Engaging Patients in Decision-Making and Behavior Change to Promote Prevention.

Effectively engaging patients in their care is essential to improve health outcomes, improve satisfaction with the care experience, reduce costs, and even benefit the clinician experience. This chapter will address the topic of patient engagement directly and review the relationships between health literacy and patient engagement. While there are many ways to define patient and family engagement, this chapter will consider engagement as "patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system - direct care, organizational design and governance, and policy making - to improve health and health care [1]." We will specifically focus on the patient engagement and health literacy needs for three scenarios (1) decision-making, (2) health behavior change, and (3) chronic disease management; we will include the theoretical underpinnings of engagement, the systems required to better support patient engagement, how social determinants of health influence patient engagement, and practical examples to demonstrate approaches to better engage patients in their health and wellbeing. We will close by describing the future of patient engagement, which extends beyond the traditional domains of decision-making and self-care to describe how patient engagement can influence the design of the healthcare delivery system; local, state, and national health policies; and future research relevant to the needs and experiences of patients.

Socioeconomic and Demographic Disparities in Caregiving Intensity and Quality of Life in Informal Caregivers: A First Look at the National Study of Caregiving.

Informal caregiving is an integral component of the health care system, saving the national economy more than $522 billion annually. The current study examined how the association between caregiving intensity and caregiver quality of life varies by sociodemographic factors through a secondary analysis of the National Study of Caregiving. Generalized linear models assessed the associations among four aspects of caregiving intensity, three aspects of caregiver quality of life, and key sociodemographic factors. Compared to White individuals, Black individuals had higher levels of overall caregiving intensity (ß = 0.293, 95% confidence interval [CI] [0.140, 0.447]), number of instrumental activities of daily living performed (ß = 0.060, 95% CI [0.030, 0.090]), and hours spent caregiving per month (ß = 0.025, 95% CI [0.002, 0.049]), yet experienced significantly fewer negative impacts on quality of life. Understanding how informal caregiving affects caregiver quality of life is critical to inform public health policies and programs designed to support caregivers and protect this critical component of the U.S. health care system. [Journal of Gerontological Nursing, 43(6), 17-24.].

Perceived Barriers and Potential Strategies to Improve Self-Management Among Adults with Type 2 Diabetes: A Community-Engaged Research Approach.

OBJECTIVE: Type 2 diabetes (T2D) is a leading cause of morbidity and mortality that disproportionately affects adults living in urban areas in the USA. Our goal was to actively engage community members in research to identify strategies to improve T2D self-management in an urban community in Baltimore, MD. METHODS: We partnered with the Johns Hopkins Community Research Advisory Council to establish our stakeholder advisory board-the Diabetes Action Board (DAB). In response to input from DAB members regarding the best approaches for conducting community-centered T2D research, we conducted three 90-min focus groups of local adults living with T2D to identify ways to improve self-management. DAB members were involved in each stage of the research, including development of the protocol and materials, participant recruitment, and interpretation and dissemination of findings. RESULTS: In total, 24 adults with self-reported T2D (75 % participation rate; 79 % female) residing in the local area participated in focus groups. Participants reported that barriers within their daily home and work environments, inadequate neighborhood resources, and suboptimal healthcare quality hindered their self-management. Reported strategies that may help to improve self-management included social support from family members, providers, and community members; improved access to healthy food; and wide availability of free or low-cost T2D educational materials and classes within the local area. CONCLUSION: Our study demonstrates a successful mechanism for engaging community members in the design, implementation, and dissemination of T2D research. This research approach was beneficial for building a sustainable partnership to support future work in the local community.

MyPreventiveCare: implementation and dissemination of an interactive preventive health record in three practice-based research networks serving disadvantaged patients--a randomized cluster trial.

BACKGROUND: Evidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement. METHODS/DESIGN: We are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness. DISCUSSION: This study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02138448.

Are researcher development interventions, alone or in any combination, effective in improving researcher behavior? A systematic review.

Academic institutions funded by the Clinical and Translational Science Awards (CTSA) Program of the National Institutes of Health were challenged recently by the Institute of Medicine to expand traditional mentoring of graduate and postdoctoral scholars to include training and continuing education for faculty, professional staff, and community partners. A systematic review was conducted to determine whether researcher development interventions, alone or in any combination, are effective in improving researcher behavior. PubMed, CINAHL, and Education Research Complete databases and select journals were searched for relevant articles published from January 2000 through October 2012. A total of 3,459 papers were identified, and 114 papers were retrieved for in-depth analysis. None included randomization. Twenty-two papers reported subjects with professional degrees, interventions, and outcomes. Interventions were meetings, outreach visits, colleague mediation, audit and feedback, and multifaceted interventions. Most studies reported multifaceted interventions (68.2%), often involving mentored learning experiences, and meetings. All studies reported a change in performance, including numbers of publications or grant applications. Nine studies reported changes in competence, including writing, presentation, or analytic skills, and performance in research practice (40.9%). Even as, the quality of evidence was weak to establish causal linkages between researcher development and improved researcher behavior, nearly all the projects (81.8%) received funding from governmental agencies, professional societies, or other organizations. Those who design researcher development activities and those who evaluate the programs are challenged to develop tools and conduct studies that measure the effectiveness, costs, and sustainability of researcher development in the CTSA Program.

