Delivering—and Measuring—Healthcare That Matters for People with Complex Healthcare Needs

People with complex healthcare needs—whether because of multiple chronic conditions, serious illness or social needs—receive healthcare that is often extensive and costly. Their care can be fragmented, burdensome or even harmful, and it rarely matches what matters to them. These individuals, who arguably need the highest value care, are usually excluded from evidence-based quality measures because they have been excluded from the randomized controlled trials that define the evidence.

A new measurement paradigm should drive care that matters to people. Quality measurement now focuses on what is easy to measure (such as the absence of adverse events—hospitalizations, readmissions, pressure ulcers, falls) or on narrow interventions (such as medication review after a hospitalization). Although no one wants pressure sores, falls or readmissions, the focus on measuring whether bad things happen or not is insufficient to address whether care aligns with the goals set by the individual or improves their quality of life.

"In my whole 50 years of seeing doctors, it was the best thing that I’ve ever been through. Having them come here and see everything and spend time, answer your questions, set the goals, analyze what’s needed, what should happen, what could happen, what probably will happen, and then just be here. I mean, it was the best experience I ever had.”

—Caregiver as proxy respondent for patient

Person-driven outcome measures assess whether healthcare organizations are helping individuals achieve “what matters most”—as they define it—for their own health. The National Committee for Quality Assurance (NCQA) developed a way for people with complex needs to work with their care teams to identify what matters most to them and use that to document a “person-driven outcome” that addresses their specific needs. This approach guides the care team to develop plans that help individuals achieve the goals that matter to them, enabling healthcare organizations to define and monitor whether individuals are achieving their identified outcomes.

Individuals and clinicians felt the approach helped strengthen the patient-clinician relationship.

To date, 13 care delivery sites have demonstrated the person-driven outcomes approach, using these new measures, with 1,309 individuals and caregivers and more than 100 clinicians. For many individuals and families, it was the first time they were asked what mattered to them in their own healthcare. It allowed them to feel a sense of control over the care they were receiving and to have some accountability for their health outcomes.

Clinicians felt the approach helped them understand their patients’ preferences and better align the care they provided with those preferences and needs. Some clinicians said they preferred these measures over existing “checkbox measures.”

"Something very inspiring about this work and something also very surprising is that it makes us ask patients, 'What’s something that’s really important that we can do that’s positive and proactive; something that’s important to you?' And that’s when there’s a win for the patient and a win for the medical provider."

—Clinician from a home-based Medical Group

The individuals and clinicians both felt the approach helped strengthen the patient-clinician relationship and made them feel that they were both working toward the same goals. From a technical standpoint, the measures worked well. Sites were able to implement the quality improvement intervention and person-driven outcome measures successfully among their patient population to varying degrees, similar to the performance of typical measures. No significant differences in demographic characteristics were seen between those who did and did not achieve their goals. There is also evidence that the person-driven outcomes approach may reduce hospitalization.

Person-driven outcome measures will drive new ways of providing care. Given the success of our implementation study, we believe these measures are poised for widespread dissemination. Quality measures are currently assessed on feasibility, i.e, whether an organization report the measure with minimal burden or change in workflow. We need to focus less on what is feasible now and focus more on whether a measure’s value is worth the investment to make it feasible in the future.

Appropriate quality of care measures are urgently needed to improve and incentivize care for the growing number of people with complex health status. Person-driven outcome measures offer a new strategy for quality that embraces person-centeredness and can drive investment in new care approaches that work better—for everyone.

Sarah Hudson Scholle, DrPH, MPH, is the Vice President of Research and Analysis at NCQA. Caroline Blaum, MD, MS, is a Senior Research Scientist at NCQA. Erin Giovannetti, PhD, is the Scientific Director of the MedStar Health Evaluation and Analytics in Clinical Care Transformation. Kali Peterson, MS, MPH, is a program officer at The SCAN Foundation in Long Beach, Calif.