Chronic condition self-management surveillance: what is and what should be measured?

INTRODUCTION: The rapid growth in chronic disease prevalence, in particular the prevalence of multiple chronic conditions, poses a significant and increasing burden on the health of Americans. Maximizing the use of proven self-management (SM) strategies is a core goal of the US Department of Health and Human Services. Yet, there is no systematic way to assess how much SM or self-management support (SMS) is occurring in the United States. The purpose of this project was to identify appropriate concepts or measures to incorporate into national SM and SMS surveillance. METHODS: A multistep process was used to identify candidate concepts, assess existing measures, and select high-priority concepts for further development. A stakeholder survey, an environmental scan, subject matter expert feedback, and a stakeholder priority-setting exercise were all used to select the high-priority concepts for development. RESULTS: The stakeholder survey gathered feedback on 32 candidate concepts; 9 concepts were endorsed by more than 66% of respondents. The environmental scan indicated few existing measures that adequately reflected the candidate concepts, and those that were identified were generally specific to a defined condition and not gathered on a population basis. On the basis of the priority setting exercises and environmental scan, we selected 1 concept from each of 5 levels of behavioral influence for immediate development as an SM or SMS indicator. CONCLUSION: The absence of any available measures to assess SM or SMS across the population highlights the need to develop chronic condition SM surveillance that uses national surveys and other data sources to measure national progress in SM and SMS.

Consumers and families as partners in implementing evidence-based practice.

Evidence-based practices represent an extremely important advance in the mental health system, and NAMI continues its support of efforts to develop and implement these interventions. Moving forward, the authors envision consumers and family members playing a much greater role in developing and promulgating EBP. Individually and corporately, consumers can: facilitate research that will expedite equitable implementation of existing and new EBPs; play a significant role in providing services; play a lead role in promoting policies that support EBP implementation through the development and use of advocacy toolkits; influence provider adaptation of EBP through the broad development and testing of resources that urge EBP consumerism; and, advance through the monitoring of EBP. These consumer-led activities generally have been relegated to a lower level of importance in the current research, policy, and funding environment leading to poorly developed partnerships and "buy in" from the consumer community. It is important that the level of importance of these activities and the role of consumers and families be rethought. Further advancement of EBP will require implementing a three-track program of research, including a much greater focus on action research and the involvement of consumers as research and evaluation partners. This is the fastest and most effective way to achieve breakthrough results in practices for treating people with serious mental illnesses and to address the serious and growing problem of racial and cultural disparities and the disconnect that causes between those individuals and the means to their recovery. The hope of consumers and families rest on the ability to initiate action now.