In 2020, we met with our Community Advisory Committee (CAC) to discuss the results of our randomized controlled trial that showed no statistical difference in hospital readmission rates between the control and intervention groups — but a statistically significant increase in the number of participants in the intervention group receiving food assistance (SNAP benefits). In that meeting, we asked for their guidance in determining where we should focus our efforts.

Their feedback included statements like:

• “Building people up who have mental health issues, health issues, spiritual issues is a process”
• “You measure how much people are involved with their community or their family”
• “They said it is not making a difference, but it is making a difference to us”

The “difference” our CAC members talked about sounded to us like a difference in quality of life.

Through our work with people in Camden, we see firsthand what happens when people are unable to have certain basic needs met — like housing, food, transportation, employment, mental health treatment — and how this affects overall health and well-being, particularly for the population we serve who are living with both medical and social complexity. The feedback we received from our CAC members encouraged us to think through how we can measure the success of our model against the outcomes our participants value.

Historically, individuals with complex health and social needs have been identified for complex care program eligibility by having frequent, unnecessary emergency room visits or hospitalizations. In this way, the efficacy of complex care programs also came to be measured quite simply: by cost savings in the form of reducing healthcare utilization. That goal is important, but alone is too limited.

We at the Camden Coalition, along with our fellow complex care providers across the country, have long known that the true value of person-centered care lies in supporting our participants to meet their own goals. Thankfully, the field of complex care is recalibrating its compass toward patient-centered outcomes.

Measuring goal attainment

For the past few years, our data team has been exploring how to measure our participants’ quality of life.

First, we asked whether there are existing, validated measures that we could use. In 2021, we released a brief outlining lessons from our efforts to collect quality of life data by implementing the Healthy Days measures. One of the key takeaways: not all validated measures work well for every patient population, especially in complex care. It takes time and effort to determine the best quality of life measure to implement for your program participants.

We are currently piloting the Person-Centered Outcome Measures through a learning collaborative convened by the National Committee for Quality Assurance (NCQA).  One of the biggest challenges we have faced is that each of our participants has different goals, and a different vision of what quality of life means for them, which makes it difficult to document and measure outcomes in a standardized way. The person-centered outcome measures address this through an individualized process called “goal attainment scaling.”

The goal attainment scaling method allows us to quantify participants’ progress toward the goals they identify by defining ahead of time what it would look like to be in a worse position, stay in the current position, meet a realistic goal-related outcome, or meet a stretch goal-related outcome — and then tracking their progress.

While our care teams already use our COACH framework to support program participants in identifying and outlining the steps needed to accomplish their goals, the use of goal attainment scaling as part of implementing the person-centered outcome approach introduced a more structured way to measure their progress in attaining those goals. It has also pushed us to become more systematic in collecting and analyzing participants’ goals.

One unexpected benefit we’ve found is that combining our COACH framework with NCQA’s person-centered outcome measures has resulted in not only better data collection, but also better care, by deepening our care teams’ understanding of participants’ needs and motivations. Since starting the NCQA learning collaborative, our Senior Clinical Manager Jeneen Skinner says, “the team has been asking participants more follow-up questions earlier on in the workflow. This helps us more clearly understand how to best guide them through the process of accomplishing their goals.”

For instance, many of our participants’ goals are related to housing — not a traditional measure of health outcomes, but nonetheless critical for an individual’s quality of life. Unfortunately, permanent, stable housing is also a challenging goal that often takes a long time and many steps to achieve. Using the goal attainment scaling method to measure person-centered outcomes gets the care team and participant on the same page about what a realistic plan to secure housing is from the start, and breaks what can be an overwhelming task into meaningful and achievable milestones to measure progress against.

Here’s an example of a housing goal and how it can be scaled:

• Goal: Get stable housing in the next six months so I can spend more time with my grandchildren
• Scale:
  • -2 (worse than current)- living in rehab permanently
  • -1 (current)- living in rehab with limited visitation opportunities
  • 0 (realistic)- being connected to section 8 housing resources in the next month
  • 1 (stretch)- submitting section 8 housing application within 6 months
  • 2 (super stretch)- being approved for section 8 housing within 6 months

Additionally, our care teams have found that the word “goal” doesn’t always resonate with participants. They have found the following prompts to be more helpful when working with our participants to identify their goals:

• “What matters most to you?”
• “What brings you joy?”
• “What does it mean to have housing?” or “What are you unable to do without housing?”

Where we go from here

Developing a more diverse set of quality measures to evaluate complex care programs was one of the 11 recommendations in the landmark Blueprint for Complex Care, co-authored with the Institute for Healthcare Improvement and the Center for Health Care Strategies.  There has been a lot of exciting progress on this front since the Blueprint was published in 2018.

• In 2020, we worked with the Institute for Healthcare Improvement to publish an assessment of and set of recommendations for quality measurement in complex care.
• In 2022, our partners at the Center for Health Care Strategies released a patient-centered complex care research agenda.
• Also in 2022, we worked with a Fulbright Fellow to publish research on which behavioral health outcomes specifically are valued by program leaders and people with lived experience.

A person’s quality of life matters immeasurably, and it looks different for each of us. For one of our Housing First participants, for example, it looks like combining Suboxone treatment with a passion for gardening to finally achieve stable recovery from an opioid use disorder. For another participant struggling with addiction, it looks like figuring out how to access his benefit money independently (rather than with our team’s help) so that he feels the sense of control he needs to begin reducing his alcohol intake. For yet another participant, it looks like securing a quiet room away from her family members who are in active addiction.

The foremost authorities on what an improved quality of life looks like are those living that reality.

Tracking progress on goals that matter to people using person-centered outcome measures is just one approach to measuring that improvement, and we will continue to identify and test others. We encourage other complex care programs to do the same.

NCQA’s Person-Centered Outcome Measures learning collaborative is supported by The SCAN Foundation and The John A. Hartford Foundation.

The SCAN Foundation is an independent public charity dedicated to creating a society where older adults can access health and supportive services of their choosing to meet their needs. Our mission is to advance a coordinated and easily navigated system of high-quality services for older adults that preserve dignity and independence. Learn more at https://www.thescanfoundation.org and @TheSCANFndtn.

The John A. Hartford Foundation, based in New York City, is a private, nonpartisan philanthropy dedicated to improving the care of older adults. Established in 1929, the Foundation has three priority areas: creating age-friendly health systems, supporting family caregiving, and improving serious illness and end-of-life care. For more information, visit www.johnahartford.org and follow @johnahartford.