2

Policy Context and Key Concepts

Two presentations at the workshop focused on the policy context and key concepts associated with recovery. Keith Humphreys (Stanford University) discussed issues related to recovery from substance use and Kenneth Wells (University of California, Los Angeles) discussed issues related to recovery from mental disorders.

POLICY CONTEXT OF MEASURING RECOVERY FROM SUBSTANCE USE

Keith Humphreys began by noting that recovery is embraced as a policy goal in the United States. Similarly, Scotland, England, and Wales consider recovery a guiding goal of drug policy, and other countries, such as Australia, have discussed incorporating this concept into their policies. He noted that in the U.S. health care system, due in part to the Affordable Care Act and some recent changes in Medicaid, there is a desire to fund recovery support services even if these have not yet been fully defined. He added that the Surgeon General’s report on substance use disorders, currently under development, also includes a chapter on recovery. From a grassroots perspective, there has been an increase in people identifying with being part of a recovery movement.

Humphreys said that the need to measure recovery is partly scientific, but it is also related to the desire of a group of people to be counted. The grassroots-based political push for measuring recovery raises the question of how to design studies that are credible, valid, and use measures that are meaningful to those who have gone through the experience. In his sum-

mary of the basic dilemma, he described recovery as a concept that comes from outside of medicine. Medicine has expertise in measuring disease, the absence of disease symptoms, and impairments. Medicine also has some expertise in measuring rehabilitation, generally defined as a person restored to a previous state of health. However, recovery is different from all of these concepts. Recovery is not just the absence of illness and it is not exactly rehabilitation (which means “to be made healthy again”) because some people say that they were never healthy before recovery, and others say they consider themselves healthier afterward. Humphreys said that coming up with a good definition of recovery is a scientific problem in some respects, but in other respects it is a credibility problem.

Humphreys argued that there are some previous studies that scientists can rely on to inform the validity of the data collection approaches they are considering. High-quality ethnographic and qualitative studies have been conducted by Ramona Asher, Carole Cain, Alain Cerclé, Norman Denzin, and David Rudy, and these contain rich information on lived experiences of recovery. A small number of quantitative surveys have asked recovering people how they define recovery, and these are discussed in detail by Christine Grella and Alexandre Laudet (see Chapter 4). In addition, expert groups of researchers, clinicians, and recovering people have written consensus guidelines defining recovery.

Humphreys said that the concept of recovery is used in at least three different ways:

• process that individuals with an addiction experience,
• desirable outcome for addicted individuals, and
• cultural and political movement or set of values.

For the purposes of the current SAMHSA initiative to measure recovery, Humphreys argued that the second interpretation is most relevant. In other words, the interest is in a desired outcome and recovery rates in the population.

Humphreys next discussed several definitions of recovery. The Betty Ford Institute Consensus Conference, which included the often overlapping groups of people in recovery, advocates, clinicians, and academics, developed this definition: “Recovery from substance dependence is a voluntarily maintained lifestyle characterized by sobriety, personal health, and citizenship.”¹ Humphreys pointed out that “voluntarily maintained” means that the definition does not include people who were incarcerated and could not use substances. Sobriety means that the definition assumes

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¹Betty Ford Institute Consensus Panel. (2007). What is recovery? A working definition from the Betty Ford Institute. Journal of Substance Abuse Treatment. 33, 221-228.

no substance use at all. Finally, personal health and citizenship imply that recovery is viewed as not just the absence of symptoms but also as some kind of broad well-being and engagement with community roles and responsibilities.

Another definition comes from the UK Drug Policy Commission, which described recovery as a process, characterized by voluntarily maintained control over substance use, leading toward health and well-being.² This definition was in a sense a response to the Betty Ford definition, and it is very similar. However, the “voluntarily maintained control over substance use” in the UK definition allows for the possibility of moderate drinking while in recovery. The UK definition also emphasizes that individuals who are participating in methadone treatment can be considered in recovery, which Humphreys noted is a subject of debates in both the United States and in the United Kingdom.

The final definition noted by Humphreys was the Connecticut Community for Addiction Recovery definition: “You are in recovery if you say you are.”³ Humphreys said that this definition can be interpreted in two ways. One interpretation is that it reflects a grassroots political movement that aims to be inclusive, and from this perspective, efforts to narrow the definition may not be well received by those who perceive it to be exclusionary. Another interpretation of the definition is that it reflects the view that recovery is subjective and self-determined.

