in the United States is through more effective care of complex patients—defined as those with multiple comorbidities, high risk for poor outcomes, and high cost.1,2 Given that such patients typically visit multiple providers, improved care coordination is one important means of improving the effectiveness of their care.3-5 Despite this need, the care of complex patients is generally poorly coordinated.6-9 Few interventions have been shown to be effective in addressing the care coordination needs of these patients, and thus, reducing costs.10

Information technology (IT) has been widely adopted outside of healthcare to support coordination among individuals. For example, project management technology coordinates workplace tasks, and configuration management programs help coordinate the work of software developers. However, recent studies have found a relative lack of such technical capabilities in healthcare, despite the existence of many of the components required for such capabilities (eg, cloud computing platforms, widespread use of smartphones, internet connectivity).11,12

Although spending on health IT has increased, little effort has been devoted to developing care coordination technologies for complex patients. In addition, little is known about the latest generation of technologies.13 We sought to understand the key barriers to progress and the technical capabilities (ie, functionalities) at the leading edge of innovation. Building on our findings, we provide suggestions for how to better harness health IT to coordinate care for complex patients.

METHODS

We conducted a series of discussions with experts from a variety of stakeholder perspectives, identifying them through a targeted literature review, recommendations from other experts, and snowball sampling. We selected 35 experts to represent a wide range of stakeholder perspectives from the private sector, academic institutions, and federal agencies. We conducted 2 phases of in-depth discussions, ranging from 45 to 90 minutes, using a guide that identified key topics to be covered, including IT capabilities for care coordination. After the first phase, we convened a technical expert panel to discuss the preliminary results and refine a second phase of expert discussions. The second phase focused on IT capabilities designed to facilitate care coordination through communication among providers caring for the same patient.

From the expert discussions, we identified key themes, including barriers to progress and types of technical capabilities that overcome these barriers. We then identified potential opportunities for further advancing care coordination IT tools to better meet the needs of complex patients and their care teams.

This study was approved by the RAND Institutional Review Board and all discussion subjects gave informed consent.

Barriers to Innovation

Experts identified 4 key barriers to the development of new IT tools for care coordination.

1. Defining coordination. The types of coordination needs, and activities that address them, are poorly understood, which makes it difficult for IT designers to create solutions. Even members of our technical expert panel disagreed about what activities should be called coordination. Some experts drew a sharp distinction between activities related to coordination versus treatment; in their view, physicians were not a necessary part of coordination. Others believed that such a distinction was unhelpful because many coordination activities are also related to treatment and involve physicians (eg, developing care plans, communicating with other physicians). From their viewpoint, it would be a mistake to not fully engage physicians as users of a functionality that facilitates care team communication.

2. Standardization. The users’ roles, responsibilities, and protocols are not standardized, except in special circumstances, like postsurgical care within an institution.14 The lack of standardized shared definitions for care team membership and associated workflows makes it difficult to operationally establish current care team roles. Even creating names for roles, such as “care coordinator,” is challenging, because they lack universal meaning and the roles change over the course of a patient’s care. Experts described challenges defining user roles even for common tasks: the management of a patient’s problem list—a list of the most important health problems facing a patient, including current and active diagnoses as well as relevant past diagnoses—does not have agreed-upon protocols defining which member of a care team is responsible for updates or corrections. Providers tend to be reluctant to modify problems added by other providers.15,16 Additionally, product design is complicated if users must be able to handle significant diversity, which can include variation among providers’ practice patterns and workflows, and patients’ needs and preferences.

3. Forced change. The use of IT tools for care coordination forces changes in the typical provider workflow. Joint use of a shared platform outside of a patient visit may require a work culture change for providers accustomed to visit-centric care. Including the patient in such communication is also new and unfamiliar.17 Incorporating this kind of work into routine clinical practice may require substantial training and the development of new work processes, such as establishing dedicated time for using the tools, and protocols for identifying and prioritizing patients’ coordination needs.

