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1.  More Than Words: Patients' Views on Apology and Disclosure When Things Go Wrong in Cancer Care 
Objective
Guidelines on apology and disclosure after adverse events and errors have been in place for over five years. This study examines whether patients consider recommended responses to be appropriate and desirable, and whether clinicians' actions after adverse events are consistent with recommendations.
Methods
Patients who believed that something had gone wrong during their cancer care were identified. During in-depth interviews, patients described the event, clinicians' responses, and their reactions.
Results
78 patients were interviewed. Patients' valued apology and expressions of remorse, empathy and caring, explanation, acknowledgement of responsibility, and efforts to prevent recurrences, but these key elements were often missing. For many patients, actions and evidence of clinician learning were most important.
Conclusion
Patients' reports of apology and disclosure when they believe something has gone wrong in their care suggest that clinicians' responses continue to fall short of expectations.
Practice Implications
Clinicians preparing to talk with patients after an adverse event or medical error should be aware that patients expect their actions to be congruent with their words of apology and caring. Healthcare systems need to support clinicians throughout the disclosure process, and facilitate both system and individual learning to prevent recurrences.
doi:10.1016/j.pec.2011.07.010
PMCID: PMC3214230  PMID: 21824739
2.  Streamlining Research by Using Existing Tools 
Over the past two decades, the health research enterprise has matured rapidly, and many recognize an urgent need to translate pertinent research results into practice, to help improve the quality, accessibility, and affordability of U.S. health care. Streamlining research operations would speed translation, particularly for multi-site collaborations. However, the culture of research discourages reusing or adapting existing resources or study materials. Too often, researchers start studies and multi-site collaborations from scratch—reinventing the wheel. Our team developed a compendium of resources to address inefficiencies and researchers’ unmet needs and compiled them in a research toolkit website (www.ResearchToolkit.org). Through our work, we identified philosophical and operational issues related to disseminating the toolkit to the research community. We explore these issues here, with implications for the nation’s investment in biomedical research.
doi:10.1111/j.1752-8062.2011.00296.x
PMCID: PMC3170080  PMID: 21884513
3.  A Framework for Making Patient-Centered Care Front and Center 
The Permanente Journal  2012;16(3):49-53.
The concept of patient-centered care has received increased attention in recent years and is now considered an essential aspiration of high-quality health care systems. Because of technologic advances as well as changes in the organization and financing of care delivery, contemporary health care has evolved tremendously since the concept of patient-centeredness was introduced in the late 1980s. Historically, those advocating patient-centered care have focused on the relationship between the patient and the physician or care team. Although that relationship is still integral, changes to the health care system suggest that a broader range of factors may affect the patient-centeredness of health care experiences. A multidimensional conceptualization of patient-centered care and examples from our health care system illustrate how clinical, structural, and interpersonal attributes can collectively influence the patient's experience. The proposed framework is designed to enable any health system to identify ways in which care could be more patient-centered and move toward a goal of making it a “systems property.”
PMCID: PMC3442762  PMID: 23012599
4.  Improving Modern Cancer Care Through Information Technology 
American journal of preventive medicine  2011;40(5 Suppl 2):S198-S207.
The cancer care system is increasingly complex, marked by multiple hand-offs between primary care and specialty providers, inadequate communication among providers, and lack of clarity about a “medical home” (the ideal accountable care provider) for cancer patients. Patients and families often cite such difficulties as information deficits, uncoordinated care, and insufficient psychosocial support. This article presents a review of the challenges of delivering well coordinated, patient-centered cancer care in a complex modern healthcare system. An examination is made of the potential role of information technology (IT) advances to help both providers and patients. Using the published literature as background, a review is provided of selected work that is underway to improve communication, coordination, and quality of care. Also discussed are additional challenges and opportunities to advancing understanding of how patient data, provider and patient involvement, and informatics innovations can support high-quality cancer care.
doi:10.1016/j.amepre.2011.01.014
PMCID: PMC3119205  PMID: 21521595
5.  A New Audience Segmentation Tool for African Americans: The Black Identity Classification Scale 
Journal of health communication  2010;15(5):532-554.
