Editor’s Note: In addition to Carol Levine (photo and bio above), authors of this post include Eric Coleman, Professor in the Division of Health Care Policy and Research, University of Colorado Denver School of Medicine; and Mary Naylor, Director of the New Courtland Center for Transitions and Health, University of Pennsylvania School of Nursing.

The opportunity for significant system redesign in Medicare now lies in a new entity created by health reform legislation. By January 1, 2011, the Center for Medicare and Medicaid Services (CMS) must create a Center for Medicare and Medicaid Innovation (CMI) designed to “test innovative payment and service delivery models to reduce program expenditures … while preserving or enhancing the quality of care.” In selecting the models to be tested, the Secretary of the Department of Health and Human Services (HHS) “shall give preference to models that also improve the coordination, quality, and efficiency of health care services.”

CMI’s mandate to reduce program expenditures is a critically important goal. But it is not a goal that can be achieved in isolation. Paying providers differently will not remedy the widespread and serious failures of care coordination and patient safety that are driving avoidable and costly hospital readmissions. Paying salaries instead of fee-for-service or bundling payments is only going to save money if patients and families participate fully in these innovations and are well served by them.

There is little in the health reform legislation that recognizes the complexities of providing care to its target population—vulnerable beneficiaries at risk of hospitalization and avoidable rehospitalization—or offers opportunities to serve them better. Most of these high-risk, high-cost beneficiaries are not now getting high-quality care; if they were, there would be no need for innovation and no concern about avoidable hospital readmissions.

The legislation recognizes the need for a well-functioning system of basic primary and geriatric care but does not consider it essential for CMI funding of innovative projects. Among the “additional factors” CMI may (but doesn’t have to) consider in funding are whether the model “places the applicable individual, including family members and other informal caregivers … at the center of the care team.” Another additional factor is “whether the model provides for the maintenance of a close relationship between care coordinators, primary care practitioners, specialist physicians, community-based organizations, and other providers of services and suppliers.”

Patient-Centered Care And Coordination Should Be Foundational, Not Optional

In our view, these should not be optional priorities. They should be the starting point. But the language of reform means different things to different people. For example, providers may understand care coordination primarily as the exchange of clinical health information among professionals — and they don’t even do that consistently or effectively. Patients and families understand care coordination as a broader responsibility—sharing and updating clinical information, to be sure, but also arranging transportation to get to the doctor’s office, making sure that home care services and equipment are in place after a hospital discharge, and managing an ever-increasing list of expensive medications, with all their risks as well as benefits. And doing this across multiple sites and providers.

CMI’s target population includes individuals with “multiple chronic conditions and at least one of the following:

(I) An inability to perform 2 or more activities of daily living.

(II) Cognitive impairment, including dementia.”

These deceptively straightforward criteria fail to convey the complex care needs of Medicare and Medicaid patients in this population. Consider, for example, these hypothetical patients:

  • Mrs. Smith, eighty-five , has congestive heart failure (CHF), hypertension, and severe arthritis. She needs help getting out of bed, going to the bathroom, and getting dressed. She sees five different doctors and takes twelve prescribed medications daily, as well as several over-the-counter supplements. She has been hospitalized twice in the past year for episodes of CHF. Although she hasn’t been diagnosed with dementia, she is forgetful and often agitated.
  • Mr. Jones, eighty, has high cholesterol, hypertension, and chronic obstructive pulmonary disease (COPD). He still smokes cigarettes, despite repeated warnings and a short-lived disease management program. He needs help making his meals and cannot manage any of his own finances or doctor visits. He is on eight daily medications, which he frequently skips because he claims they make him feel worse. He has been diagnosed with Alzheimer’s disease. Twice in the past six months, he ended up in the emergency department after he fell while chasing a bus to visit his wife in a nursing home, where she died a year ago..

