Category Archives: Patient-centered care
Gretchen Hammer, MPH, is executive director of the Colorado Coalition for the Medically Underserved. She works with local and state health care leaders and policy-makers to improve Colorado’s health care system.
Healing is both an art and a science. On one hand, clinicians are intensely driven by the quantifiable, the measurable, and the evidence-based algorithms that lead to accurate diagnosis and treatment as well as allow us to develop new innovations in medicine. However, healing is also an art. Patients are not just a collection of systems that can be separated out and managed in isolation of the whole patient. Each patient and their family has a unique set of values, life experiences, and resources that influence their health and ability to heal. Recognizing the wholeness and uniqueness of each patient is where the art of healing begins.
Empathy is defined as “the ability to understand and share the feelings of another.” It takes presence of mind and time to be empathetic. For clinicians, finding the balance between the necessary detachment to allow for good clinical decision making and empathy can challenging. This balance can be particularly difficult for students and new clinicians.
“Prescribe the right drug to the right patient at the right time” is not a new medical practice, but when a biomarker—that is, a measure of disease pathophysiology—or a gene makes this decision, that is a radically new medical practice. The promise of personalized medicine is that biomarker and gene driven algorithms will do much of the work of medicine. By predicting patients’ future health and the outcomes of an intervention, they will guide what doctors recommend to their patients. Like the theory of evidence-based medicine, personalized medicine promises a more objective, efficient and precise medical practice.
To date, personalized medicine has largely flourished “below the neck,” that is, in the care of patients with common medical diseases, particularly cancer and cardiovascular disease. In the last two decades though, the National Institutes of Health, the pharmaceutical industry, and researchers have invested substantial time and money in research such as the Alzheimer’s Disease Neuroimaging Initiative (called “ADNI”) dedicated to discovering and validating the biomarkers and genes that predict whether a brain will fail. This research is beginning to reshape how we talk about the diagnosis and treatment of the aging brain, an organ that is more and more, like hearts and bones, regarded as an organ “at risk.” As a result, clinicians, ethicists, and health care policy-makers are beginning to ask how we should practice personalized medicine for the seemingly healthy brain that is at risk for neurodegenerative dementias such as Alzheimer’s, Parkinson’s, Lewy Body Disease and frontotemporal lobar degeneration.
Benjamin Roman, MD, is a Robert Wood Johnson Foundation (RWJF) Clinical Scholar in residence at the University of Pennsylvania and a senior fellow at the Leonard Davis Institute of Health Economics. This is part of a series of essays, reprinted from the Leonard Davis Institute of Health Economics’ eMagazine, in which scholars who attended the recent AcademyHealth National Health Policy Conference reflect on the experience.
The term “patient-centered" has become something of a mantra in the nation’s current health reform efforts. There’s widespread agreement—at least in theory—that putting the patient at the center of everything is important but, as demonstrated in discussions at the recent AcademyHealth National Health Policy Conference, there is no exact blueprint for how to accomplish that.
Patient-centeredness means many things to many different people, but at its core are issues of shared decision-making and balancing how much the patient should really be in the driver’s seat. Patients want more information, but too much is overwhelming. They want to be nudged to do the right thing for their health, but not nagged. They want to choose health care wisely, but they don’t necessarily want less. Doctors want to involve patients in decision-making but don’t know how, or what evidence to use for the discussion.
Following a study that found serious gaps in advance care planning for decisions about serious illness, Robert Wood Johnson Foundation/U.S. Department of Veterans Affairs Physician Faculty Scholar Rebecca L. Sudore, MD, has launched an online resource to help patients prepare to make complex medical decisions. Sudore, who led the study, saw a need for an easy-to-use tool , beyond an advance directive form, that could help prepare patients to identify what is important to them in life, communicate their wishes with others, and make informed medical decisions.
PrepareForYourCare.org is a free, easy-to-use online resource that guides patients through all the steps of advance care planning, and incorporates content directly from Sudore’s study. It is written at a fifth-grade reading level, includes voice-overs of all text and large fonts for the visually impaired and closed captioning for the hearing impaired.