Internet use for prediagnosis symptom appraisal by colorectal cancer patients.

BACKGROUND: This study explored the characteristics of colorectal cancer (CRC) patients who accessed Internet-based health information as part of their symptom appraisal process prior to consulting a health care provider. METHOD: Newly diagnosed CRC patients who experienced symptoms prior to diagnosis were interviewed. Brief COPE was used to measure patient coping. Logistic and linear regressions were used to assess Internet use and appraisal delay. RESULTS: Twenty-five percent of the sample (61/242) consulted the Internet prior to visiting a health care provider. Internet use was associated with having private health insurance (odds ratio [OR] = 2.55; 95% confidence interval [CI] = 1.20-5.43) and experiencing elimination symptoms (OR = 1.43; 95% CI = 1.14-1.80) and was marginally associated with age (OR = 0.96; 95% CI = 0.93-0.99). Internet use was not related to delayed medical care seeking. CONCLUSION: Internet use did not influence decisions to seek medical care. The Internet provided a preliminary information resource for individuals who experienced embarrassing CRC symptoms, had private health insurance, and were younger.

The research mentoring relationship in family medicine: findings from the grant generating project.

BACKGROUND AND OBJECTIVES: Mentoring has been acknowledged as a critical factor in the development of family medicine academicians. Specific aims were to describe the research mentoring in family medicine from the experience of both mentors and protégés and identify characteristics that mentors and protégés associated with a successful mentoring relationship. The Grant Generating Project (GGP) Fellowship, a training and mentoring program for family medicine researchers, provided a natural opportunity to study these issues and better understand what is successful in research mentoring. METHODS: Separate mentor and protégés surveys measured perceptions about the extent of mentoring assistance, perceived relationship success, costs and benefits of the relationship, and the nature and duration of the relationship. Correlations between demographic characteristics and the mentoring relationship were also examined. RESULTS: Mentors were generally professors (78%), male (82%), with a mean age of 53 years, while protégés were assistant professors (53%) and almost evenly divided between male (51%) and female (49%) with mean age of 44 years. Both mentors and protégés describe the mentoring relationship in general to be of benefit to both mentor and protégé. Nonetheless, statistically significant differences between mentor-protégé responses were found for nine of the 20 survey items. Mentors tended to give higher values in their ratings of specific mentor-protégé relationship variables. Significant positive correlations were found between benefit, quality of the relationship, and mentoring assistance and the number of hours per month of mentor-protégé interaction, the number of mentor-protégé meetings per month, and the number of months the mentor worked with the protégé. Mentor-protégé acquaintance before the GGP fellowship was significantly correlated with cost, benefit, and mentoring assistance. CONCLUSIONS: This study shows agreement between mentor and protégé regarding the mentors' ability to promote the protégés, provide important technical skills, convey respect for the protégés, and serve as a friend and role model. Protégés tend to be more connected with their colleagues and with their profession, perhaps in part because the mentoring relationship facilitates networking opportunities provided by the mentor. In particular, excellent mentors can provide protégés with opportunities to meet other influential scholars at conferences and/or through various forms of correspondence. Such relationships can be helpful to the protégé in developing a constellation of mentoring relationships that may result in more successful research careers. Future studies should examine the relationship upon various outcomes.

Men's tobacco and alcohol use during and after pregnancy.

Men's health risk behaviors are rarely considered as a component of their partners' prenatal care. Men living with a pregnant partner completed telephone surveys at two time points, during pregnancy and postpartum, answering questions about tobacco and alcohol use behaviors and other sociodemographic variables. Men's smoking did not change significantly from pregnancy (46.9%) to postpartum (45.8%). Hazardous drinking (five or more drinks/day in a month) changed from 27.1% to 22.9%. Nonsmoking status of men was significantly related to a pregnant partner's quitting smoking during pregnancy and remaining quit at postpartum (p = .019). Household prohibitions from indoor smoking increased from 62.5% at pregnancy to 76% postpartum (p = .009). Pregnancy alone does not appear sufficient for men to quit smoking or change hazardous drinking. Continued exclusion of young men during prenatal care is a missed opportunity to address health risk behaviors and improve paternal, maternal, and family health.

Addressing the insidious health and financial burden of tobacco use in Missouri: the role of medical and public health professionals.

Despite the widespread knowledge that tobacco use causes death and debilitating disease, tobacco control efforts in Missouri remain inadequate. No other health issue combines the prevalence, lethality, and neglect of tobacco addiction. This paper discusses comprehensive tobacco-use prevention and cessation programs that could, if implemented, effectively reduce tobacco-related health problems. Successful tobacco control efforts change society by creating an environment in which nonsmoking is the norm and quitting smoking is supported. This paper concludes that it is time for medicine and public health professionals to communicate, collaborate, and assume leadership in reducing the health burden of tobacco use in Missouri.

