Incorporating What Matters Most to Patients into Care Delivery

By Caroline Blaum, Daniela Lawton, and Angelia Bowman, National Committee for Quality Assurance  


Existing national quality measures tend to be clinically oriented and leave gaps in addressing what is important to people who need home- and community-based services. Many measures were never tested with or designed for people with complex health needs, so this population is left out of the conversation. The growth in the number of people who need long-term services and supports (LTSS) — many of whom receive such services through Medicaid LTSS programs  — has clarified for state and federal policymakers, clinicians, patients, and families that there are gaps in quality for addressing care outcomes in home- and community-based services. Although outcomes such as readmissions can be assessed, outcomes related to care delivery that matter most to patients — that are based on the preferences of people with complex health needs — are a key ingredient in promoting goal-directed care planning and accountability in home- and community-based services.

On the medical side of the care continuum, people with complex health status — who are most often older adults with multiple chronic conditions, serious illness, or frailty — frequently receive care that is fragmented, costly, potentially dangerous, and (most important) that may not reflect what matters to them. People with complex needs, especially those with physical health, behavioral health, and/or social challenges, are seldom engaged in conversations with their clinicians about what they want from their health care. Evidence suggests that an approach to care that captures what matters to an individual can lead to a decrease in unwanted care. Having those conversations has also been shown to lead to better care and health outcomes in several studies.

Moving Toward Measuring What Matters

Systemic changes are needed to support delivering care that matters in all care settings.

Currently, care paradigms such as Age-Friendly Health Systems and Patient Priorities Care are working to promote care that aligns with what matters to people throughout the entire care continuum — from specialty and primary care, to nursing home care, to care delivered in the home and in the community. Systemic changes are needed to support delivering care that matters in all care settings. Specifically, appropriate quality measures that drive care that matters to the individual and that can promote accountability for such care will facilitate widespread adoption of goal-aligned care for people with complex needs.

Developing Person-Driven Outcome Measures

To meet the dual aims of pushing toward goal-oriented care and facilitating valid and reliable assessment of whether care aligns with patient goals, the National Committee for Quality Assurance (NCQA) collaborated with individuals and families, research experts, and care organizations to develop “person-driven outcome” measures that focus on outcomes that matter most to the patient. These measures are designed to drive care based on personalized, measurable goals identified by an individual or caregiver that can be used for care planning, quality measurement, and accountability. Measurement of person-driven outcomes can provide real value for states, health plans, clinical delivery systems, clinicians, and patients. With funding from The John A. Hartford Foundation and The SCAN Foundation, NCQA is evolving this important work and advancing the voice of patients and their families in the service of better care.

NCQA developed the following quality outcome measures and tested them among 13 organizations, 103 clinicians, and more than 1,300 patients:

  • Assessment of a Person-Driven Outcome: Percent with complex care need with a documented person-driven outcome AND a documented plan for achieving it.
  • Follow-up on a Person-Driven Outcome: Percent with complex care need with a documented person-driven outcome AND documentation of at least one follow-up within 180 days.
  • Achievement of a Person-Driven Outcome: Percent with complex care need with a documented person-driven outcome who achieve it.
Some examples of person-driven outcomes ranged from getting outside to planting a garden to going to church.

The measures have been used among diverse populations, including people experiencing functional limitations, behavioral health issues, and serious illness, as well as individuals receiving both medical care and home- and community-based services. Some examples of person-driven outcomes that were documented during implementation ranged from getting outside to planting a garden to going to church. Person-driven outcome measures can help ensure that diverse older adults receive care that matters to them regardless of the setting that care is delivered. Care that is based on what matters to people is one of the key ways to address health equity and health care disparities.

Person-driven outcome measures also provide a pathway for individuals to direct their care through goals that are meaningful to both them and their clinicians.

"As a physician, I get locked into, 'I see, I diagnose, I treat.' I’m very good at knowing my why, but sometimes I forget my patients’ why, and I think [person-driven outcome measures have] given me … another tool in my toolbelt to communicate, advocate, and support my patients in achieving their goals. It also lends to creating a new baseline for conversations as to their current state."

Clinician in home-based medical group

The person-driven outcome approach also helps improve the patient-clinician relationship. When clinicians understand their patients’ preferences and needs, they can align care accordingly. Many patients feel that their clinicians are more invested in their care and many clinicians feel that this approach helps them to understand their patients’ preferences and better align the care they provide with those preferences and needs. These measures particularly appeal to clinicians who are frustrated at being evaluated on clinical interventions that are not relevant to people with complex health status. Person-driven outcome measures allow clinicians to do what they “signed up” to do — improve and provide person-centered care.

Measures that matter can increase delivery of care that matters.

Person-driven outcome measures are a flexible, feasible, and standardized way to assess care that matters to people with complex health status in the clinical, home, and community-based care settings. The measures, and the care they encourage, are accepted by patients, families, caregivers and clinicians, and promise to be an important tool to improve care for people with complex health care needs. Measures that matter can increase delivery of care that matters.