Chronic diseases--such as heart disease, cancer, and diabetes--are placing a growing burden on the U.S. health care system. In response, some health care organizations are instituting chronic disease management (CDM) programs to reduce the incidence of preventable hospitalizations and adverse events by more effectively and comprehensively managing the health of patients with chronic conditions. Many of these organizations are implementing health information technology (health IT) to facilitate their chronic disease management programs.
The Agency for Healthcare Research and Quality (AHRQ) has funded a broad portfolio of research projects to foster innovation in using health IT to improve care for patients with chronic diseases. This brief highlights early observations from 13 of these projects that incorporate the use of health IT in their programs and focus on the following implementation considerations:
- Types of health IT applications used in CDM programs.
- Implementation of technology solutions.
- Use of multidisciplinary care teams and staff.
- Health IT adoption and change management.
- Usability and system design.
- Facilitating collaboration for patients and providers.
- Sustainability of health IT efforts for chronic disease management.
Types of Health IT Applications Used in CDM Programs
Lesson 1: Grantees are using a variety of health IT applications -- and combinations of applications -- to address different aspects of CDM.
AHRQ grantees have incorporated the following technologies in their chronic disease management programs:
- Clinical decision support (CDS) systems help providers to interpret clinical results, document patients' health status, and prescribe medications through the use of alerts, reminders, and customized data entry forms.
- Health information exchanges (HIE) allow organizations to share information across organizational boundaries. Such systems enable all participating providers in a community to access patient information, thereby helping them to provide better patient care.
- Disease registries capture and track key patient information to assist care team members in proactively managing patients.
- Patient-centered applications such as patient portals, personal health records (PHRs), and integrated voice response (IVR) systems are designed to educate patients about their disease, their medications, and how they can self-manage chronic conditions such as diabetes, hypertension, or heart disease.
- Electronic health records (EHRs) with integrated decision support and chronic care management tools help providers manage patient information and monitor health outcomes for patients who are undergoing treatment for chronic diseases. EHRs integrated with laboratory and pharmacy information systems can supply import information to support EHR CDM functions.
- Telehealth applications that remotely connect providers and patients in co-management of chronic diseases. Remote monitoring devices and electronic health records are components that extend traditional Telehealth networks to provide enhanced CDM functions for patients and providers.
Implementation of Technology Solutions
Lesson 2: Significant investments of time and resources are required to configure both off-the-shelf vendor products and internally developed technologies to meet stakeholders' needs.
An initial question that every health organization must answer in implementing projects for emerging areas of health IT-enabled care is whether to buy a commercially available product or build a customized application. Regardless of which approach is taken, a significant investment of time and resources is required to configure IT systems to perform the functions desired by stakeholders. A few of the AHRQ-funded CDM projects opted to purchase software or equipment off-the-shelf from commercial vendors; others developed their solutions internally. Many of the examples below illustrate issues grantees faced when working with off-the-shelf solutions to implement their chronic disease management programs.
- There are few commercial off-the-shelf (COTS) solutions that provide comprehensive functionality to support CDM programs. Consequently, few AHRQ grantees implemented COTS systems: only four of the thirteen AHRQ-funded CDM projects purchased COTS solutions.
- None of the COTS technologies purchased by grantees were designed specifically for chronic care. As a result, each of the four grantees that adopted COTS systems needed to modify their systems to support their CDM requirements.
- Of all health IT applications used by the AHRQ-funded CDM projects, clinical decision support systems required the highest degree of customization. Grantees resourced customization efforts with both IT staff and clinicians, with one grantee dedicating 50 percent of a physician's time to the effort. The resources and expertise needed for implementing CDS systems should be carefully considered so that clinician and staff time is effectively utilized.
- Grantees experienced discrepancies between COTS system vendor promises and delivery in both system functionality and delivery schedules. The lack of maturity in COTS solutions in this area led one grantee organization to adopt a system in the Beta stage of development. This necessitated that project staff members spend significant amounts of time testing and revising the system before it could be implemented. Grantees recommend that organizations considering COTS systems balance a vendor's claims with the experiences of the vendor's other customers, and that organizations should build penalty clauses into vendor contracts.
