Wendy F. Cohn

A user-centered model for web site design: needs assessment, user interface design, and rapid prototyping.

As the Internet continues to grow as a delivery medium for health information, the design of effective Web sites becomes increasingly important. In this paper, the authors provide an overview of one effective model for Web site design, a user-centered process that includes techniques for needs assessment, goal/task analysis, user interface design, and rapid prototyping. They detail how this approach was employed to design a family health history Web site, Health Heritage . This Web site helps patients record and maintain their family health histories in a secure, confidential manner. It also supports primary care physicians through analysis of health histories, identification of potential risks, and provision of health care recommendations. Visual examples of the design process are provided to show how the use of this model resulted in an easy-to-use Web site that is likely to meet user needs. The model is effective across diverse content arenas and is appropriate for applications in varied media.

Health Heritage© a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity.

A detailed family health history is currently the most potentially useful tool for diagnosis and risk assessment in clinical genetics. We developed and evaluated the usability and analytic validity of a patient-driven web-based family health history collection and analysis tool. Health Heritage© guides users through the collection of their family health history by relative, generates a pedigree, completes risk assessment, stratification, and recommendations for 89 conditions. We compared the performance of Health Heritage to that of Usual Care using a nonrandomized cohort trial of 109 volunteers. We contrasted the completeness and sensitivity of family health history collection and risk assessments derived from Health Heritage and Usual Care to those obtained by genetic counselors and genetic assessment teams. Nearly half (42%) of the Health Heritage participants reported discovery of health risks; 63% found the information easy to understand and 56% indicated it would change their health behavior. Health Heritage consistently outperformed Usual Care in the completeness and accuracy of family health history collection, identifying 60% of the elevated risk conditions specified by the genetic team versus 24% identified by Usual Care. Health Heritage also had greater sensitivity than Usual Care when comparing the identification of risks. These results suggest a strong role for automated family health history collection and risk assessment and underscore the potential of these data to serve as the foundation for comprehensive, cost-effective personalized genomic medicine.

Health Disparities Between Appalachian and Non-Appalachian Counties in Virginia USA

The examination of health disparities among people within Appalachian counties compared to people living in other counties is needed to find ways to strategically target improvements in community health in the United States of America (USA). Methods: A telephone survey of a random sample of adults living in households within communities of all counties of the state of Virginia (VA) in the USA was conducted. Findings: Health status was poorer among those in communities within Appalachian counties in VA and health insurance did not make a difference. Health perception was significantly worse in residents within communities in Appalachian counties compared to non-Appalachian community residents (30.5 vs. 17.4% rated their health status as poor/fair), and was worse even among those with no chronic diseases. Within communities in Appalachian counties, black residents report significantly better health perception than do white residents. Conclusion: Residents living in communities in Appalachian counties in VA are not receiving adequate health care, even among those with health insurance. More research with a larger ethnic minority sample is needed to investigate the racial/ethnic disparities in self-reported health and health care utilization within communities.

Challenges to accrual predictions to phase III cancer clinical trials: a survey of study chairs and lead statisticians of 248 NCI-sponsored trials.