4. The business case is unclear. Changes in incentives—such as accountable care—may make a better business case for providers to purchase and use care coordination IT capabilities, but the shift to newer payment arrangements has been slow. Even under such incentives, there is no evidence that use of IT tools for coordination will result in enough savings to justify purchasing and using the tools. Part of the challenge is the need to provide a compelling value proposition that takes into account the many types of users (eg, patients with varying conditions, patients’ families, physicians of all specialties, nurses, social workers, medical assistants) that vary both across and within organizations.

Technical Capabilities for Care Coordination

Despite the barriers described above, we identified 5 types of IT tools that can facilitate coordination: care plans, dashboards, patient relationship managers, event alerts, and referral tracking

(Table). Some products combine and integrate these capabilities and focus on certain types of care coordination activities. We found no efforts that were comprehensive care coordination solutions. For some of these capabilities, basic forms are in more widespread use (eg, dashboards of quality indicators, text-based care plans). More advanced functionalities (eg, a goal-oriented care plan that supports communication among all members of a care team, alerts for a range of event types that can be “subscribed” to) are largely still under development or being tested in pilots. Care plans were the care coordination functionality described by experts as being in use most frequently, as well as being the most complex and varied. Other functionalities included dashboard, patient relationship managers, event alerts, and referral tracking. We describe care plans below and provide additional details on this functionality and others in the eAppendix (available at www.ajmc.com).

Experts described several care plan products developed by companies, including several startups, and those as part of research projects. Other experts described the desired functionality based on their experience as leaders in large provider organizations. Below, we summarize the experts’ input on the following aspects of care plans related to health IT: the definition of care plan and its varying content, types of users involved, definitions of user roles and responsibilities, and methods for tracking members of a care team. The eAppendix contains a summary of how care plans supported task tracking and communication among the care team.

Definition of a care plan. We found that the term “care plan” was poorly defined and meant different things to different experts. Experts differed in their understanding of the content and purpose of the care plans within a health IT system: a) static text that described brief action steps: annual ophthalmology visit and foot exam; reach a target weight; take BP every day; b) ability to track gaps in care, such as overdue screening tests, and issue reminders to patient, clinicians, or care coordinator; c) care plan structured around a list of problems, each with an associated goal and its assigned intervention; and d) “dynamic” care plans that are accessible between visits and can be updated (experts did not provide any more detailed specifications).

Types of users. Care plan functionalities mentioned by several experts were accessible to members of a care team and facilitated interactions among them. Users included clinicians, the patient, patient surrogates (eg, parents or children), care coordinators, and social services. Typically, the care plan functionality was designed primarily for use by care coordinators who would work with other supporting services, such as social workers, diabetic coaches, or fitness coaches. Although physicians usually had access to the functionality, they were rarely actively involved in using it, and when they did, the degree of use varied. For example, one startup company found that some physicians wanted to be fully engaged, overseeing the whole process surrounding a surgical episode of care. Others wanted to create the postsurgical care plan, hand it off to the rest of the care team, and not be involved further.

Definitions of user roles and responsibilities. Patients used the care plan functionalities to varying degrees. In some cases, patients were not actively using, or not offered access, to their care plan, partly because experts stated that older, sicker patients often were not interested in using the software to actively manage their care. In other cases, the patient was allowed control of many aspects of the care plan, such as the ability to selectively share specific types of data only with specific team members (eg, patients may not want to share psychological issues with fitness coaches). Some care plans allowed for structured interactions with patients, such as the use of patient assessment surveys that ask about patients’ available resources, goals, and symptoms. These assessments are used in some products to automatically produce or update tasks within the care plan (eg, triggering a care coordinator to give patients educational materials). Experts also described how the care plan functionality defined control and ownership. In one project that used a care plan functionality, only the care coordinator was allowed to edit the care plan; other team members could make suggestions, but could not make official changes. Other care plans are more flexible and allow multiple users to change the care plan.

 
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