More importantly, PREPARE shows people, through videos and a step-by-step process, how to have the conversation and make informed medical decisions.
Robin Newhouse, PhD, RN, is a grantee of the Robert Wood Johnson Foundation Interdisciplinary Nursing Quality Research Initiative. She is professor and chair, Organizations Systems and Adult Health at the University of Maryland School of Nursing. She is also vice-chair of the Methodology Committee for the Patient-Centered Outcomes Research Institute. This post is part of the "Health Care in 2013" series.
My resolution for the U.S. is to begin the transformation of health care systems to enhance high quality patient-centered care. Despite some improvements, the National Healthcare Quality Report 2011 reveals that health care quality in the U.S. often falls short of expectations—demonstrating geographic and population (minority and low-income) variations. In 2011, the U.S. Department of Health and Human Services (HHS) released the National Quality Strategy (NQS), designed to improve the quality of health care in the U.S. My highest priority for action is the first aim: “Better Care: Improve the overall quality of care, by making health care more patient-centered, reliable, accessible, and safe.” Better care is achievable—with two specific strategies in mind: implementation of evidence-based practices and a focused goal to measure and improve patient-centered outcomes.
Implementation of Evidence-Based Practices. We have not gone far enough, fast enough. It is time to focus on implementation of evidence-based practices in health care systems. Research studies have continued to exponentially produce results intended to inform health care practices. Identifying and implementing evidence-based practices known to work—but that are underutilized—can go a long way to improve health care processes and quality. Performance measures are an example of one approach to drive system changes. The 2012 NQS Annual Progress Report describes the achievements of the first year’s work, including a focus on clinical and patient-reported outcomes (as close as possible to patient-centered) and development of new patient-centered outcomes.
A member of the Navajo Nation, Lisa Palucci, MSN, RN, is a nurse consultant at the Centers for Medicare and Medicaid Services and a fellow with the Robert Wood Johnson Foundation Nursing and Health Policy Collaborative at the University of New Mexico. This post is part of the "Health Care in 2013" series.
As the nation trudges forward in its quest to improve health care access for all Americans, I think it is essential that we continue to make progress in decreasing the health disparities and social determinant of health gaps that continue to be ignored in mainstream health policy initiatives. Throughout the course of my PhD program at the University of New Mexico (UNM), we have had numerous opportunities to experience nursing and health policy in action by attending national conferences, meetings, and orientation programs. To my disappointment, discussion about improving health disparities and social determinants of health are seldom a topic on the agenda. This poses the question: Aren’t the health disparities and social determinants of health what got us to the point of an inequitable health care system in the first place?
By Jennifer L. Wolff, PhD, and Robert Wood Johnson Foundation Physician Faculty Scholar Cynthia M. Boyd, MD, MPH
It is widely recognized that family members and trusted friends make an enormous difference by assisting disabled older adults with daily household and personal activities. There is less awareness, however, that families and trusted friends also often help older adults navigate our complex and fragmented health care system to get the best care possible—by scheduling and arranging transportation to appointments, engaging in medical decision-making, or overseeing adherence to health care treatments. As we learn more about how older adults navigate the health system, it is becoming clear that they often do so with the support and active engagement of a “family companion” —and that this role is enduring.
In a study we published in the January issue of the Journal of the American Geriatrics Society (JAGS), we found that nearly one-third of adults over age 65 were accompanied by what we called a “family companion” during routine physician visits. These companions were almost always family members (93.3 percent), and they typically accompanied their loved one to physician visits on a regular basis—70.3 percent were identified as “always” present.
We were surprised by the persistence and consistency of family companion involvement. Three quarters (74.5 percent) of older adults continued to be accompanied by a companion at one year follow-up, nearly always the same family companion (87.1 percent).