Background Research on barriers to accrual has typically emphasized factors influencing participation after trial activation. Purpose We sought to identify factors influencing trial design and accrual predictions prior to trial activation associated with sufficient accrual. Methods A 30-question web-based survey was sent to the study chair and lead statistician for all 248 phase III trials open in 1993–2002 by five Clinical Trials Cooperative Groups. Questions addressed prior trial experience, trial design elements, accrual predictions, and perceived accrual influences. Accrual sufficiency categorization was derived from Clinical Trials Cooperative Group records: sufficient accrual included trials closed with complete accrual or at interim analysis, insufficient accrual included trials closed with inadequate accrual. Responses were analyzed by respondent role (study chair/lead statistician) and accrual sufficiency. Results Three hundred and nine eligible responses were included (response rate, 63%; lead statisticians, 81%; and study chairs, 45%), representing trials with sufficient (63%) and insufficient accruals (37%). Study chair seniority or lead statistician experience was not linked to accrual sufficiency. Literature review, study chairs personal experience, and expert opinion within Clinical Trials Cooperative Group most commonly influenced control arm selection. Clinical Trials Cooperative Group experience most influenced accrual predictions. These influences were not associated with accrual sufficiency. Among respondents citing accrual difficulties (41%), factors negatively influencing accrual were not consistently identified. Respondents credited three factors with positively influencing accrual: clinical relevance of study, lack of competing trials, and protocol paralleling normal practice. Limitations Perceptions of lead statisticians and study chairs may not accurately reflect accrual barriers encountered by participating physicians or patients. Survey responses may be subject to recall bias. Conclusion Consistent factors explaining poor accrual were not identified, suggesting reasons for poor accrual are not well understood and warrant further study. Alternate strategies for accrual prediction are needed since Clinical Trials Cooperative Group experience is linked to successful and unsuccessful accrual.

“Are You at Risk for Hereditary Breast Cancer?”: Development of a Personal Risk Assessment Tool for Hereditary Breast and Ovarian Cancer

Identification of risk for the hereditary breast and ovarian cancer syndrome (HBOC) is important, as research has demonstrated the benefits of risk-reducing interventions for women with or at risk for this disorder. Knowledge among women regarding risk factors for hereditary breast cancer and the existence of cancer genetics services appears limited. The goal of this project was to develop a tool to broaden women’s awareness regarding their potential risk for HBOC. A formal instructional design process was used to develop a brochure to facilitate recognition of HBOC risk among women attending a no-cost breast and cervical cancer screening clinic. Brochure development was guided by gathering feedback from potential users early and often. The resulting brochure included four parts: (1) a brief description of the impact of hereditary breast cancer risk on one’s health; (2) a personal and family history collection table; (3) a series of questions enabling the user to self-assess HBOC risk; (4) a list of resources for women at risk for HBOC. User feedback indicated that the brochure was easy to use. The project demonstrated that women can self-evaluate their risk for HBOC. Future work will evaluate this tool among a broader population of women.

Content Analysis and User Characteristics of a Smartphone-Based Online Support Group for People Living with HIV.

BACKGROUND Although there is growing interest in mobile applications and online support groups to enhance chronic disease self-management, little is known about their potential impact for people living with HIV (PLWH). INTRODUCTION We developed an innovative online support group delivered through a community message board (CMB) within a clinic-affiliated smartphone application Positive Links (PL). We analyzed characteristics of posters and nonposters to the CMB and evaluated content posted to the CMB. MATERIALS AND METHODS For this study, 38 HIV-infected patients received cell phones with the PL application that included the opportunity to interact with other users on a CMB. Logistic regressions investigated associations between participant characteristics and posting. CMB messages were downloaded and analyzed qualitatively. RESULTS 24 participants posted to the CMB; 14 did not. Participants had lower odds of posting if they were white (p = 0.028) and had private insurance (p = 0.003). Participants had higher odds of posting if they had unsuppressed viral loads (p = 0.034). Of the 840 CMB messages over 8 months, 62% had psychosocial content, followed by community chat (29%), and biomedical content (10%). DISCUSSION Psychosocial content was most prevalent on this CMB, in contrast to other online forums dominated by informational content. Participants who posted expressed support for each other, appreciation for the community, and a perception that the app played a positive role in their HIV self-management. CONCLUSIONS This CMB on a clinic-affiliated mobile application may reach vulnerable populations, including racial/ethnic minorities and those of lower socioeconomic status, and provide psychosocial support to PLWH.