Issues in pay for performance: the case of diabetes self-management.

Pay for performance is a concept recently on the agenda of many health care providers, administrators, insurers, and payors in their search for methods to provide the best care at the most efficient price. At the same time it promises to promote quality care by paying financial incentives to providers who perform well clinically. As the fields continue to debate this approach, the following article explores how the pay-for-performance concept may be applied to one of the most prevalent chronic illnesses: diabetes. It identifies some of the issues and problems that may be faced with diseases such as diabetes, in which outcomes rely greatly on the role of the patient in self-management. Such considerations must be taken into account in the event of the refinement and implementation of pay for performance.

Health care consumer reports: an evaluation of employer perspectives.

The proliferation of health care consumer reports (also known as "consumer guides," "report cards," and "performance reports") designed to assist consumers in making more informed health care decisions makes it vital to understand the perspective of employers who provide the vast majority of health insurance to the working population regarding the use of these reports. There is little empirical evidence on how consumer reports are used by employers to make health care purchasing decisions. This study fills that gap by surveying 154 businesses in Boone County, Missouri, regarding their evaluation of a consumer guide. The majority of employers surveyed indicate that the report will not have a direct effect on their health care purchasing decisions. However, they indicate that the reports are "positive and worthwhile" and their responses reflect a favorable view of the health care organization that developed and disseminated the report. Additionally, findings indicate that employers generally prefer consumer reports as a means to compare local health care institutions, rather than reviewing national averages to locate the same information. Report developers should take precautions to determine the intent of such reports, as they may not achieve the objective of changing employers' health care purchasing behavior.

How to reform the health care system given the experience of past failures.

There have been a number of attempts at a large-scale reform of the US health care system during the 20th century and all have failed. Problems continue to exist, however, in the organization, delivery, and financing of health care services. Under current economic conditions, the possibility for both reform and recovery is slim if at all. In this article, we discusses a realistic option to incremental reform that takes a more realistic view of the US social and economic situation of the 21st century and is more consistent with basic US values. Perhaps it is time for reformers to take such a pragmatic approach to this long-term problem.

Health care system and insurer support for smoking cessation guideline implementation.

Physician use of clinical practice guidelines (CPGs) is disappointingly low in the United States. Much emphasis historically has been placed on the individual clinician to implement use of guidelines in practice. Recently, the Public Health Service issued an updated set of smoking cessation guidelines that include recommendations not only for patients and physicians, but also for health care administrators, insurers, and purchasers. A random sample of Missouri family physicians and general internists was used to determine, for the first time empirically, whether physicians receiving external support for guideline implementation were more likely to adopt and adhere to guidelines in practice. Fewer than 20 percent of physicians receive system support consistent with the updated guideline for smoking cessation. Only 32 percent of physicians who are unaware of the guidelines receive any of the recommended external support, while nearly 60 percent of physicians who adhere to the guidelines in practice are receiving some form of external support. Thus, the fundamental issue that requires national attention is that successful guideline implementation is highly dependent on administrative supports from health care organizations and insurers.

Building research capacity in family medicine: evaluation of the Grant Generating Project.

OBJECTIVE: To evaluate the Grant Generating Project (GGP), a program designed to train and assist family medicine researchers to secure funding as part of an overall strategy to increase research capacity in family medicine. STUDY DESIGN: Cross-sectional mail survey. POPULATION: First- through fourth-year participants in the GGP program starting from 1995. Participants were faculty members of American and Canadian family medicine departments. OUTCOME MEASURED: We measured cardinal features of primary care quality including first-contact care (accessibility and utilization), longitudinality (strength of affiliation and interpersonal relationship), comprehensiveness (services offered and received), and coordination of care. RESULTS: Most (18 of 23) GGP participants completed the survey. A total of 58 grants/contracts were submitted by respondents, representing approximately US$19.3 million. Currently, 17 (29%) are pending, representing $10.8 million (including training grants). Given the current track record, $4.8 million additional grants funds could be generated. GGP strengths cited by respondents included an effort to enhance family medicine research; personal attention, guidance, motivation, and feedback from GGP faculty and mentors; development of grant-writing skills; encouragement to attend family medicine meetings; ability to meet and learn from peers; mock study section experience; and the ability to teach, mentor, and encourage others as the GGP experience did for them. Major challenges cited were a variable degree of commitment from mentors, lack of a long-term commitment to participants, and difficulty accommodating the research focus and skill level of participants. In general, most respondents regarded the GGP program as well worth the time and effort invested. CONCLUSIONS: One to 2 years after participating in the program, participants achieved a remarkable track record of grant submissions. Moreover, the GGP program has had a substantial impact on participants; many are now teaching and mentoring others in their department. If sustained, the program will greatly increase the research capacity of the discipline of family medicine.