Many health communications target African Americans in an attempt to remediate race-based health disparities. Such materials often assume that African Americans are culturally homogeneous; however, research indicates that African Americans are heterogeneous in their attitudes, behaviors, and beliefs. The Black Identity Classification Scale (BICS) was designed as a telephone-administered tool to segment African American audiences into 16 ethnic identity types. The BICS was pretested using focus groups, telephone pretests, and a pilot study (n=306). The final scale was then administered to 625 Black adults participating in a dietary intervention study, where it generally demonstrated good internal consistency reliability. The construct validity of the BICS was also explored by comparing participants’ responses to culturally associated survey items. The distribution of the 16 BICS identity types in the intervention study is presented, as well as select characteristics for participants with core identity components. Although additional research is warranted, these findings suggest that the BICS has good psychometric properties and may be an effective tool for identifying African American audience segments.
doi:10.1080/10810730.2010.492563
PMCID: PMC3151736  PMID: 20677057
6.  Testing Whether Decision Aids Introduce Cognitive Biases: Results of a Randomized Trial 
Patient education and counseling  2009;80(2):158-163.
Objective
Women at high risk of breast cancer face a difficult decision whether to take medications like tamoxifen to prevent a first breast cancer diagnosis. Decision aids (DAs) offer a promising method of helping them make this decision. But concern lingers that DAs might introduce cognitive biases.
Methods
We recruited 663 women at high risk of breast cancer and presented them with a DA designed to experimentally test potential methods of identifying and reducing cognitive biases that could influence this decision, by varying specific aspects of the DA across participants in a factorial design.
Results
Participants were susceptible to a cognitive bias—an order effect—such that those who learned first about the risks of tamoxifen thought more favorably of the drug than women who learned first about the benefits. This order effect was eliminated among women who received additional information about competing health risks.
Conclusion
We discovered that the order of risk/benefit information influenced women’s perceptions of tamoxifen. This bias was eliminated by providing contextual information about competing health risks.
doi:10.1016/j.pec.2009.10.021
PMCID: PMC2889196  PMID: 20004545
7.  Subregions of the inferior parietal lobule are affected in the progression to AD 
Neurobiology of aging  2010;31(8):1304-1311.
Changes in several regions within the brain have been associated with progression from healthy aging to Alzheimer's disease (AD), including the hippocampus, entorhinal cortex, and more recently, the inferior parietal lobule (IPL). In this study, the IPL was divided into three subregions: the gyrus, the banks of the sulcus, and the fundus to determine if these regions are independent of medial temporal regions in the progression of AD. Participants of the Alzheimer's Disease Neuroimaging Initiative (ADNI; n=54) underwent a structural MRI scan and neuropsychological exam, and were categorized as normal controls, mild cognitively impaired (MCI), or AD. FreeSurfer was initially used to identify the boundaries of the IPL. Each subregion was then manually traced based on FreeSurfer curvature intensities. Multivariate analyses of variance were used to compare groups. Results suggest that changes in thickness of the banks of the inferior parietal lobule are occurring early in the progression from normal to MCI, followed by changes in the gyrus and fundus, and these measures are related to neuropsychological performance.
doi:10.1016/j.neurobiolaging.2010.04.026
PMCID: PMC2907057  PMID: 20570398
Alzheimer's disease; MCI; MRI; Inferior parietal lobule
8.  Media Messages About Cancer: What Do People Understand? 
Journal of health communication  2010;15(Suppl 2):126-145.
Health messages on television and other mass media have the potential to significantly influence the public’s health-related knowledge and behaviors, but little is known about people’s ability to comprehend such messages. To investigate whether people understood the spoken information in media messages about cancer prevention and screening, we recruited 44 adults from 3 sites to view 6 messages aired on television and the internet. Participants were asked to paraphrase main points and selected phrases. Qualitative analysis methods were used to identify what content was correctly and accurately recalled and paraphrased, and to describe misunderstandings and misconceptions. While most participants accurately recalled and paraphrased the gist of the messages used here, over-generalization (e.g., believing preventative behaviors to be more protective than stated), loss of details (e.g., misremembering the recommended age for screening) and confusion or misunderstandings around specific concepts (e.g., interpreting “early stage” as the stage in one’s life rather than cancer stage) were common. Variability in the public’s ability to understand spoken media messages may limit the effectiveness of both pubic health campaigns and provider-patient communication. Additional research is needed to identify message characteristics which enhance understandability and improve comprehension of spoken media messages around cancer.
doi:10.1080/10810730.2010.499983
PMCID: PMC2947749  PMID: 20845199
9.  Challenges in Researching Racially Sensitive Topics in HMOs 
doi:10.1037/a0016389
PMCID: PMC2735257  PMID: 19594260
HMO; health plans; health disparities; cultural sensitivity; ethnic identity; African American
10.  Facilitating Health Data Sharing Across Diverse Practices and Communities 
Health data sharing with and among practices is a method for engaging rural and underserved populations, often with strong histories of marginalization, in health research. The Institute of Translational Health Sciences, funded by a National Institutes of Health Clinical and Translational Science Award, is engaged in the LC Data QUEST project to build practice and community based research networks with the ability to share semantically aligned electronic health data. We visited ten practices and communities to assess the feasibility of and barriers to developing data sharing networks. We found that these sites had very different approaches and expectations for data sharing. In order to support practices and communities and foster the acceptance of data sharing in these settings, informaticists must take these diverse views into account. Based on these findings, we discuss system design implications and the need for flexibility in the development of community-based data sharing networks.
