Integrated care is a growing trend in health reform, as states seek to improve care quality, health outcomes and patient satisfaction while containing healthcare costs. Executed well, it can solve the problems caused by the fragmented delivery of health and social services, helping to enhance efficiency and patient health while managing spending. By linking primary care, acute care, behavioral healthcare (mental health and substance abuse disorders), and long-term services supports, integrated care introduces holistic models that emphasize the consumer's perspective and make it easier for consumers and their families to navigate the healthcare system.

The process of seamless care coordination is particularly beneficial for those with chronic or disabling conditions who are coping with complex healthcare needs that require multiple services and providers. It also brings significant benefits to dual eligibles—those eligible for both Medicare and Medicaid—who have to cope with the challenges of navigating two administrative, financing, service and provider systems.

The Affordable Care Act (ACA) is driving many new integrated care initiatives, including duals demonstrations (bringing Medicare and Medicaid services together for those who have dual eligibility), health homes for patients with chronic conditions, patient-centered medical homes and Medicaid ACOs (Accountable Care Organizations). At the same time, many states are moving the elderly and people with disabilities—whether they have dual eligibility or not—into managed care for the first time.

Understandably, many in these populations have deep concerns about the unfamiliar managed care models. They often worry about being able to continue accessing their current providers…working with new providers who don't have experience with care models or cultural competency with people who have disabilities or require long-term support…and compromising the privacy of their medical information. To make the new models work, states need to be attuned to consumer concerns—and ensure they are creating programs that meet the needs of their target populations. The most effective way to optimize success is engaging consumers in the earliest stages of concept development and ensuring they participate actively in designing and implementing new integrated care programs.

Why Is Consumer Involvement Critical—and What Do Consumers Bring to the Table?

The primary reason to engage consumers in the early stages of developing integrated care models is to ensure programs address patient concerns—and most importantly, meet both their health and their functional needs. For example, consumer perspectives are critical to understanding fully how the elderly and people with disabilities use the healthcare system, as well as the barriers they face to obtaining optimal treatment and care. These real-world insights can help ensure the new models are designed to reduce or eliminate hurdles and improve access, care and outcomes.

When engaging consumers, their families and consumer advocates in developing integrated care initiatives, it's important to remember the diversity of populations the new models must serve. They must work for people of different ages and with a wide range of different chronic conditions, disabilities, functional limitations and service needs. They must also take into consideration a wide array of environmental factors that can contribute to chronic and disabling conditions, such as housing options and conditions, employment status and availability of family or other support systems. Therefore, it's important that states engage a broad group of stakeholders that are representative of the populations that will be served by the new care models or programs.

Consumer groups are also important to involve because of the significant political influence they can wield at both the state and national levels. These groups can have a tremendous impact on a program's enrollment and, ultimately, its success or failure.

Creating Successful Models Requires a Delicate Balancing Act

To create effective integrated care models that include the frail elderly, as well as people with disabilities, policymakers, providers and payers often must undergo a "paradigm shift" in how they think about the populations they serve—particularly non-elderly people with disabilities. For this segment, the care model is often less about providing medical or clinical interventions and more about ensuring access to support services and systems that help people live and function independently in their communities.

Designing and executing any successful integrated care model at the state level requires states to perform a delicate balancing act between advancing policy initiatives and supporting meaningful consumer engagement. While policies are meant to improve quality and care, they often also are focused on achieving cost efficiencies. Consumer input into model development and implementation must be weighed against the need to manage limited public resources.

Consumers Can Participate in a Myriad of Substantive Areas

There are a number of mechanisms states can use to involve consumers in designing integrated care models. For example, they can run member focus groups, model design workgroups, public stakeholder forums or advisory boards to generate ideas, discuss approaches and gain firsthand knowledge of how they can best serve their target populations. Experience has shown that consumers can contribute valuable insights and suggestions across a range of substantive areas, including:

  • Designing overarching policy concepts and program designs in key areas, such as eligibility requirements and service offerings
  • Developing the model of care, including defining health and functional assessments, addressing continuity of care and provider access issues, building individual care plans, selecting the care team and establishing the roles of various providers
  • Defining the services that will be covered across all areas, such as clinical, non-clinical, facility-based and community-based
  • Identifying appropriate quality metrics and provider reporting requirements
  • Creating efficient administrative processes, such as for grievances, appeals and customer service
  • Setting the rate structure
  • Determining prior approval and medical necessity standards
  • Building and supporting public awareness, outreach and education efforts
  • Determining optimal provider and health plan training requirements

How Have Consumers Influenced Policy Design in the Real World?

The Massachusetts Duals Demonstration is one example of the critical role consumer participation plays in designing and implementing successful integrated care models. The Massachusetts stakeholder engagement model proved so effective that CMS (the Centers for Medicare and Medicaid Services) adopted many of its features as a template for developing similar initiatives in other states. Massachusetts' consumer engagement efforts yielded several examples of important areas in which consumers shaped the design of the program:

  • Consumers identified that Medicare and Medicaid communications were too long, confusing and duplicative. Their feedback led to the unification and simplification of member notices and other communications.
  • Consumers recommended the inclusion of an independent "long-term services and support" coordinator as a key member of an individual's care team, when indicated. They also helped define the role and set the qualifications candidates needed to meet.
  • Consumers strongly encouraged dental and peer support coverage, as well as continuity of care provisions to ensure access to existing providers during the 90-day clinical/functional assessment phase.

Conclusions

For integrated care models to be truly consumer centric and, ultimately, successful, they need to be based on consumer input. To develop solutions that address the needs and issues of target populations, it's essential to have a firsthand view of their challenges, their concerns and their current obstacles to access. By involving consumers in creating integrated care models, states can ensure these new initiatives are successful in attracting enrollees, as well as in achieving their key goals of raising quality, enhancing care and improving patient satisfaction and outcomes.