Stakeholder Engagement in Late-Stage Translation Research and Implementation Science: Perspectives From the National Heart, Lung, and Blood Institute.

Stakeholder engagement is crucial for turning discovery into health. Although it is a highly effective approach for research in general, it is an essential component in late-stage translation research and implementation science in which the central objective is to accelerate the sustained uptake and integration of proven-effective interventions into routine clinical and public health practice. Where the stakeholder is an entire community, the term community engagement has often been used and has traditionally been defined as "the process of working collaboratively with groups of people who are affiliated by geographic proximity, special interests, or similar situations with respect to issues affecting their well-being." More recently, this definition has been expanded to specifically incorporate pre-study needs assessment, shared decision making about study themes and specific aims, data collection and analysis, interpretation and dissemination of research findings, and plans for scale-up and spread of research findings. In this article, the authors explore the scientific foundations of stakeholder engagement in biomedical research and public health practice. They highlight the strategic vision goals and objectives of the National Heart, Lung, and Blood Institute and the commitment to advance dissemination and implementation research and community-engaged participatory research. The authors conclude with comments on the stakeholder engagement efforts in the National Heart, Lung, and Blood Institute-funded TREIN/Hy-TREC consortium's work published in this issue of Global Heart and their perspectives on the challenges and opportunities as we chart the future together.

Raising Public Awareness of Clinical Trials: Development of Messages for a National Health Communication Campaign.

Clinical trials are essential for developing new and effective treatments and improving patient quality of life; however, many trials cannot answer their primary research questions because they fall short of their recruitment goals. This article reports the results of formative research conducted in two populations, the public and primary care physicians, to identify messages that may raise awareness and increase interest in clinical trials and be used in a national communication campaign. Results suggested that participants were primarily motivated to participate in clinical trials out of a self-interest to help themselves first. Messages illustrated that current treatments were tested via clinical trials, helped normalize trials as routine practices, and reduced concerns over trying something new first. Participants wanted messages that portray trials as state-of-the-art choices that offer some hope, show people like themselves, and are described in a clear, concise manner with actionable steps for them to take. The study revealed some differences in message salience, with healthy audiences exhibiting lower levels of interest. Our results suggest that targeted messages are needed, and that communication with primary health-care providers is an important and necessary component in raising patient awareness of the importance of clinical trials.

NCI's Physician Data Query (PDQ®) cancer information summaries: history, editorial processes, influence, and reach.

In the National Cancer Act of 1971, the Director of the National Cancer Institute (NCI) was given a mandate to "Collect, analyze, and disseminate all data useful in the prevention, diagnosis, and treatment of cancer, including the establishment of an International Cancer Research Data Bank (ICRDB) to collect, catalog, store, and disseminate insofar as feasible the results of cancer research undertaken in any country for the use of any person involved in cancer research in any country" (National Cancer Act of 1971, S 1828, 92nd Congress, 1st Sess (1971)). In subsequent legislation, the audience for NCI's information dissemination activities was expanded to include physicians and other healthcare professionals, patients and their families, and the general public, in addition to cancer researchers. The Institute's response to these legislative requirements was to create what is now known as the Physician Data Query (PDQ®) cancer information database. From its beginnings in 1977 as a database of NCI-sponsored cancer clinical trials, PDQ has grown to include extensive information about cancer treatment, screening, prevention, supportive and palliative care, genetics, drugs, and more. Herein, we describe the history, editorial processes, influence, and global reach of one component of the PDQ database, namely its evidence-based cancer information summaries for health professionals. These summaries are widely recognized as important cancer information and education resources, and they further serve as foundational documents for the development of other cancer information products by NCI and other organizations.

AccrualNet: Addressing Low Accrual Via a Knowledge-Based, Community of Practice Platform.

