Patients and families can help reinvent health care

True engagement requires listening and learning, making patients and families partners not just in decisions about their individual care but in designing practices and systems that will work for them.

Debra L Ness
Debra L. Ness

Our nation is currently reinventing its health care system, struggling to meet the imperative to improve care, improve health outcomes and reduce costs. One of the best tools available to improve care is authentic patient and family engagement.

Most agree that patient and family engagement is a good thing, but there is no common definition of what it is, and even less understanding that it can be much more than a worthy goal. Genuine, collaborative patient and family engagement can be a powerful strategy that helps transform the way we deliver care and solve many of the problems that keep us from improving outcomes and lowering costs.

Patients and families don't often get a chance to collaborate with clinicians at the point of care or in the redesign of care practices and systems. Yet patients and their family caregivers have unique insights; they see and experience their care in ways that clinicians and other care providers cannot. It is hard to see how we can design a care system that is truly patient- and family-centered without the insights and guidance of those that system is designed to serve.

For example, at the practice and system levels, many clinicians struggle to improve patient experience scores but may not think to ask their patients to help them understand the scores and jointly develop solutions that will improve the care experience. Visiting policies and rounding practices at hospitals often limit patients' involvement in the care team, and patients and families are rarely involved in discussions about preventing readmissions by directly participating in designing a better discharge and transition process.

At the National Partnership for Women & Families, we've been working to bring patients and families into the redesign of the health care system at every level, from policy to practice to individual care. In doing so, we have seen successes that far exceeded expectations and indisputable evidence that patients and families have the same goals as their clinicians, as well as the same deep desire for better care, better outcomes and lower costs.

This column is the first of several this year in ACP Internist that will focus on the patient experience. In coming months, we will share stories from both the patient and clinician perspectives. We'll talk about successes as well as bumps in the road, and the many lessons we've learned along the way. We'll share the steps clinicians can take in their own practices to make patient and family engagement a worthwhile tool, as well as the challenges clinicians may face in this process and ways to overcome them.

This work begins with a common understanding of what collaborative patient and family engagement is, and what it isn't. It isn't better ways for clinicians to convince patients to change their behaviors. It isn't ways to make patients more compliant. It isn't ways to “fix” problem patients, or arm patients with tools to protect themselves from the system. It's about doing things with rather than to or for patients and families. Collaborative patient and family engagement is an authentic give-and-take between clinicians and patients that educates and benefits both parties.

Even the most dedicated clinician cannot understand the totality of his or her patients' lives, their struggles and the pressures they face, and what they want and need. A clinician may never have felt the embarrassment of saying she can't afford her prescriptions or doesn't understand the instructions. She may never have faced the dilemma of losing pay or putting her job on the line to stay home with the flu or take an ailing parent to the doctor.

Patient- and family-centered care is impossible without the involvement of patients and families. True engagement requires listening and learning, making patients and families partners not just in decisions about their individual care but in designing practices and systems that will work for them. Through this column, by sharing these stories, we hope to help create a better, more collaborative health care system.