PMCID: PMC3041543  PMID: 21347138
11.  Web-Based Smoking-Cessation Program 
Background
Initial trials of web-based smoking-cessation programs have generally been promising. The active components of these programs, however, are not well understood. This study aimed to (1) identify active psychosocial and communication components of a web-based smoking-cessation intervention and (2) examine the impact of increasing the tailoring depth on smoking cessation.
Design
Randomized fractional factorial design.
Setting
Two HMOs: Group Health in Washington State and Henry Ford Health System in Michigan.
Participants
1866 smokers.
Intervention
A web-based smoking-cessation program plus nicotine patch. Five components of the intervention were randomized using a fractional factorial design: high- versus low-depth tailored success story, outcome expectation, and efficacy expectation messages; high- versus low-personalized source; and multiple versus single exposure to the intervention components.
Measurements
Primary outcome was 7 day point-prevalence abstinence at the 6-month follow-up.
Findings
Abstinence was most influenced by high-depth tailored success stories and a high-personalized message source. The cumulative assignment of the three tailoring depth factors also resulted in increasing the rates of 6-month cessation, demonstrating an effect of tailoring depth.
Conclusions
The study identified relevant components of smoking-cessation interventions that should be generalizable to other cessation interventions. The study also demonstrated the importance of higher-depth tailoring in smoking-cessation programs. Finally, the use of a novel fractional factorial design allowed efficient examination of the study aims. The rapidly changing interfaces, software, and capabilities of eHealth are likely to require such dynamic experimental approaches to intervention discovery.
doi:10.1016/j.amepre.2007.12.024
PMCID: PMC2697448  PMID: 18407003
12.  The Role of Engagement in a Tailored Web-Based Smoking Cessation Program: Randomized Controlled Trial 
Background
Web-based programs for health promotion, disease prevention, and disease management often experience high rates of attrition. There are 3 questions which are particularly relevant to this issue. First, does engagement with program content predict long-term outcomes? Second, which users are most likely to drop out or disengage from the program? Third, do particular intervention strategies enhance engagement?
Objective
To determine: (1) whether engagement (defined by the number of Web sections opened) in a Web-based smoking cessation intervention predicts 6-month abstinence, (2) whether particular sociodemographic and psychographic groups are more likely to have lower engagement, and (3) whether particular components of a Web-based smoking cessation program influence engagement.
Methods
A randomized trial of 1866 smokers was used to examine the efficacy of 5 different treatment components of a Web-based smoking cessation intervention. The components were: high- versus low-personalized message source, high- versus low-tailored outcome expectation, efficacy expectation, and success story messages. Moreover, the timing of exposure to these sections was manipulated, with participants randomized to either a single unified Web program with all sections available at once, or sequential exposure to each section over a 5-week period of time. Participants from 2 large health plans enrolled to receive the online behavioral smoking cessation program and a free course of nicotine replacement therapy (patch). The program included: an introduction section, a section focusing on outcome expectations, 2 sections focusing on efficacy expectations, and a section with a narrative success story (5 sections altogether, each with multiple screens). Most of the analyses were conducted with a stratification of the 2 exposure types. Measures included: sociodemographic and psychosocial characteristics, Web sections opened, perceived message relevance, and smoking cessation 6-months following quit date.
Results
The total number of Web sections opened was related to subsequent smoking cessation. Participants who were younger, were male, or had less formal education were more likely to disengage from the Web-based cessation program, particularly when the program sections were delivered sequentially over time. More personalized source and high-depth tailored self-efficacy components were related to a greater number of Web sections opened. A path analysis model suggested that the impact of high-depth message tailoring on engagement in the sequentially delivered Web program was mediated by perceived message relevance.
Conclusions
Results of this study suggest that one of the mechanisms underlying the impact of Web-based smoking cessation interventions is engagement with the program. The source of the message, the degree of message tailoring, and the timing of exposure appear to influence Web-based program engagement.
doi:10.2196/jmir.1002
PMCID: PMC2630833  PMID: 18984557
Internet, World Wide Web; smoking cessation; engagement
13.  How Health Care Systems Can Begin to Address the Challenge of Limited Literacy 
doi:10.1111/j.1525-1497.2006.00544.x
PMCID: PMC1831564  PMID: 16881952
health care systems; self-management; health literacy; literacy
14.  Interest in an Online Smoking Cessation Program and Effective Recruitment Strategies: Results From Project Quit 
Background
The Internet is a promising venue for delivering smoking cessation treatment, either as a stand-alone program or as an adjunct to pharmacotherapy. However, there is little data to indicate what percent of smokers are interested in receiving online smoking cessation services or how best to recruit smokers to Internet-based programs.
