A Health Equity-Oriented Research Agenda Requires Comprehensive Community Engagement.

Health policy and research communities have taken new approaches to addressing health equity, going beyond traditional methods that often excluded the contributions of health care consumers and persons with lived experience. This reevaluation has the potential to drive critical improvements in how we conduct research and innovate policy toward reducing health and health care disparities in the United States. Such considerations have led Fountain House, the founder of the Clubhouse model for peer-based psychosocial rehabilitation for persons with histories of serious mental illness, to incorporate community-based participatory action research (CBPAR) protocols within their research and service programs. The combination of CBPAR research methods within novel participatory care settings like Clubhouse programs presents unique and informative opportunities for the advancement of innovative health equity approaches to consumer empowerment in health care. In this piece, the authors (two staff researchers and one member researcher) propose how CBPAR research methods conducted in Clubhouses can uniquely advance equity-focused research methods, and how the benefit and enhancements from equity-focused research are continuously applied, practiced, and accountable to the communities within which the research is conducted. Embedding CBPAR practices within participatory care settings like Clubhouses, creates novel opportunities for research work to not only become more equitable but also become a part of the rehabilitative process, empowering the main beneficiaries of the research with the means to sustain and achieve further improvements for themselves. Such experiences are particularly important within rehabilitation settings, where there is a process of reclaiming empowerment and self-efficacy over a disability or illness and the social circumstances surrounding those conditions. Different stakeholders can all play important roles in advancing health equity-oriented research agendas by leveraging CBPAR principles. Academics and others in the research community can more comprehensively embed CBPAR methods into the design of their research studies. A critical link exists among how researchers conduct their studies, how providers organize care delivery and support, and how health plans pay for and evaluate care. CBPAR-generated research needs to fully engage clinical teams to ensure that ongoing community-involved care settings have direct applications to real-world care delivery. It is equally important that providers fully engage with their communities as they adjust their approaches to supporting the populations they serve.

Personalizing Value in Cancer Care: The Case for Incorporating Patient Preferences Into Routine Clinical Decision Making.

Despite growing research demonstrating the potential for shared decision making (SDM) to improve health outcomes, patient preferences-including financial trade-offs-are still not routinely incorporated into health care decision making. As the US health care delivery system transitions to rewarding value-based care, the question of "value to whom?" assumes greater importance. To achieve the goals of value-based care, the patient voice must be incorporated into clinical decision making by embedding SDM as a routine part of clinical practice. Identified as a priority by the Centers for Medicare & Medicaid Services (CMS), SDM-related measures and initiatives have already been integrated into CMS' Center for Medicare and Medicaid Innovation (Innovation Center) demonstration projects (eg, the Oncology Care Model and Transforming Clinical Practice Initiative) and value-based payment programs (eg, the Merit-based Incentive Payment System, Medicare Shared Savings Program) to incentivize more proactive SDM engagement between patients and their providers. Furthermore, CMS has also integrated formal shared decision-making encounters into coverage and reimbursement policies (eg, for implantable cardioverter defibrillators), demonstrating a growing interest in SDM and its potential for eliciting and promoting the integration of patient preferences into the clinical decision-making process. In addition to increasing policy efforts to promote SDM, we need more research investments aimed at understanding how to optimize the science and practice of meaningful SDM. The current landscape and proposed road map for next steps in research, outlined in this review article, will help ensure the transition of pilots and research projects regarding the implementation of SDM into sustainable solutions.

The "Preparation for Shared Decision-Making" Tool for Women With Advanced Breast Cancer: Qualitative Validation Study.

BACKGROUND: The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. OBJECTIVE: Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. METHODS: We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. RESULTS: Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. CONCLUSIONS: This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool's implementation in the clinical workflow and its impact on patient outcomes.

Achieving meaningful use of health information technology: a guide for physicians to the EHR incentive programs.