PURPOSE: Present the design and initial evaluation of a unique, Web-enabled platform for the development of a community of practice around issues of oncology clinical trial accrual. METHODS: The National Cancer Institute (NCI) conducted research with oncology professionals to identify unmet clinical trial accrual needs in the field. In response, a comprehensive platform for accrual resources, AccrualNet, was created by using an agile development process, storyboarding, and user testing. Literature and resource searches identified relevant content to populate the site. Descriptive statistics were tracked for resource and site usage. Use cases were defined to support implementation. RESULTS: ACCRUALNET HAS FIVE LEVELS: (1) clinical trial macrostages (prestudy, active study, and poststudy); (2) substages (developing a protocol, selecting a trial, preparing to open, enrolling patients, managing the trial, retaining participants, and lessons learned); (3) strategies for each substage; (4) multiple activities for each strategy; and (5) multiple resources for each activity. Since its launch, AccrualNet has had more than 45,000 page views, with the Tools & Resources, Conversations, and Training sections being the most viewed. Total resources have increased 69%, to 496 items. Analysis of articles in the site reveals that 22% are from two journals and 46% of the journals supplied a single article. To date, there are 29 conversations with 43 posts. Four use cases are discussed. CONCLUSION: AccrualNet represents a unique, centralized comprehensive-solution platform to systematically capture accrual knowledge for all stages of a clinical trial. It is designed to foster a community of practice by encouraging users to share additional strategies, resources, and ideas.

Developing partnerships to reduce disparities in cancer screening.

BACKGROUND: Interventions in scientific settings to improve the well-being of women who are not regularly screened for cancer have failed. Consequently, community-based prevention and control efforts are needed. COMMUNITY CONTEXT: From 2003 through 2007, three federal agencies and 1 nongovernmental agency collaborated with county-level public health counterparts from 6 states to address screening disparities in cervical and breast cancer in counties with the highest prevalence. This case study describes lessons learned from Team Up, a model pilot program. METHODS: We conducted a descriptive qualitative case study including 5 Southern states and 1 Midwestern state: Alabama, Georgia, Kentucky, Missouri, South Carolina, and Tennessee. The 6 states underwent a 5-step process to adopt, adapt, and implement 1 of 3 evidence-based interventions designed for cervical and breast cancer screening. OUTCOME: The 6 participating states had various levels of success. Participating states formed and sustained viable interorganizational public health partnerships throughout the pilot program and beyond. INTERPRETATION: Although this innovative pilot faced many difficulties, participants overcame substantial obstacles and produced many key accomplishments. Team Up brought together 2 challenging public health strategies: the translation of evidence-based approaches to communities and populations, and partnerships among diverse people and organizations. Case study results suggest that using a mix of approaches can promote the transference of evidence from research into practice through local, regional, and national partnerships.

Variations in breast carcinoma treatment in older medicare beneficiaries: is it black or white.

BACKGROUND: To evaluate associations between race and breast carcinoma treatment. METHODS: Data from 984 black and 849 white Medicare beneficiaries 67 years or older with local breast carcinoma and a subset of 732 surviving women interviewed 3-4 years posttreatment were used to calculate adjusted odds of treatment, controlling for age, comorbidity, attitudes, region, and area measures of socioeconomic and health care resources. RESULTS: Sixty-seven percent of women received a mastectomy and 33% received breast-conserving surgery. The odds of radiation omission were 48% higher (95% confidence interval [CI] 1.01-2.19) for blacks than for whites after considering covariates, but the absolute number of women who failed to receive this modality was small (11%). In race-stratified models, the odds of having radiation omitted were significantly higher among blacks living greater distances from a cancer center (vs. lesser) or living in areas with high poverty (vs. low), but these factors did not affect radiation use among whites. Among those interviewed, blacks reported perceiving more ageism and racism in the health care system than whites (P = 0.001). The independent odds of receiving mastectomy (vs. breast conservation and radiation) were 2.72 times higher (95% CI 1.25-5.92) among women reporting the highest quartile of perceived ageism scores, compared with the lowest, and higher perceived ageism tended to be associated with higher odds of radiation omission (P = 0.06). CONCLUSIONS: Older black women with localized breast carcinoma may have a different experience obtaining treatment than their white counterparts. The absolute number of women receiving nonstandard care was small and the effects were small to moderate. However, if these patterns persist, it will be important to evaluate whether such experiences contribute to within-stage race mortality disparities.