- Projects should research the availability and cost of vendor technical support. In the grantees' experience, vendors often have technical support available only during business hours and have delayed response times and higher costs for support provided outside of business hours. A more comprehensive support agreement may be needed to ensure after-hours access. One project's vendor did not return phone calls after 5:00 p.m. or on weekends, even though the project often experienced problems at these times. Depending upon the scope of the implementation, it may be important for a project to have its own trained support staff rather than relying solely on vendor resources.
- For projects that have focused needs and access to technical resources, open source solutions may provide a cost-effective mechanism for implementing CDM solutions. One grantee found that the costs and capabilities for the standard technology components for an HIE exceeded the project's scope and budget. It made this discovery after soliciting bids for a system to share clinical data relevant to chronically ill patients among community providers. Instead of purchasing a commercial solution, the project used available internal development resources to build an appropriate HIE infrastructure using open source software and information from the published literature.
- Grantees considered their access to technical resources in deciding whether to develop solutions internally or customize vendor solutions. One grantee had initially planned to develop a custom solution but then determined that the amount of resources required to develop and maintain the product exceeded the cost of purchasing a vendor solution. In addition, this project had limited access to technical staff in its geographic area.
Use of Multidisciplinary Care Teams and Staff
Lesson 3: Chronic disease management health IT applications may enable the re-distribution of patient management tasks to non-physician personnel.
Many health IT solutions for chronic disease management are intended primarily for physician use. However, these systems also can be designed to engage other key members of the health care team in decision-making, such as nurses and case managers. The AHRQ-funded CDM projects are deploying health IT applications to non-physician personnel to assist in the management of patients with chronic diseases.
- Nurse Educator: One project sought to improve the project site's performance on CMS core measures for chronic heart failure (CHF) patients by providing IT-enabled patient education. The hospital created a new staff position, a full-time nurse educator, to help coordinate care and educate patients with CHF and other conditions about self-management. The hospital information system alerts the nurse educator when a chronically ill patient is admitted. The alert prompts her to attend bedside meetings with other members of the care team and to educate the patient directly about how to perform self-care after being discharged from the hospital.
- Nurse Case Manager: Two projects use nurse case managers to triage clinical decision support alerts for patients with chronic conditions. Instead of sending alerts and reminders to physicians, the CDS system sends the messages to nurse case managers who help sort through issues that are not an immediate priority, such as non-emergency alerts.
- Case Manager: Another project uses case managers, employed by the State's Medicaid office, to triage CDS alerts for some patients. Specifically, the system identifies patients who miss appointments or have not had a hemoglobin A1-C (HbA1C) test in over a year, (HbA1C is a recommended marker for the effective management of diabetes over time). The system can automatically generate letters to patients from clinics and the Medicaid system, and it can easily notify providers when their patients have been hospitalized for an issue related to their chronic illness.
- Non-Clinical Assistants: An integrated delivery network uses non-clinical assistants to review incoming secure messages from patients and to forward them to the appropriate clinical staff for response. This prevents overloading of physician inboxes with questions that other providers could answer. The same assistant can monitor when providers respond to ensure that patient questions are answered in a timely manner.
Health IT Adoption and Change Management
Lesson 4: Securing user buy-in and trust is critical to the success of health IT implementations.
A review of AHRQ-funded CDM projects yielded several preliminary findings about how to incorporate adoption of IT solutions into routine clinical practice.
- Short-term health IT solutions may be put in place to fill a need while long-range system design plans are under development. One project set out to convene community stakeholders to form a regional health information exchange. Initial conversations with several smaller physician practices revealed an immediate need for improved regional referral processes. The project team decided there that the existing infrastructure provided enough overlap to support a rudimentary (but useful) referral system and a CDM system.