Over 30,000 clinicians have already qualified to receive initial incentive payments for the meaningful use of electronic health records (EHRs) through the Centers for Medicare & Medicaid Services (CMS) EHR Incentive Programs. However, 2012 is the final year to receive maximum incentive payments, and many physicians still have questions regarding meaningful use objectives and how to register for, report, and attest to meaningful use. We provide herein an overview of the Medicare and Medicaid EHR Incentive Programs and guide physicians in the process of how to demonstrate meaningful use of health information technology.

How health plans, health systems, and others in the private sector can stimulate 'meaningful use'.

Provisions of the American Recovery and Reinvestment Act authorize incentive payments to hospitals and clinicians who become "meaningful users" of health information technology (IT). We argue that various private-sector entities--commercial payers, employers, consumer groups, health care ratings organizations, large provider organizations, and regulatory bodies--can further accelerate health IT adoption by implementing strategies that are complementary to the Medicare and Medicaid incentive programs. This paper describes these strategies and potential approaches to implementation.

Sleep and the time course of motor skill learning.

Growing evidence suggests that sleep plays an important role in the process of procedural learning. Most recently, sleep has been implicated in the continued development of motor-skill learning following initial acquisition. However, the temporal evolution of motor learning before and after sleep, the effects of different training regimens, and the long-term development of motor learning across multiple nights of sleep remain unknown. Here, we report data for subjects trained and retested on a sequential finger-tapping task across multiple days. The findings demonstrate firstly that following initial training, small practice-dependent improvements are possible before, but not following the large practice-independent gains that develop across a night of sleep. Secondly, doubling the quantity of initial training does not alter the amount of subsequent sleep-dependent learning that develops overnight. Thirdly, the amount of sleep-dependent learning does not correlate with the amount of practice-dependent learning achieved during training, suggesting the existence of two discrete motor-learning processes. Finally, whereas the majority of sleep-dependent motor-skill learning develops during the first night of sleep following training, additional nights of sleep still offer continued improvements.

Conceptual framework for a new tool for evaluating the quality of diabetes consumer-information Web sites.

BACKGROUND: Most existing tools for measuring the quality of Internet health information focus almost exclusively on structural criteria or other proxies for quality of information, rather than evaluating information accuracy and comprehensiveness. OBJECTIVE: This research sought to build a conceptual framework that could lay the groundwork for a robust performance-measurement system for evaluating the quality of Internet health information. METHODS: Application of the quality-of-care measurement paradigm to developing a conceptual framework for defining and evaluating the quality of diabetes consumer-information Web sites. RESULTS: Performance measures related to accuracy and comprehensiveness of information can be added to structural criteria to provide a more-robust approach to Web site evaluation. CONCLUSIONS: The development and implementation of a reliable and valid method for evaluating the quality of Internet health sites could provide lay people with a tool to identify useful content more easily and distinguish between beneficial and misleading information.

Design and testing of a tool for evaluating the quality of diabetes consumer-information Web sites.

BACKGROUND: Most existing tools for measuring the quality of Internet health information focus almost exclusively on structural criteria or other proxies for quality information rather than evaluating actual accuracy and comprehensiveness. OBJECTIVE: This research sought to develop a new performance-measurement tool for evaluating the quality of Internet health information, test the validity and reliability of the tool, and assess the variability in diabetes Web site quality. METHODS: An objective, systematic tool was developed to evaluate Internet diabetes information based on a quality-of-care measurement framework. The principal investigator developed an abstraction tool and trained an external reviewer on its use. The tool included 7 structural measures and 34 performance measures created by using evidence-based practice guidelines and experts' judgments of accuracy and comprehensiveness. RESULTS: Substantial variation existed in all categories, with overall scores following a normal distribution and ranging from 15% to 95% (mean was 50% and median was 51%). Lin's concordance correlation coefficient to assess agreement between raters produced a rho of 0.761 (Pearson's r of 0.769), suggesting moderate to high agreement. The average agreement between raters for the performance measures was 0.80. CONCLUSIONS: Diabetes Web site quality varies widely. Alpha testing of this new tool suggests that it could become a reliable and valid method for evaluating the quality of Internet health sites. Such an instrument could help lay people distinguish between beneficial and misleading information.