Humphreys said that there are three challenges associated with the definitions. One of them is that there is some disagreement about whether individuals who are moderate substance users can be in recovery. The second is that there is disagreement about whether people who abstain from substances with the aid of medication can be considered to be in recovery. And third, not everyone agrees that definitions of recovery can be standardized at all.

Humphreys pointed out that on these questions there is sometimes a departure in views between those with a lived experience and those without a lived experience. Government and academic researchers tend to want to be inclusive, and while this is a noble goal, it overstates the differences among those with lived experience in how they think about recovery. Humphreys argued that SAMHSA’s definition of recovery is an example of a definition that is broad to an extent that it loses its meaning

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²UK Drug Policy Commission Recovery Consensus Group. (2008). A Vision of Recovery Policy Report. Available: http://www.ukdpc.org.uk/wp-content/uploads/Policy%20report%20-%20A%20vision%20of%20recovery_%20UKDPC%20recovery%20consensus%20group. pdf [July 2016].

³See http://ccar.us/#about [July 2016].

for those who are in recovery because it includes a wide range of people and experiences that they do not associate with recovery.

Humphreys said that the widespread availability of the Internet has provided researchers with opportunities to collect data from large numbers of people in recovery and better understand their perspectives. One of these studies described by Humphreys is the What is Recovery? Study.⁴ He argued that the study’s findings illustrate substantial agreement among people who consider themselves in recovery in how they define recovery. Several elements of recovery were endorsed by 90 percent or more of the respondents in this study as elements that belong in the definition of recovery. The elements included no use of alcohol; no abuse of prescription medications; a realistic appraisal of one’s own abilities and limitations; being honest with oneself; living a life that contributes to society, to one’s family, or to one’s betterment; and being grateful. There was less agreement on some items, for example on whether abstaining from tobacco belongs in the definition of recovery, with 64 percent of the respondents endorsing this item. Humphreys urged caution to not lose track of the relative agreement among those with lived experience and to avoid definitions that are so broad that are meaningless or divorced from lived experience.

As Humphreys indicated, one of the challenges associated with measuring recovery is that there is no agreement about whether the recovery experience can be standardized or whether it is entirely subjective. He argued that the solution to this problem is to embrace it, in other words, to always include a simple question that asks whether the person considers themselves to be in recovery from addiction. He added that some of the surveys that measure recovery with questions such as “have you ever had a problem with drugs or alcohol and now no longer think that you do?” are criticized because many people who would be counted as in recovery on the basis of that question, do not think of themselves as in recovery, and conversely, many people who would not be counted as in recovery, consider themselves to be in recovery by their own definition. Consequently, it is important to assure that people who are classified as in recovery in a study would recognize themselves as such: if they do not, the study will have both a validity problem and a credibility problem.

Christine Grella (University of California, Los Angeles) commented that recovery has a very politicized, subjective meaning, which can be seen when subgroup responses to the questions in the What Is Recovery? Study are analyzed. For example, some people consider themselves as

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⁴Kaskutas, L.A., Borkman, T.J., Laudet, A., Ritter, L.A., Witbrodt, J., Subbaraman, M.S., Stunz, A., and Bond, J. (2014). Elements that define recovery: The experiential perspective. Journal of Studies on Alcohol and Drugs, 75, 999-1010.

having had a problem and no longer do, but they do not like the term recovery because of the association with traditional 12-step programs. She argued that because of issues of this type, more inclusiveness may be necessary. (See Chapter 4 for further details about the results from the What Is Recovery? Study.)

Humphreys noted that in some cases comparisons across groups are difficult because the size of some of the groups is fairly small. He agreed with Grella that it is important to develop an approach that captures everyone who is in recovery, but he argued that there is a risk associated with a definition that becomes so broad that people with lived experience are no longer able to discern what it is that is being talked about and do not recognize themselves in the experience.

Alexandre Laudet (Center for the Study of Addictions and Recovery, National Development and Research Institutes, director emeritus) said that in one of the studies that she was involved in they did hair sample analysis to ascertain abstinence from both drugs and alcohol and found that people who have not used any substances in a while would say that they are not in recovery. When asked about this, they said that they did not consider themselves in recovery because they did not “go to meetings,” which underscored Grella’s point about the strong perception of recovery as participation in a 12-step program. Laudet added that it is generally very difficult to recruit participants for research on recovery who are not in a 12-step program, even when terms other than recovery are used. She said that this was the case even in the What Is Recovery? Study, which was conducted over the Internet and aimed to include a broad range of respondents. Humphreys agreed that there is a strong association between the word “recovery” and 12-step programs, but he argued that it is still important to ask questions that allow one to measure recovery in a particular study.