Perinatologists and Advanced Practice Nurses Collaborate to Provide High‐Risk Prenatal Care in Rural Virginia Communities

Poster Presentation Purpose for the Program The specific intent was to assess the effect of a telemedicine‐based high‐risk prenatal clinic on maternal‐child health outcomes for low‐income women in rural communities. Proposed Change Adequate and early access to risk‐appropriate prenatal care can reduce the incidence of adverse outcomes. Limited access disproportionately affects women of low socioeconomic status and with limited English proficiency in rural communities. Distance and costs associated with frequent travel and the limited number of perinatologists are barriers to high‐risk care. Telemedicine can reduce barriers through collaboration of perinatologists and advanced practice nurses. Telemedicine has shown favorable results in a variety of clinical disciplines. Prenatal care is a relative newcomer to the spectrum of health care provided via telemedicine. Implementation, Outcomes, and Evaluation Collaborative high‐risk obstetric (OB) telemedicine clinics were implemented in five rural locations between 2009 and 2013. Local clinics serving the targeted population were solicited as partners. Hands‐on prenatal care and examinations at the local site were provided by nurse practitioners. Video telemedicine visits were in real time with the patient, local practitioner, and remote perinatologist. The telemedicine clinics served 374 patients. With Institutional Review Board (IRB) approval, charts were reviewed to compare patient access measures and pregnancy outcomes before and after initiation of telemedicine. The comparison group consisted of 181 patients. Demographic, patient access, and pregnancy outcome data for women referred before and after the initiation of the telemedicine clinics were compared using two‐sample t test and chi‐square test. Women who received care before telemedicine had a higher rate of missing one or more prenatal visits compared with the telemedicine group (57.1% vs. 21.3%, p = .000). The overall missed visit rate decreased from 0.71% to 0.53% per patient ( p = .086). There was no difference in the groups for gestational age at first visit (13.6 vs. 14.0 weeks of gestation). Deliveries after 37 weeks of gestation were similar (84% pretelemedicine vs. 83% telemedicine). The telemedicine group had a higher mean birth weight (3,226 vs. 3,137 g, p = not significant). There was no difference in the neonatal intensive care unit (NICU) admission rate (12.0% vs. 10.8%); mean NICU days were reduced in the telemedicine group (22.11–13.42, p Implications for Nursing Practice Collaborative care through telemedicine is an effective method for providing high‐risk prenatal care to women who live in rural communities. When compared with traditional care, telemedicine is associated with improved access to care and similar rates of important outcomes.

The Association of Mammographic Density and Molecular Breast Cancer Subtype

Background: Mammographic density (MD) is associated with increased breast cancer risk, yet limited data exist on an association between MD and breast cancer molecular subtypes. Methods: Women ages 18 years and older with breast cancer and available mammograms between 2003 and 2012 were enrolled in a larger study on MD. MD was classified by the Breast Imaging Reporting and Data System (BI-RADS) classification and by volumetric breast percent density (Volpara Solutions). Subtype was assigned by hormone receptor status, tumor grade, and mitotic score (MS). Subtypes included: Luminal-A (ER/PR+ and grade = 1; ER/PR+ and grade = 2 and MS = 1; ER+/PR− and grade = 1; n = 233); Luminal-B (ER+ and grade = 3 or MS = 3; ER+/PR− and grade = 2; ER/PR+ and grade = 2 and MS = 2; n = 79); Her-2-neu+ (H2P; n = 59); triple-negative (ER/PR−, Her-2−; n = 86). Precancer factors including age, race, body mass index (kg/m2), family history of breast cancer, and history of lobular carcinoma in situ were analyzed. Results: A total of 604 patients had invasive cancer; 457 had sufficient information for analysis. Women with H2P tumors were younger (P = 0.011) and had the highest volumetric percent density (P = 0.002) among subgroups. Multinomial logistic regression (LA = reference) demonstrated that although quantitative MD does not significantly differentiate between all subtypes (P = 0.123), the association between MD and H2P tumors is significant (OR = 1.06; confidence interval, 1.01–1.12). This association was not seen using BI-RADS classification in bivariable analysis but was statistically significant (P = 0.047) when controlling for other precancer factors. Conclusions: Increased MD is more strongly associated with H2P tumors when compared with LA. Impact: Delineating risk factors specific to breast cancer subtype may promote development of individualized risk prediction models and screening strategies. Cancer Epidemiol Biomarkers Prev; 26(10); 1487–92. ©2017 AACR.

