The U.S. has some of the best medical institutions in the world, yet uneven quality and care that does not follow evidence-based practices are all too common. A growing national focus on improvement has produced a vast body of quality measures, but few assess aspects of quality that patients and families find meaningful.
Since 2015 United Hospital Fund's Quality Institute has been working with health care providers, Greater New York Hospital Association, the New York State Department of Health, and others across the state and the metropolitan area to develop programs aimed at making health care safer, more effective, and more responsive to patients. Initiatives focus on three strategic areas—profiling performance, building quality improvement capacity, and engaging patients. Some of the Institute's most innovative work addresses that last challenge.
Extending the horizons of typical quality improvement efforts to include patients can be challenging, says Anne-Marie Audet, MD, the Institute's senior medical officer. “Some of our initiatives require changes to routine ways of delivering care, as well as staff training in new competencies such as team-based models or goal-driven interactions with patients and families.”
Patient-Reported Outcomes in Primary Care-New York (PROPC-NY), supported by the Engelberg Foundation, is one such project. While clinical observations and test results are essential to judging whether interventions are improving patients' health and responding to the reasons they consulted a provider, patients' own assessments are as essential, to inform and guide provider teams. Research suggests that patients' perceptions of their conditions and their care can differ markedly from that of their physicians, and that eliciting a patient's goals—such as increased mobility—and evaluating whether they're being met can lead to more effective treatment and goal attainment.
Some specialty practices have already started integrating the use of “patient-reported outcomes,” essentially self-reporting in response to a structured set of questions. But this approach is much less used in primary care, where patient conditions and goals are more wide-ranging and complex. Given this gap, the PROPC-NY project brought together three health care partners—The Institute for Family Health, Montefiore Health System, and Northwell Health—to develop and test tools and methods for eliciting and measuring patient-reported outcomes in primary care.
The 18-month project, concluding this spring, found that patient-reported outcomes are particularly useful in safety-net primary care practices, giving struggling patients the opportunity to open up about their lives in a way that rarely happened in their health care encounters. “By asking patients to report on their quality of life, depression and anxiety, and social health stressors through the use of standard questionnaires prior to the visit, physicians found they could jump-start deeper, more probing conversations about issues that have a real impact on their health,” Dr. Audet says. The questionnaires also create a common language for doctor-patient discussions, and for coordination among multi-disciplinary team members who support the patient, she notes.
ADDRESSING RESOURCE NEEDS
At Montefiore, pregnant patients were asked about health-related stress caused by factors such as inadequate food or housing and partner abuse. This information, shared with the entire care team, was used to provide appropriate community resources to help reduce the impact of those stressors, to positively influence the pregnancy and delivery and, later, the infant's development. In follow-up surveys, 76 percent of patients said the process helped them find needed resources, 88 percent said the questions made it easier for them to raise concerns, and 92 percent said they felt better prepared to manage stress.
Systematically using patient-reported outcome measures takes significant work, partners in the initiative reported when they gathered at UHF for a final joint session. Among the lessons learned:
Questionnaires must be designed to elicit full and meaningful responses to be crucial, and follow up with patients is crucial.
Clinicians must be convinced of the value of the questionnaires and the process, not always an easy sell given time pressures. At Northwell, where patients were questioned about depression prior to their primary care visit, behavioral health appointments increased as a result, but physicians were still concerned about the time involved. “It was very hard to get this into the workflow of my practice,” one said.
Teams need to create coordinated workflows across disciplines.
Documentation of patient goals and needs over time is crucial, but many electronic health records systems cannot accommodate patient-reported outcomes; most lack the capacity to document social health stressors or patient goals and progress over time.
But participants unanimously confirmed that these efforts pay off, helping them uncover important issues for their patients. “Although much work remains to spread and sustain the use of patient-reported outcomes,” says Dr. Audet, “the project's approach shows promise for fostering more patient-inclusive practice that improves overall care, and we are assembling resources for providers ready to embark on this journey.”
HELP FOR “DIFFICULT DECISIONS”
Eliciting patient preferences also plays a part in another Quality Institute project, “Difficult Decisions about Post-Acute Care,” supported by a grant from the New York State Health Foundation. One in five patients require post-acute care after hospitalization, and choosing a care setting and provider can be extremely stressful for both patients and family caregivers. The choice has serious implications for health outcomes as well: the care that patients receive after discharge may place them at greater risk of prolonged stays in skilled nursing facilities, decline in functioning, hospital readmissions, and inability to return home.
Yet despite hospital staff 's best efforts to create safe, effective discharge plans, efficiency and cost concerns commonly require rapid decision-making. Since federal regulations prohibit staff from making recommendations about post-acute care providers, the onus falls on patients and families to make site visits, reach out to family and friends for recommendations, and search online.
“Difficult Decisions” is examining the factors providers and hospital staff consider during discharge planning, patient and family caregiver preferences, policies that foster or limit decision making, how insurance coverage and other factors restrict choice, and innovative models and strategies that can better support informed decision making. “With valuable input from hospital staff, researchers, policymakers, innovators, and other stakeholders we intend to identify best practices, innovative tools, and potential policy levers that hold promise for supporting decision-making,” says Lynn Rogut, director of quality measurement and care transformation at UHF. “In this case our specific goal is helping New Yorkers make better-informed choices for post-acute care but, as with all our projects, the larger aim is continuous improvement of our health care system overall.”