Wilson Compton (National Institutes of Health) noted that this discussion seems to suggest that a study to measure recovery should include multiple approaches to asking the questions, one of which would be to simply ask about whether the person identifies herself or himself as being in recovery. The challenge for SAMHSA will be to decide how much time can be allocated to measuring recovery as part of any overall questionnaire. He added that the problem is similar to that associated with measuring sexual behavior and the distinction between the behavior and identity of being gay, lesbian, or bisexual. Given that there might be meaningful differences between groups of people who respond differently, the ability to distinguish between behavior and identity may be an important minimum requirement for a study.

Kim Mueser (Boston University) agreed with Humphrey’s point that there is a fair amount of agreement about how recovery from substance

use is defined. It seems that there is agreement that not using substances is at the center of the definition, even if some people may be using a small amount of one substance or another. There is also agreement that the lack of use is associated with improvement in functioning. Mueser noted that this definition appears to be in line with the traditional medical definition of recovery, that is, the determination that a person does not have a substance use disorder. He argued that if it is clear what is meant by recovery from a substance use disorder, it is not obvious that measuring a subjective identity is necessary.

Humphreys replied that there are political reasons behind this that are important. People want to be counted and acknowledged, and they do not necessarily recognize themselves in studies that omit the subjective identity question. He agreed with Compton that this issue is similar to wanting to count how many people have sexual partners of different types but also needing to measure how many people describe themselves as gay or lesbian. He further argued that this consideration is particularly important for a taxpayer-funded initiative, because people often feel disregarded by the government, disregarded in the accounts of addiction, and disregarded in official statistics. They often argue that there is a need to understand addiction and recovery in a way that goes beyond the medical view and the symptoms, that also factors in other aspects of the process that are important to them, such as repairing families, making amends, becoming an active member of their communities, and volunteering.

Benjamin Druss (Emory University) noted that some of the specific aspects of the definitions described are specific to recovery from substance use disorders, and he wondered whether enough commonalities exist with recovery from mental health disorders to allow for a streamlining of the data collection design. Humphreys said that the spirit of recovery is similar for substance use and mental health, because both comprise a sense of optimism, a desire for health, and a strength-based perspective. However, the specifics are not the same and that represents a measurement challenge.

POLICY CONTEXT OF MEASURING RECOVERY FROM MENTAL DISORDERS

Kenneth Wells (University of California, Los Angeles) discussed the policy issues surrounding recovery from mental disorders, which he argued is important, because it may ultimately determine what needs to be measured and how measured outcomes are used. He pointed out that his presentation was based on input from a large number of research collaborators and community partners.

Wells reminded workshop participants of the World Health Organization definition of mental health: “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.”⁵ He argued that this broad definition is similar to the idea of recovery, and, in particular, the New Freedom Commission on Mental Health vision of recovery as a process in which people (with mental illness) are able to live, work, learn, and participate fully in their communities.⁶

Wells described three broad categories of definitions for recovery from mental disorders: clinical, research, and consumer or survivor. The clinical definition of recovery emphasizes symptom remission, return to functioning, and not using maintenance medication.⁷ An example of a definition from a research context focuses on sustained symptom remission that lasts more than 2 years, engagement in role activities, such as work and school, living independently, and age-appropriate relations.⁸ The consumer or survivor definitions focus on the process (rather than the outcome) and on a model of patient-centered approach to treatment.⁹ Consumer definitions also tend to emphasize strength-based qualities: hope, respect, and empowerment. Wells underscored that SAMHSA will have to be intentional about which type of definition, or mix of definitions, to use.

Wells also noted several life-stage and cultural issues that should be considered in the context of defining recovery. First, as an earlier workshop highlighted,¹⁰ the definition of disability for children is not well established, and that makes it more important to understand the context, the social risk factors, and the social determinants for younger age groups. Second, research has documented racial and ethnic biases in the determination of diagnosis and impairment across age groups, which has

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⁵See http://www.who.int/features/factfiles/mental_health/en/ [May 2016].

⁶See https://store.samhsa.gov/shin/content/SMA03-3831/SMA03-3831.pdf [May 2016].

