Valuing patient and family input in health care

Current efforts of clinicians, hospitals and researchers to make health care more “patient-centered” include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. These invitations and our acceptance of them often result in confusion and disappointment for everyone, regardless of good intentions. What do patients know about the inner workings of health care, after all?

There seems to be a misunderstanding (by all parties) of the specific expertise and value we can bring to any advisory conversations. Disappointment comes (to all parties) when our true expertise is not recognized or sought, or is not deemed valuable or ignored once offered.

The aim of our participation — regardless how distal our advice is from that in-person encounter between us and our clinician — is to make it easier for us to make the best possible use of our health care to achieve the greatest benefit for ourselves or a loved one.

Here’s the problem: For the majority of us, health care consists of services, technologies, procedures and expert advice that are deployed to increase our chances of living rewarding lives free of suffering. But health care is only one strategy we use to reach this aim. Family, friends, work, school, Little League coaching, the Methodist Church, the local dachshund club and the occasional diet … Each of these also contributes to our aim of living long and well.

We rarely become experts in the strategies we use to reach our aim. We are not, for example, conversant in the sociology of North American kinship relations nor are we familiar with how Little League is organized and funded in the U.S. Likewise, we don’t know about the economic, professional and political organization of health care. We operate on a need-to-know basis. That is, we learn what we must know about each of these strategies so that we can accrue from them what will help us live interesting, comfortable lives with those we love.

We know little about health care per se, i.e., how biomedical research is designed, conducted or funded and how the findings make their way (or not) into the practice of medicine. We are largely clueless about health insurance, even our own. We don’t really understand what the differences between managed care, preferred provider and fee-for-service health plans mean for us. We don’t know about the limits of HIPAA or the troubles implementing electronic health records.

Even those of us who have spent years working with our clinicians to care for our chronic conditions (or those of our kids or our parents) focus on what is needed now — today — to reduce our/their suffering. We are not curious about the back-office machinations of physician practices or hospitals or the organization of care delivery except insofar as it affects our ability to get what we need in a timely, safe, cost effective way.

Sure, all of us know that health care is in turmoil, that it is expensive and complicated. But most of us don’t believe we have anything to contribute to addressing those problems … note our low response rates on even those minimal patient satisfaction and experience questionnaires.

And so when we are invited to act as expert patients — to recommend to researchers what questions to study and what outcomes to measure or to advise a clinic or hospital about patient-centered care — we are truly challenged. What we have to offer is often viewed by others and ourselves as trivial, shallow, unique to our personal situation or too naïve to be useful. Even those of us who are trained as health professionals or researchers struggle when participating as advisors. While our contributions may be more informed and sophisticated than some patients, our education guarantees neither the ability to imagine beyond our personal experience nor a perspective free of bias.

Given this, how can our expectations and the demands placed on us in the role of patient advisor be more closely aligned with the needs and expectations of those who ask for our help?

Here are some observations:

Our goals for health care are different from those of clinicians, payers, researchers and administrators. Our role is not to help others save money or get a grant. Rather, our role is to identify what we need to find and make good use of safe, effective care for ourselves and our loved ones. This is where our expertise resides. We are better able to contribute when this focus is explicit.

Our expectations about the advice we have to offer are often as off-target as those who seek our advice. We frequently feel ignorant and ill-informed in the presence of professional expertise and authorities and are often disappointed by our inability to contribute in kind. Similar disappointment on the part of leaders and professionals seeking our advice is evidence that they haven’t set appropriate expectations or provided sufficient context/background for us to succeed.

Like most health professionals, we don’t know what patient-centered care actually is nor have we considered what patient outcomes should be included in research studies. But we have a clear picture of the constituent parts of both. We know when we experience personalized care that meets our needs and we are keenly aware when it falls short. Most of us carry a basket of stories about what has worked and not worked for us — interactions and experiences common to patients with a particular disease or who receive care in a particular clinic or hospital.

Creative efforts to develop and provide guidance for those who aspire to incorporate meaningful patient perspectives are ongoing. The AHRQ-sponsored Community Forum project conducted by AIR has started to report some of its findings. The Institute for Patient- and Family-Centered Care has, over time, learned the painstaking steps of including patients and families in institutional advisory groups and provides training for those ready to try it. PCORI is committed to patient participation in every step of the proposal development, project conduct and dissemination, although strategies for inclusion are at an early stage. And of course, guidance from locally-based groups and individuals is emerging about how to increase the likelihood of successful patient and caregiver advising.

Regulations and mandates that patients and caregivers take on advisory roles now make invitations for our participation in advisory roles common. Despite the growing body of knowledge and experience, however, many of these efforts remain meaningless exercises. Even those who are deeply committed to including patient and caregiver perspectives sometimes fail to grasp how fundamental our active and knowledgeable participation in our care is to the success of the health care enterprise.

This is the point of every piece of advice we are asked to contribute, whether it is about basic research priorities or the need for a grand piano in the lobby of the hospital: How can barriers to our active, knowledgeable participation in our health care be removed? How can actions we take to use the tools of health care to help us live long and well be more informed and supported?

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

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