As our national debate over health care reform continues, with its future, at least in part, likely to be shaped by the election, one thing is clear: There is consensus that we need to move to a more patient- and family-centered health care system. But the key question is how to do it and make it work.

As a leading advocate for health care consumers and families, the National Partnership for Women & Families is, of course, pleased to see health leaders commit themselves and their institutions to putting patients first. We worked hard to make that a central tenet of the historic Affordable Care Act, which is helping to reform the care delivery system to make it more efficient, effective and patient-centered.

But a lot of work to make that happen lies ahead because true collaborative consumer engagement, implemented broadly, would amount to nothing less than culture change for our health care system—and culture change is never quick or easy.
There are two models of patient-centered care. I like to call them the “To Model” and the “With Model.”

The “To Model” of patient-centered care is familiar to most of us. To keep patients healthy or restore their health, well-meaning doctors, hospitals, insurers, and others decide what a patient needs and then find ways to do those things “to” or “for” them. And then we try to figure out how to get patients to comply.

The “With Model,” on the other hand, is more difficult to create but much more meaningful. In this model, providers and patients jointly set care goals and work together to determine the approaches that will yield the best possible results. Patients are involved in decision-making and in the design of their treatment plans. In other words, it’s about getting patients to tell providers and others what they need us to do.

In both models, the training, skills and experience of caring health care professionals is essential to success. But the “With Model” involves the patient from the beginning and is much more likely to lead to better outcomes. To make it work, we need the involvement of patients, families, and consumer representatives in reshaping the way we deliver care. We can’t design patient-centered care without the patient. Patients and families need to be part of a collaborative engagement that drives genuine transformation in attitudes, behavior, and practice. They need to be partners in defining, designing and assessing the care practices and systems that serve them. This model engages patients and families at all levels—from policy to governance, to redesign of care practices, to individual/family engagement, to community involvement.

Many hospitals and other care institutions are working to redesign their care delivery systems. The National Partnership for Women & Families is leading the “Campaign for Better Care,” which encourages consumers, patients and families to partner with health care providers across the country to create the kind of change we all want. But for this to happen, providers have to embrace such a partnership, and move beyond the mindset that they always know best what patients want and need.

We talk with patients, families, and consumer advocates every day to get a first-hand understanding of what they want from a redesigned health care system. Time and again we hear four key concepts:

  • “Whole-person” care.
  • Better coordination and communication.
  • Information and support to help them manage their health.
  • Ready access to their providers.

The foundation for whole-person care is a strong patient-clinician relationship built on trust. But today, too many patients are viewed as a collection of body parts. We need care systems that take into account all the factors affecting a patient’s ability to get and stay well. And we need treatment recommendations that align with a patient’s values, preferences, and life circumstances.

The biggest complaint we hear from patients and their families is the lack of consistent communication and coordination of care. This is particularly—but not only—true for older women and men, because many of them are living with multiple chronic conditions. Older adults with five or more chronic health conditions have an average of 37 physician visits a year, see 14 different physicians, and fill an average of 50 separate prescriptions each year. These patients urgently need their providers to talk to each other and they urgently need better-coordinated care.

There is overwhelming data that the failure to coordinate care causes harm and costs all of us more. That’s why patients and their families want and need a “go-to” person who is available to answer questions, help navigate the system, and help them understand their conditions and how best to take care of themselves. They want help choosing specialists and getting timely appointments. They need their providers to have complete information at the point of care and a system that tracks referrals and results. They want their providers to work as a team, ensuring smooth transitions across settings and providers.

To truly feel like a partner in their care, patients and their families need tools and services that help them manage their conditions. They need to know they will be treated with trust and respect for their preferences, comfort and privacy. And they need to be able to communicate in a system where language, culture, and literacy barriers, as well as physical limitations and cognitive impairment, are taken into account and addressed.

Finally, patients and their families want to be able to get the right care, at the right time, and in the right place—the kind of care that keeps people from getting sicker and prevents medication errors, trips to the emergency department, and unnecessary hospitalizations. That means 24/7 access to care team members. It also means prompt appointments and short waiting times, and access beyond traditional office visits, including e-visits, secure messaging and, when appropriate, telemedicine.

When we truly ask and listen to what patients and families want, we realize they want the very things that will help us achieve better care, better health, and lower costs. It’s also time to realize that redesigning care together is the best way to create a system that meets the goals we all share.

Debra Ness is president of the National Partnership for Women & Families, which leads the Campaign for Better Care.