These systems were implemented immediately and were enthusiastically adopted by clinicians. At the same time, a master patient index (MPI) and other components of an HIE to support the CDM needs were developed and tested. The project now has a working data exchange that enables regional providers to easily refer patients and receive feedback on referral encounters. Once final agreement is reached on other aspects of clinical data exchange, the project will expand to facilitate sharing of additional forms of clinical data.
- Another project learned that, to be successful, it is important to engage clinicians who are directly involved in the delivery of patient care in the development of practical electronic templates. Standardized templates that have been created in a research environment or larger integrated delivery network could run the risk of being inadequate to secure clinician buy-in and adoption in other settings.
- More features and equipment do not always translate to better care. This is particularly true for applications developed for patient use, such as integrated voice response (IVR) and patient portals, which can become so complex that they discourage user adoption. AHRQ projects that utilized patient-centered applications discovered that it was important to keep the user interfaces and options as simple as possible.
Usability and System Design
Lesson 5: For both patients and providers, usability and system design are key factors driving the adoption and use of health IT systems to improve CDM.
AHRQ-funded CDM projects faced a number of usability challenges. Several projects discovered and emphasized that testing is of critical importance. To ensure the system is designed to optimize usability, a project needs to "test, test, and then test some more." Pilot testing with a subset of users enabled several projects to discover problematic issues related to workflow and system functionality. Several projects used an iterative design process to help eliminate major workflow and system issues before rolling their projects out to large groups of clinical staff.
- Two projects learned through initial testing that the first versions of their health IT systems did not integrate well into clinical workflow. During testing of a template designed to capture pediatric obesity information, the small group of physicians involved reported that, although they loved the template, it was hard to find within the organization's electronic health record (EHR) system. Investigators worked closely with the EHR system staff to better integrate access to the template into existing patterns of EHR use.
- Another project discovered problems with its clinical decision support algorithm during a pilot test and returned to development to solve the problem. Testing also revealed that many of the project's remote monitoring devices did not work properly.
- Aligning health IT projects with stakeholders' priorities is also crucial to their success. Pilot testing and post-implementation analysis can offer insights into usability and adoption from a small subset of individuals before undertaking a larger rollout. For pilot-testing, it is important to select a pilot group of enthusiastic and IT-ready end users who are willing to work through the early phases of implementation and provide valuable feedback. Upon working through the "kinks" of the initial implementation during a pilot, a project also must validate that the pilot group accurately represents the majority of end users on a project from technology-savvy individuals to those less familiar with computers.
- Health IT solutions need to be tailored for the end user to improve usability and avoid "information overload." One project faced a huge task of incorporating information on thousands of medications into its patient-focused application. Patients at the project's renal practice took on average 11 different medications. The project narrowed the list of medications to be included in the application to those most frequently prescribed. Although the volume of information was still large, it was more manageable and required less input from end users who were often very ill and/or possessed limited computer skills.
Facilitating Collaboration for Patients and Providers
Lesson 6: Health IT can enable opportunities for remote patient management, patient education, and provider information-sharing for patients with chronic conditions.
The AHRQ CDM projects have used health IT to help both providers and patients access up-to-date information concerning clinical practice, medications, and treatment options. Some examples of the ways that the projects are using IT to educate patients and providers are described below.
- One project's telehealth network helps primary care physicians receive up-to-date information about clinical practices for chronic conditions. Physicians also can interact with other primary care physicians and specialists at the closest academic medical center to discuss complex cases. The group environment of the telehealth network enables physicians to learn from one another. The telehealth network also educates nurses and office managers about processes for teaching patients about self-management of their chronic illnesses. Telehealth also can be used to provide education directly to patients if providers choose to integrate this technology into their clinical workflow.
- Technology can alert medical staff when a patient needs educational interventions. This may assist organizational efficiency, while ensuring that patients get the information they need. One project employed a clinical decision support system to notify a nurse educator when a chronically ill patient was admitted to the hospital. The educator then scheduled time to work with the patient's care team and to educate the patient directly about self-management.
- Another project implemented an interactive voice response (IVR) system that patients can use in their homes. Through a telephone, the IVR provides health data to a central IT system and sends feedback to the patient based on decision support logic. The computer-generated feedback helps patients better understand what changes in their health status should prompt them to seek advice or treatment from their physician.
