This summary describes the presentations and discussions at the Workshop on Integrating New Measures of Recovery from Substance Use and Mental Disorder into the Substance Abuse and Mental Health Services Administration’s (SAMHSA’s) Data Collection Programs, which was held in Washington, D.C., in February 2016. The workshop was organized as part of an effort to assist SAMHSA and the Office of the Assistant Secretary for Planning and Evaluation (ASPE) of the U.S. Department of Health and Human Services (DHHS) in their responsibilities to expand the collection of behavioral health data in several areas. The workshop was structured to bring together experts in recovery from substance use and mental disorders, and experts in health survey methods to facilitate discussion of measures and mechanisms most promising for expanding SAMHSA’s data collections in this area.
The overall effort is being overseen by the Standing Committee on Integrating New Behavioral Health Measures into the Substance Abuse and Mental Health Services Administration’s Data Collection Programs.1 In addition to the topics covered by this workshop, SAMHSA and ASPE are interested in expanding data collection on serious emotional disturbance in children, on specific mental illness diagnoses with functional
1For a description of the overall study, see http://sites.nationalacademies.org/DBASSE/CNSTAT/Behavioral_Health_Measures_Committee/index.htm [March 2016].
impairment, and on trauma. Workshops on all four topics are being convened as part of the overall effort.
Neil Russell (SAMHSA) described his agency’s goals in exploring how to best measure and expand SAMHSA’s data collection programs to include measures of recovery from substance use or mental disorders. He said that SAMHSA does not currently collect nationally representative data on recovery, but the agency has a working definition of recovery: see Box 1-1. (See Chapter 3 for a more detailed discussion.) SAMHSA’s goal is to measure recovery and to understand the covariates associated with recovery.
Russell pointed out that there are several methodological challenges and questions related to collecting data on recovery. Assuming that there is agreement on the definition of recovery, and questions are added to a general population survey, one decision that needs to be made is which survey respondents should be asked the questions on recovery: all respon-
dents? only those who had an issue in the past year or past month? only those who self-identify as having a substance use disorder or a mental health condition? or only those who self-identify as being in recovery? If not everyone is to be asked all of the questions, are there existing survey instruments that can be used for the screening? One option may be to ask people whether they self-identify as being in recovery and use that question to determine who gets additional follow-up questions on this topic.
One of the challenges described by Russell is that some of the disorders are episodic or chronic disorders that relapse and remit over time. One question is whether to measure remission from symptoms and symptom relapse, and how these concepts can be operationalized. Another question is whether to include people with subthreshold criteria.
Deciding how to handle cases with co-occurring mental or substance use disorders was another challenge described by Russell. The question is whether these respondents would get different sets of questions for different disorders. More generally, SAMHSA would like to know if there are existing instruments that could be used to measure recovery or if SAMHSA’s definition necessitates the development of a new set of questions.
Russell described the parameters that SAMHSA has defined for the data collection on recovery. Using SAMHSA’s definition of recovery (see Chapter 3), the goal is to produce estimates of the number of people in the general population who are in recovery or who have recovered from a substance use or mental disorder. SAMHSA also wants to understand the covariates associated with recovery, including substance use and mental health disorders, level of functioning (however defined), language spoken, race and ethnicity, gender, age, education, income, medical conditions, and health insurance status. The agency would like to be able to produce national estimates based on the data. The periodicity of the data collection has not been determined yet, and SAMHSA would like input on the ideal frequency for this subject matter.
SAMHSA has considered several possible data collections approaches, Russell said. One option would be to add questions on recovery to SAMHSA’s existing National Survey on Drug Use and Health (NSDUH) survey. However, he noted, that survey is already very long, and adding a substantial number of new questions would require dropping something else. Another option would be to reinstate the Mental Health Surveillance Study (MHSS), which was a small study conducted as a follow-on to the NSDUH between 2008-2012. The MHSS involved asking in-depth questions of a subset of the NSDUH respondents as part of an additional interview, and a similar mechanism could work for questions about recovery. The third option described by Russell was to develop a new data collection program. This may be necessary, for example, if the expert view is
that a longitudinal design is needed to properly measure recovery. Finally, SAMHSA could potentially rely on secondary data sources to produce estimates, if data that meet SAMHSA’s goals already exist. Russell mentioned that the MHSS data were used to develop model-based estimation procedures that were then applied to the NSDUH data. A similar strategy could work for producing estimates of recovery. Model-based estimation procedures could also be applied to other potential data sources.
D.E.B. Potter (ASPE) added that across DHHS there is a desire to measure the quality of health care that is delivered to populations with behavioral health needs, and measuring outcomes is a priority. In the area of quality measurement, person-reported outcomes are important, and the discussions at the workshop will likely inform a variety of efforts across DHHS.
Kim Mueser (Boston University) asked Russell to clarify whether SAMHSA’s interest is in recovery from any diagnosable mental illness or in severe mental illness? Russell said that SAMHSA is interested in both, as well as recovery from substance use disorders. However, he acknowledged that it may be very difficult to ascertain severe mental illness within the framework of some of the potential approaches he discussed, such as the current NSDUH. Mueser noted that limiting the data collection to people who receive some type of disability benefits, such as Social Security Disability or Supplemental Security Income, due to a mental disorder may be more feasible then including everyone who has had a diagnosable mental illness. The population receiving disability benefits due to a mental disorder is more likely to include individuals with schizophrenia or a major persistent mood disorder.
The specific statement of task for the workshop, shown in Box 1-2, was developed on the basis of the charge for the overall project, which was to expand data collections on several behavioral health topics. The main goals of the workshop were to discuss options for collecting data and producing estimates of recovery from substance use and mental disorders, including available measures and associated possible data collection mechanisms.
This summary describes the workshop presentations and the discussions that followed each topic. The workshop agenda is in Appendix A, and biographical sketches of the presenters and of the steering committee members are in Appendix B.
Chapter 2 discusses the policy context and key concepts associated with measuring recovery. A discussion of the policy context of measuring recovery from substance use is followed by a similar discussion for measuring recovery from mental disorders. Chapters 3-5 focus on definitions of recovery and possible ways of operationalizing the concept. Chapter 3 describes SAMHSA’s working definition of recovery. Chapter 4 discusses definitions, operationalization challenges and implications for measurement specific to measuring recovery from substance use. Chapter 5 discusses similar issues in the context of recovery from mental disorders. The concept of positive mental health is also introduced in Chapter 5.
Chapter 6 covers existing measures of recovery, with separate sections dedicated to measures of recovery from substance use and from mental disorders. Chapter 7 discusses data collection designs, including a brief overview of SAMHSA’s recovery measurement pilot study, and an overview of different data collection strategies suitable for measuring recovery from both substance use and mental disorders. Tradeoffs associated with different data collection strategies are also described. Chapter 8 summarizes the key themes that emerged from the discussions and highlights possible next steps.
This summary has been prepared by the workshop rapporteur as a factual summary of what occurred at the workshop. The steering committee’s role was limited to planning and convening the workshop. The views contained in the summary are those of individual workshop participants and do not necessarily represent the views of all workshop participants, the steering committee, or the National Academies of Sciences, Engineering, and Medicine.
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