A new study in the Archives of Internal Medicine finds that some of the key characteristics of medical homes promote stronger morale and job satisfaction among providers and staff at community health centers.
In a survey of more than 600 employees at 65 clinics participating in the Safety Net Medical Home Initiative, more than half (53.7 percent) reported being satisfied with their jobs. About one third (32.8 percent) rated their morale as good. In particular, clinics with high scores on three key characteristics – access to care, communication with patients and quality improvement – enjoyed higher morale and job satisfaction among providers, and higher morale among other staff.
While employees at clinics with the characteristics of a patient-centered medical home reflected positively on their jobs, the study also finds that they are at higher risk for burnout. Only half of the respondents (49.5 percent) at such facilities agreed with the statement, “Occasionally I am under stress at work, but I don’t feel burned out.”
Read more about the study.
As we head into 2012, the Human Capital Blog asked Robert Wood Johnson Foundation (RWJF) staff, program directors, scholars and grantees to share their New Year’s resolutions for our health care system, and what they think should be the priorities for action in the New Year. This post is by Diana J. Mason, PhD, RN, FAAN, Rudin Professor of Nursing and Co-Director, Center for Health, Media & Policy, Hunter College, City University of New York; Strategic Adviser, Future of Nursing: Campaign for Action; co-editor, “The Nursing Profession: Development, Challenges, Opportunities,” RWJF Health Policy Book Series.
While I was editor-in-chief of the American Journal of Nursing, I and some of the editorial staff noticed that most of the manuscripts we received for our narrative column, Reflections, were about death and dying. We begged people to submit columns on other topics, lest Reflections become As I Lay Dying. But I shouldn't have been surprised.
As a nurse and daughter of a man who died at 58 from metastatic cancer, I have cared for many dying people and have been privileged to be with some at the moment of their deaths. I've had patients who told me that they were going to die that night—and they did. I've seen an 85-year-old woman kept alive on a respirator with an open abdominal wound for four weeks before she became septic and died, despite her stated wishes to not have such extraordinary measures. Caring for my father during the last month of his life was the most precious gift I was able to give to him—and to myself. Yet, I had to fight with the health care system to ensure that he was adequately medicated when hospitalized or to be able to remain with him during an emergency room procedure. I fought to take him home so he could die there, as he wished, with love and comfort care.
These experiences imprint themselves indelibly on our memories and our souls. They can be rich and profoundly move us to confronting the realities of our own life and inevitable death. Or they can make us witnesses to torture and inhumane treatment of the dying, and shake our core beliefs about how a rational, caring society behaves.
The U.S. Department of Health and Human Services (HHS) last week announced the launch of the Comprehensive Primary Care Initiative, to improve the quality of care for Medicare and other patients. The voluntary program, which will begin as a demonstrative model in five to seven markets, encourages primary care doctors and nurses to work with specialists and other health care providers to better coordinate patients’ care.
Primary care providers will receive support and resources to help develop personalized care plans for patients with complex health care needs, offer 24-hour access to care and health information, deliver preventive care, and engage patients and their families in their own care. Practices that do that so will receive an additional monthly fee from Medicare in markets where private insurers agree to do the same. The increased focus on prevention and care coordination is expected to results in savings that will later be shared with primary care practices that participate.
“This collaborative approach has the potential to strengthen the primary care system for all Americans and reduce health care costs by using resources more wisely and preventing disease before it happens,” HHS said in a release.
"The American College of Physicians (ACP) believes that the Comprehensive Primary Care Initiative offers enormous potential to promote the kind of personalized and coordinated care that patients seek and that physicians want to deliver," said Steven Weinberger, MD, FACP, executive vice president and CEO of ACP. "It will provide primary care physicians with the support needed to work hand-in-hand with patients toward a shared goal of ensuring high quality care while making the most efficient use of health care resources… Internal medicine physicians know from their personal experiences that when care is coordinated and centered on patients’ needs and expectations, through a primary care practice that uses proven 'best practices' and is accountable for the results, outcomes are better and costs are lower."