Both Mrs. Smith and Mr. Jones are able to stay at home only because they have family caregivers (Ms. Smith’s husband and Mr. Jones’s daughter) who, despite their many other responsibilities and personal health problems, manage their family members’ medications, organize all their care needs, and communicate with a variety of health care professionals and services on their behalf. This takes a great deal of time and patience, as well as knowledge of how to connect disconnected service providers.

Mrs. Smith and Mr. Jones are typical of older people with multiple health care needs. They are not a geriatric tabula rasa onto which health education, self-management, and behavior change can be imprinted. That approach has been tried at great expense and found wanting: a large-scale Medicare-funded demonstration project failed to save money and improve quality overall.

Medicare beneficiaries have lifetimes of health behavior and encounters with the health care system that influence their attitudes, beliefs, and expectations. They and their family caregivers need much more personalized and flexible care, based on ongoing communication and active participation in ensuring that their health goals and constantly changing needs are elicited, addressed, and met. Many family caregivers are themselves Medicare beneficiaries, vulnerable not only to conditions common to aging but also to physical and mental health risks associated with caregiving. They, as well as the designated beneficiary, would benefit from a significant investment in appropriate care.

A series of focus groups and a national survey of patients with chronic illness revealed priorities centered on whole-person care, comprehensive communication and coordination, patient support and empowerment, and ready access. Patients and families want clinicians to talk to each other and to talk to them. Without patient and family caregiver input into model design, a feature notably lacking in the CMI legislation, these priorities will not be part of medical homes or accountable provider organizations, however they are constructed.

Meeting Patients And Families Where They Are

Patient-centered care for patients like Mrs. Smith and Mr. Jones should acknowledge and build on their own and their family caregivers’ strengths but should also recognize their limitations. In our experience working with chronically ill patients and their family caregivers, we have learned that listening to them is as important as talking at them. We need to pay close attention to their health care needs as they see them and understand their barriers to accessing the health care system (for example, user-unfriendly phone systems, long waiting times for appointments, inappropriate use of HIPAA by providers to withhold information, and difficulty paying for and managing multiple medications). We should meet patients and family caregivers at their levels of health literacy and ability to navigate complex systems, and in the context of their economic and social histories. Chronic disease affects the whole family; family dynamics, cultural practices, and other factors must be built into the care plan.

These principles are at the core of our work: the Care Transitions Program developed at the University of Colorado Denver (Coleman), the Transitional Care Model developed at the University of Pennsylvania School of Nursing (Naylor), and the United Hospital Fund’s Next Step in Care campaign (Levine).

Furthermore, the “close relationship” among all providers envisioned in the legislation is just that—a vision, not a reality. Even in many so-called integrated systems, providers are separated by setting, discipline, culture, leadership, billing, and other factors. In the United Hospital Fund’s new Transitions in Care-Quality Improvement Collaborative (TC-QuIC), several providers from hospitals, nursing homes, and home care agencies working in partnerships across settings have reported that although they routinely share patients, they have never before worked together in a systematic way to improve transition processes.

The Way Forward

Given the flexibility in the legislative language, CMI has an opportunity to test significantly different ways of organizing care. We recommend that its leaders consider:

  • placing a high priority for funding on models that demonstrate patient-centered care and coordination;
  • requiring applicants for funding to demonstrate that their approach has the potential not only to save money but also to improve (not just preserve) quality of care;
  • recommending that applicants demonstrate that they have consulted patients and family caregivers, or their representatives, in designing, implementing, evaluating, and disseminating their models;
  • inviting patients and family caregivers, or organizations that represent them, to review proposals for CMI funding; and
  • considering as part of program evaluation how well the model meets the health needs of family caregivers who are also Medicare beneficiaries, as a step toward making care truly family-centered.

The creation of a CMS center focused on innovation is an opportunity to reach beyond conventional and ineffective ways of providing and coordinating care to high-risk beneficiaries and their family caregivers. By definition, innovation means doing things differently. Putting patients and families first would be a major innovation.