Sustainability of Health IT Efforts for Chronic Disease Management
Lesson 7: To obtain additional funding from health care executives, payors, or through grants, health IT projects will need to demonstrate return on investment or alignment with potential funders' strategic goals.
The AHRQ projects received limited-term funding, and thus needed to identify mechanisms for sustaining their health IT applications. Some projects are planning to complete implementation, transitioning into an operations and maintenance mode. However, many others intend to expand their scope. While a challenge, the projects report that sustainability may be achieved when organizations and communities make CDM a top priority for the future and are able to demonstrate improved clinical management of their patients. Below are some examples of how projects plan to continue activities after the end of their AHRQ awards.
- Many payors are interested in innovative approaches to chronic disease care because of its impact on health care costs. Aligning HEDIS (Healthcare Effectiveness Data and Information Set) and CMS measures with health IT projects allowed several grants to demonstrate that health IT systems can impact these measures to improve health care quality. One project worked with its State government to develop a pilot project testing the capacity of EHR and clinical decision support systems to report key measures for their Medicaid population. This information is transmitted to care managers and health-risk management professionals, who can then respond appropriately. The pilot project demonstrated that the system was more efficient and timely in its reporting of CMS measures than the current State reporting process. The project team is now working with the State to implement their process statewide.
- Some grantees are working with payors in their area to investigate opportunities for Health IT-based reimbursement policies and pay-for-performance (P4P) initiatives. One project worked with physicians, the provider organizations, and local payors to reach agreement on the reimbursement process for physicians' use of secure messaging. Another project is working with payors who are interested in exploring P4P initiatives by seeking to demonstrate how its quality dashboard for chronic diseases can help providers and payors to measure the quality of care provided to these patients.
- Improving care for chronically ill patients provides benefits not only to patients but also the community. Several AHRQ-funded projects have achieved sustainability forchronic care initiatives by securing support from community organizations. An HIE project secured support from public health agencies, as better CDM provides value beyond a single organization. The same project partnered with school nurses to support asthma treatment for children and received funding from the CDC to do additional research on this chronic condition. Community relationships take time to build, and they require energy to sustain. However, integration of one innovative project has led to possible expansion statewide to provide greater quality to a larger population. Many investigators spoke about the need for continued support for innovative uses of health IT for chronic care, and they advocated that these interventions can target the populations that are the sickest and the neediest and that consume the most health care resources.
Measuring the Impact of Chronic Disease Management Health IT Solutions
The AHRQ -funded projects listed below are measuring the impact of health IT on health care quality, safety, and efficiency in managing patients with chronic disease.
- Clinical Decision Support (CDS)
- Trial of Decision Support to Improve Diabetes Outcomes (Randall Cebul; Cleveland, OH)
- Improving Pediatric Safety and Quality with Health Care IT (Timothy Ferris; Boston, MA)
- Disease Registries
- Santa Cruz County Diabetes Mellitus Registry (Eleanor Littman; Santa Cruz, CA)
- Electronic Health Records
- Statewide Implementation of Electronic Health Records (David Bates; Boston, MA)
- Evaluating Smart Forms and Quality Dashboards in an EHR (Blackford Middleton; Boston, MA)
- Health Information Exchange
- The Chronic Care Technology Planning Project (John M. Branscombe; Presque Isle, ME)
- New Mexico Health Information Collaborative (Maggie Gunter; Albuquerque, NM)
- Showing Health Information Value in a Community Network (David Lobach; Durham, NC)
- Patient-Centered Applications
- Home Heart Failure Care Comparing Patient-Driven Technology Models (Lee Goldberg; Billings, MT)
- Patient-Provider Electronic Messenger in Chronic Illness (James D. Ralston; Seattle, WA)
- Project ECHO Extension for Community Healthcare Outcomes (Sanjeev Arora; Albuquerque, NM)
- Telewoundcare Network (Charles A. Bryant; Oklahoma City, OK)