Tailored Educational Approaches for Consumer Health: A Model to Address Health Promotion in an Era of Personalized Medicine:

Purpose: To develop a model, based on market segmentation, to improve the quality and efficiency of health promotion materials and programs. Design: Market segmentation to create segments (groups) based on a cross-sectional questionnaire measuring individual characteristics and preferences for health information. Educational and delivery recommendations developed for each group. Setting: General population of adults in Virginia. Participants: Random sample of 1201 Virginia residents. Respondents are representative of the general population with the exception of older age. Measures: Multiple factors known to impact health promotion including health status, health system utilization, health literacy, Internet use, learning styles, and preferences. Analysis: Cluster analysis and discriminate analysis to create and validate segments. Common sized means to compare factors across segments. Results: Developed educational and delivery recommendations matched to the 8 distinct segments. For example, the “health challenged and hard to reach” are older, lower literacy, and not likely to seek out health information. Their educational and delivery recommendations include a sixth-grade reading level, delivery through a provider, and using a “push” strategy. Conclusion: This model addresses a need to improve the efficiency and quality of health promotion efforts in an era of personalized medicine. It demonstrates that there are distinct groups with clearly defined educational and delivery recommendations. Health promotion professionals can consider Tailored Educational Approaches for Consumer Health to develop and deliver tailored materials to encourage behavior change.

Doctors' perceptions of information utility in neonatal intensive care

unperceived needs. Team approaches to learning can represent ways of assimilating and translating information into clinical practice. In order to do so, doctors need to feel comfortable relying on others and with the idea of being a student. Why the idea was necessary The ‘Weakest Link’, the first programme of its kind in Canada, was initially developed by Merck Frosst Canada as an educational tool for general practitioners to spice up their CME programmes. It was so well received that the University of Alberta and Merck Frosst decided to measure its impact on the specialist audience at a national specialty society conference. We felt this intervention was necessary to breathe new life into the traditional CME format and to observe whether a competitive, evidence-based, game-style CME tool would help doctors acknowledge their hitherto unperceived needs and perhaps alter their selfperception of always ‘needing to be right’. What was done A time-limited, competitive intervention was created using evidence-based true or false questions that were constructed by a scientific committee in response to a needs assessment conducted with 100 Canadian rheumatologists. In fact, the questions were intentionally constructed to facilitate controversy and provoke reflection. A total of 70 participants sat in teams and team consensus was necessary to cast the answer. The teams were scored and the team with the most correct answers was announced as the strongest link, while the team with the least correct answers was decreed the weakest link. The programme was evaluated and the major themes were extracted. Evaluation of results and impact The programme design elements embodied controversy and created healthy competition. We hypothesise that the controversial nature of the questions that resulted in disagreement acted as a trigger as doctors unexpectedly realised that they did not know all the correct answers. This led to debate within their teams and with the content experts. Some doctors expressed disagreement with the answers, even when the latter were supported by the evidence. Ultimately, their unperceived learning needs were revealed through exposure to a stimulating learning environment. This is a strong feature of this programme’s success. The programme evoked enthusiasm among participants, transforming them into learners, although for some this was uncomfortable. Furthermore, we hypothesise that the disagreement and controversy ultimately led to improved learning and retention. It may be that the combination of wanting to be right and needing to be right is what ultimately turns all of us into learners. Correspondence: Sherry A Robertson BSc, Health Education Manager, Merck Frosst Canada Ltd, #57, 27 Silversprings Drive NW, Calgary, Alberta T3B 4N3, Canada. Tel: 00 1 403 239 7869; Fax: 00 1 403 247 6494; E-mail: sherry_robertson@merck.com