⁷Torgalsbøen, A. (2005). What is recovery in schizophrenia? In L. Davidson, C. Harding, and L. Spaniol (Eds.), Recovery from Severe Mental Illnesses: Research Evidence and Implications for Practice (vol. 1, pp. 302-315). Boston, MA: Center for Psychiatric Rehabilitation, Sargent College of Health and Rehabilitation Sciences, Boston University.

⁸Liberman, R.P., and Kopelowicz, A. (2002). Recovery from schizophrenia: A challenge for the 21st century. International Review of Psychiatry, 14, 245-255.

⁹Bellack, A.S. (2006). Scientific and consumer models of recovery in schizophrenia: Concordance, contrasts, and implications. Schizophrenia Bulletin, 32(3), 432-442.

¹⁰National Academies of Sciences, Engineering, and Medicine. (2016). Measuring Serious Emotional Disturbance in Children: Workshop Summary. K. Marton, Rapporteur. Committee on National Statistics and Board on Behavioral, Cognitive, and Sensory Sciences, Division of Behavioral and Social Sciences and Education. Board on Health Sciences Policy, Institute of Medicine. Washington, DC: The National Academies Press.

implications for recovery. Finally, there are disparities in the community and social contexts in which people live, and those characteristics also influence recovery.

Wells cited several papers and books that discuss the history of policies related to recovery from mental disorders.¹¹ Most relevant to the current policy context is the Mental Health Parity and Addiction Equity Act of 2008 and its interface with the Affordable Care Act, which highlights the dynamic policy context for the current measurement goals.¹² Wells noted that there is limited early evidence of improved access to mental health and addiction care in recent years, but there is evidence of some financial relief. Gaps have been noted in terms of specialty providers in networks, and there is an apparent lack of parity in some plan descriptions. In addition, concern about stigma remains an issue. Another issue noted by Wells is related to gaps in reinstituting Medicaid coverage after reentry for people who have been involved with the criminal justice system, who tend to have high rates of substance use disorders and serious mental illness.

Wells highlighted a number of additional developments and issues relevant to the health and social policy contexts and the interface of the two, some of which may promote recovery or potentially have an adverse effect, if they direct attention elsewhere:

• Medicare Accountable Care Organizations demonstration programs
• Medicaid health homes
• “co-location” grants
• funds to improve the mental health and substance use capacity of federally qualified health care centers
• dual eligible financial integration demonstration
• Medicaid expansion and waivers (including, integrated care, “whole person”)
• U.S. Department of Veterans Affairs’ integrated care and homelessness initiatives
• social and behavioral risk factors in electronic health records for meaningful use

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¹¹Braslow, J.T. (2013). The manufacture of recovery. Annual Review of Clinical Psychology, 9, 781-809. doi: 10.1146/annurev-clinpsy-050212-185642.

¹²Barry, C.L., and Huskamp, H.A. (2011). Moving beyond parity—Mental health and addiction care under the ACA. New England Journal of Medicine, 365, 973-975.

• Centers for Medicare & Medicaid Services performance-based financing
• Community behavioral health centers and regulations
• Centers for Medicare & Medicaid Services Medicaid funding for housing
• Accountable Health Communities demonstration programs
• Robert Wood Johnson Foundation Culture of Health Initiative, a civic action focus for equity
• Patient-Centered Outcomes Research Institute patient-centered focus

In addition to national initiatives, Wells noted that state efforts can also have implications for recovery. For example, the Oregon Medicaid experiment was found to decrease depressive symptoms, but it also increased emergency room use.¹³ The expanded universal coverage in Massachusetts was also found to have a positive effect on mental health outcomes.¹⁴

Wells highlighted the California Mental Health Services Act as possibly the most prominently recovery-oriented state initiative. The initiative consists of a 1 percent tax on personal incomes over $1 million, which is used for recovery-focused programs. These programs range from full-service partnerships to lower levels of care, with a focus on recovery. Wells noted that there are difficulties with moving clients forward to lower levels of care because many of them are very ill. However, there is some evidence that full-service partnerships decrease homelessness, the number of days spent in jail, and the number of hospital inpatient days.

