Measuring Recovery as an Outcome
This post was originally published on September 27, 2015.
This post focuses on an article critically examining the use of recovery as an outcome measure by professionals. They distinguish between recovery as a process (an individual journey rather than a specific outcome – a deeply personal experience related to one’s life goals, needs, and striving) and recovery as an outcome (a cure – a complete absence of symptoms of illness and/or a return to premorbid functioning – rather than as developing a satisfying life in spite of symptoms or vulnerability).
Pat Deegan (with Robert Drake) published a recent article on measuring recovery as an outcome. Their focus is on mental illness, but it offers some interesting food for thought about parallels with addiction recovery outcome research. As access to care grows, an important question is whether actually facilitates recovery.
Perhaps we can measure some of the processes corresponding to the recovery concept: More people with serious mental disorders have the freedom to live outside of institutions, avoid medications and coercive mental health systems, and pursue employment, friendships, and love relationships in their communities. These are measurable variables. Yet recovery processes are clearly compromised by the ubiquitous problems of poverty, lack of safe low income housing, dangerous neighborhoods, victimization, constant threats of coercion (sometimes by the criminal justice system as well as the mental health system), stigma, the lack of educational and employment opportunities, and the dearth of evidence-based interventions that could enhance functioning.
The evidence that recovery outcomes are improving is minimal. One of the most widely assessed recovery outcomes is competitive employment – a primary goal for the majority of people with serious mental disorders. The evidence shows that employment remains very low (under 20%) (60–61) and has actually decreased during the recent recession (60,62) because people with disabilities suffer greater job loss during recessions (63).
Raising awareness of the recovery concept has not actually improved positive outcomes; current measures of recovery fail to capture the process concepts and individual goals that inspire service users; and generic recovery measures cannot assess personal goals, diversity of populations and programs, and cultural context. What should be done?
Disappointing. Especially since every provider identifies their services as recovery-oriented. They offer an interesting response. They step back to reassess. On the one hand, the push for recovery-oriented services may result in simple re-labeling of approaches. And, quantitative quality of life measures can incentivize interventions that don’t feel like recovery to the client. On the other hand, the pushing of recovery measures, while imperfect, may at least help broaden the focus of providers.
Perhaps we should accept that recovery is a personal journey – a concept developed and owned by people who have lived experience – and avoid co-opting the term to advance professional, program, research, and system goals. If recovery is indeed a process, perhaps the mental health system should focus on measuring positive and negative outcomes (both are important) without asserting that some are recovery outcomes. But processes are also critical. Focusing on outcomes exclusively may devalue the ideals and the process issues that are important to users of the mental health system and may lead to manipulations to show good outcomes despite poor processes. For example, placing people in work enclaves for jobs that do not match their interests achieves high employment rates but violates the process goals of choice, self-determination, and quality of life.
Perhaps we should accept the problems and complexities of measuring recovery and continue to operationalize processes and outcomes that are consistent with recovery. Recovery is an inspiring ideal, and programs need to assess the outcomes that align with recovery as well as with their goals. Labeling some outcomes as recovery may at least help program managers to select outcomes that are important to participants. For example, people with mental health symptoms clearly advocate for safe housing, jobs, and quality of life – all measurable outcomes – rather than medication compliance.
Perhaps genuine attention to recovery outcomes could help professionals to understand processes and goals that their clients value and also recognize that clients need to be centrally involved in developing and assessing programs. Inclusion would be consistent with the principles of community engagement research (64) and might lead to innovative approaches to developing services and assessing their success. For example, programs that empower people to make decisions about life-goals and treatments may facilitate self-management. One method of doing this would be to distribute electronic self-management systems and self-referral systems directly to people with disorders. Users of mental health services could then select the services they want (65–66).
Perhaps involving clients in measuring processes and outcomes might deter professionals from relabeling traditional clinical approaches, such as case management, skills training, and medications, as recovery-oriented. Instead, programs might develop and implement services that people truly want: services that emphasize financial, residential, and personal independence; normal adult roles such as education, employment, home ownership, and intimate relationships; and personal choices regarding treatments and illness management.
I’ve written frequently about the need for an increased emphasis on quality of life measures rather than building an evidence-base grounded in measures of reduced drug use, reduced crime, reduced disease transmission and reduced OD.
It’s interesting that they see themselves as grassroots advocates seeking to overcome deeply entrenched professional interests that emphasize medication as the primary tool and medication compliance as a primary outcome measure.
Simultaneously, in addiction treatment, we’re seeing professional and institutional advocacy to increase use of medication. These advocates see themselves as seeking to overcome deeply entrenched grassroots and grassroots-rooted professional interests that are skeptical and resistant toward medications. (Believing that the effectiveness of treatment medications are overestimated, that they may undermine goals of recovery, that their PHARMA’s bad behavior makes them untrustworthy, and that medications have a tendency to become treatment rather than treatment tools.)
This article does a great job laying out the mental health experience and some important questions that we need to attend to as our field changes in ways that will be for the better and ways that will be for the worse.