Objective
Using a defined recruitment sample, this study aimed to identify the percentage of smokers who expressed interest in or enrolled in Project Quit, a tailored, online, cognitive-behavioral support program offered with adjunctive nicotine replacement therapy patches. In addition, we examined the effectiveness of several individual-level versus population-level recruitment strategies.
Methods
Members from two large health care organizations in the United States were invited to participate in Project Quit. Recruitment efforts included proactive invitation letters mailed to 34533 likely smokers and reactive population-level study advertisements targeted to all health plan members (> 560000 adults, including an estimated 98000 smokers across both health care organizations).
Results
An estimated 1.6% and 2.5% of adult smokers from each health care organization enrolled in Project Quit. Among likely smokers who received proactive study invitations, 7% visited the Project Quit website (n = 2260) and 4% (n = 1273) were eligible and enrolled. Response rates were similar across sites, despite using different sources to assemble the invitation mailing list. Proactive individual-level recruitment was more effective than other forms of recruitment, accounting for 69% of website visitors and 68% of enrollees.
Conclusions
Smokers were interested in receiving online smoking cessation support, even though they had access to other forms of treatment through their health insurance. Uptake rates for this program were comparable to those seen when smokers are advised to quit and are referred to other forms of smoking cessation treatment. In this sample, proactive mailings were the best method for recruiting smokers to Project Quit.
doi:10.2196/jmir.8.3.e14
PMCID: PMC2018826  PMID: 16954124
Internet; tobacco dependence; nicotine dependence; smoking cessation; recruitment activities
15.  The Coordinated Clinical Studies Network: A Multidisciplinary Alliance to Facilitate Research and Improve Care 
The Permanente Journal  2005;9(4):33-35.
The NIH Roadmap is a major effort to reshape the US health research enterprise to accelerate medical discovery and to do so in such a way that actually hastens population health improvement through research. The Roadmap's ultimate goal resonates with the HMO Research Network, a consortium of integrated health care systems that uses its collective scientific capabilities to integrate research, practice, and policy for the improvement of health and health care among diverse populations. (See page 6 for abstracts from the HMO Research Network annual conference.) As such, the HMO Research Network was ideally suited to propose a new consortium project as a part of the NIH Roadmap, the Coordinated Clinical Studies Network (CCSN). The CCSN was funded in 2004 to create a path-breaking research facility that leverages several distinctive features of the HMO Research Network: the multidisciplinary scientific capabilities of its researchers; the ability to rapidly move clinical research findings into care delivery; its large, diverse patient populations; and a commitment to placing its findings in the public domain. Among the goals of the CCSN are to augment the capacity and infrastructure for conducting research, and to use considerable investments in health informatics to improve the scope and efficiency of research data collection. The NIH Roadmap is a revolutionary step toward a new paradigm for research and responds to both a compelling social need and rapid technological advances in biomedicine. The CCSN's participation in the Roadmap Initiative is a unique opportunity for researchers, clinicians, and our patients.
PMCID: PMC3396093  PMID: 22811643
16.  Effect of Interactions Among Algae on Nitrogen Fixation by Blue-Green Algae (Cyanobacteria) in Flooded Soils 
Nitrogen fixation (C2H2 reduction) by algae in flooded soil was limited by interactions within the algal community. Nitrogen fixation by either indigenous algae or Tolypothrix tenuis was reduced severalfold by a dense suspension of the green alga Nephrocytium sp. Similarly, interactions between the nitrogen-fixing alga (cyanobacterium) Aulosira 68 and natural densities of indigenous algae limited nitrogen-fixing activity in one of two soils examined. This was demonstrated by developing a variant of Aulosira 68 that was resistant to the herbicide simetryne at concentrations that prevented development of indigenous algae. More nitrogen was fixed by the resistant variant in flooded soil containing herbicide than was fixed in herbicide-free soil by either the indigenous algae or indigenous algae plus the parent strain of Aulosira. Interference from indigenous algae may hamper the development of nitrogen-fixing algae introduced into rice fields in attempts to increase biological nitrogen fixation.
PMCID: PMC243609  PMID: 16345463

Results 1-16 (16)