In addition to national and state initiatives, Wells also discussed several local programs with implications for recovery. The Los Angeles County Health Neighborhood initiative reflects the understanding that if improved functioning is the goal, then sometimes social policy changes are needed in addition to health policy changes. The initiative involves integrating services across county agencies for behavioral health clients and supporting communities in addressing social determinants of behav-

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¹³Baicker, K., Taubman, S.L., Allen, H.L., Bernstein, M., Gruber, J.H., Newhouse, J.P., Schneider, E.C., Wright, B.J., Zaslavsky, A.M., and Finkelstein, A.N. (2013). The Oregon experiment—Effects of Medicaid on clinical outcomes. New England Journal of Medicine, 368, 1713-1722.

¹⁴Courtenmanche C.J., and Zapata, D. (2013) Does universal coverage improve health? The Massachusetts Experience. Journal of Public Analysis and Management, 33(1), 36-69.

ioral health. For example, one program that is part of this effort focuses on secondary trauma prevention.

Another local initiative is the ThriveNYC initiative in New York City, which is based on identifying key new strategic directions that align multiple stakeholders to advance a public health approach to mental health. Wells said that there are more than 50 programs to exemplify and advance these new directions in New York City.

Wells noted that both the Los Angeles and New York City initiatives were to some extent based on the Community Partners in Care community-based demonstration in Los Angeles, for which he was the principal investigator.¹⁵ That project focused on quality-improvement programs for depression and involved a randomized demonstration of multisector coalitions for community engagement and planning in comparison with expert assistance. The study found that the community coalition model resulted in improved 6-month mental health quality of life, physical health, and mental wellness. It also reduced behavioral health hospitalizations and the risk of homelessness. Wells commented that these are all aspects of recovery under a broad definition, assessed in this study at the individual level.

Wells concluded by saying that recovery is a broad concept, and it is affected by the perspective of stakeholders. Changes in health insurance policy, services delivery policy, social policy, community culture, a variety of programs, and their integration across federal, state, and local levels are all relevant in the context of recovery.

Hortensia Amaro (University of Southern California) commented that it is useful to acknowledge that recovery is dependent on context, which includes the service delivery system and resources in the community. She underscored that the social determinants of health often differ across populations. Wells replied that in work he conducted in post-Katrina New

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¹⁵Miranda, J., Ong M.D., Jones, L., Chung, B., Dixon, E.L., Tang, L., Gilmore, J., Sherbourne, C., Ngo, V.K., Stockdale, S., Ramos, E., Belin, T.R., and Wells, K.B. (2013). Community-partnered evaluation of depression services for clients of community-based agencies in under-resourced communities in Los Angeles. Journal of General Internal Medicine, 28(10), 1279-1287.

Wells, K.B., Jones, J., Chung, J.B., Dixon, E.L., Tang, L., Gilmore, J., Sherbourne, C., Ngo, V.K., Ong, M.K., Stockdale, S., Ramos, E., Belin, T.R., and Miranda, J. (2013). Community-partnered, cluster-randomized comparative-effectiveness trial of community engagement and planning or resources for services to address depression disparities. Journal of General Internal Medicine, 28(10), 1268-1278.

Chung B., Ong, M., Ettner, S.L., Jones, F., Gilmore, J., McCreary, M., Sherbourne, C., Ngo, V., Koegel, P., Tang, L., Dixon, E., Miranda, J., Belin, T.R., and Wells, K.B. (2014). 12-month outcomes of community engagement versus technical assistance to implement depression collaborative care: A partnered, cluster- randomized, comparative-effectiveness trial. Annals of Internal Medicine, 161(10 Suppl), S23-S34.

Orleans, the disaster meant an immediate change in community context for people with severe mental illness. Had there been recovery measures that were sensitive to both the individual and the community, it would have been very useful at that time.

Dean Kilpatrick (Medical University of South Carolina) noted that there are several relevant concepts in this discussion. One is the subjective self-labeling of being in recovery or having recovered. The other is the objective question of how well the person is doing. However, there needs to be a comparative measure that factors in how the person was doing before recovery. An interesting methodological question is whether it is possible to measure how a person is doing now and how they were doing before, without having to do a longitudinal study. He also argued that the methodological implications of differences between people who label themselves as in recovery and those who do not are important to examine.

Wells said that an additional complicating factor in mental health recovery, and to some extent in addiction recovery, is the issue of stigma. Some people may not want to describe themselves as in recovery because that also discloses their diagnosis, and in the case of certain mental illnesses, such as schizophrenia, it is possible that they will never be completely free of symptoms. Thus, in that context the emphasis is on whether the person can function and enjoy life, and it is important not to focus the definition simply on symptom relief.

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