By Cara Evans, Department of Health Research Methods, Evidence, and Impact, McMaster University

Value and values in outcome measurement

I am a Canadian PhD student in health policy, and in 2021 I received a Fulbright scholarship to conduct research in partnership with the Camden Coalition’s National Center for Complex Health and Social Needs. When this partnership began, the field of complex care was in the midst of broadening the conversation on value in complex care. 

While early evaluations of complex care programs tended to focus on cost savings and utilization, more recent work considers what matters to service users, organizations, and community members, and how this can be captured in measurement. After all, outcome measurements are a reflection not just of value in terms of costs and “return on investment,” but also values in terms of beliefs about what is important. While cost control is relevant, it is only one piece of what those working in complex care hope to achieve.

Moreover, while values matter in all domains of healthcare, we were especially interested in values relating to behavioral healthcare — care related to mental health and substance use disorders. Although behavioral health concerns are common among people with complex health and social needs, few published studies report on behavioral health outcomes in complex care. This led us to wonder what outcomes would be most relevant. What does success look like in supporting the behavioral health of people with complex health and social needs? What behavioral health goals do individuals, services, and systems seek to achieve?

Our study

To answer these questions, we conducted a study to learn about the behavioral health outcomes that are valued by complex care stakeholders. We interviewed 25 individuals, including seven people with lived experience of complex health and social needs who hold advisory or advocacy roles, and eighteen people in operational and programmatic leadership positions. All participants had deep knowledge of and engagement with the field of complex care.

In these conversations we learned about the specific goals or outcomes that are important to people with deep involvement in the field of complex care, at individual and service/system levels. We also learned about challenges of aligning measurement with values.

Challenges and ways forward

Challenge: Different viewpoints, different values. As may be expected, values are not unanimous. Participants’ perspectives on meaningful outcomes were informed by their paradigm or worldview as it relates to behavioral health. For example, for those working from a harm reduction stance, patient goals were key and as such, positive outcomes could include using substances in safer ways. Meanwhile, those in favor of abstinence-based approaches (which, in our group, was a belief predominantly held by those with lived experience) believed that stopping substance use altogether was a necessary first step towards finding social connection, meaning, and purpose. 

Where to from here: Efforts at field-building will need to grapple with this diversity of viewpoints. In some instances, it may be possible to identify outcomes and goals that cut across worldviews. In other circumstances, a balance may be needed between building consensus and enabling variation.

Challenge: Elevating service user perspectives. Current measurement practices may not reflect service user priorities. For instance, participants with lived experience often highlighted the importance of understanding one’s unique journey as an important goal in behavioral health treatment. Few participants in operational and programmatic leadership positions raised this goal in initial interviews; however, when we shared preliminary results, none raised concerns about its inclusion.

Where to from here: As the field works towards patient-centered approaches to quality measurement — including measures produced with the input of patients and measures oriented around specific patient goals — user perspectives may be more firmly embedded in measurement approaches.

Challenge: Measurement needs and measurement burden. Measurement is often conducted in order to meet external requirements (e.g., from funders). These requirements do not always reflect the values of providers and participants — making it difficult to demonstrate what participants saw as real successes of complex care. At the same time, programs and providers are often managing a high volume of funder-required measurements, so the answer cannot simply be to measure more domains. 

Where to from here: Programs and services can target measurement to domains that are both valued and impactable. This may require taking stock of the specific goals of an individual program or service and how those goals fit into the broader continuum of complex care. For instance, a short-term navigation program may identify that it primarily adds value at the point of initial contact and stabilization, while community partners may provide treatment and recovery supports once that initial work is underway. As such, the navigation program may focus on outcomes such as relationship-building and stabilization that fall directly within its own purview. Ecosystems of care can also work together to measure outcomes achieved through collaboration, and to avoid duplication.

Reflections 

Measurement isn’t just a question of numbers – it’s also a question of values. Capturing the critical importance of complex care in supporting service users’ behavioral health will require balancing viewpoints, centering service users, and working wisely within constraints. The purpose of measurement is to support improvement in care, and ultimately improvement in health for service users. Values can act as a compass to steer us in the direction of meaningful change.

This research was funded by a Fulbright Canada Special Foundation Fellow Award and an Ontario Graduate Scholarship to the student investigator.