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Health Information Seeking and Technology Use in Harlem – a Pilot Study using Community-Based Participatory Research
... Participants also questioned the need for individuals to register at all, emphasizing that the website information should be free and open to anyone. These concerns were previously established in earlier focus groups and community discussions related to this project (Khan et al., 2009;Senathirajah, Kukafka, Guptarak, & Cohall, 2006). Through the in-depth tour, we explained that registration was optional and that the website was free and open to anyone, but to participate in the social networking components, such as posting comments or adding events, registration was necessary. ...
The use of health communication extends beyond simply promoting or disseminating a particular product or proposed behavior change; it involves the systematic and strategic integration and execution of evidence-based, theory-driven, and community engagement strategies. Much like in public health intervention design based on health behavior theory, health communication seeks to encourage the target audience to make a positive behavior change through core concepts such as understanding and specifying the target audience, tailoring messages based on audience segmentation, and continually conducting evaluation of specific and overarching goals. While our first article "Development of a Culturally Relevant Consumer Health Information Website for Harlem, New York" focused on the design, development, and initial implementation of GetHealthyHarlem.org between 2004 and 2009, this article delves into the process of promoting the website to increase its use and then evaluating use among website visitors. Just as for the development of the website, we used community-based participatory research methods, health behavior theory, and health communication strategies to systemically develop and execute a health communication plan with the goals of increasing awareness of GetHealthyHarlem.org in Harlem, driving online traffic, and having the community recognize it as a respected community resource dedicated to improving health in Harlem.
© 2015 Society for Public Health Education.
... Although there are currently no published studies reporting numbers of minority survivors seeking online survivor stories, there is considerable evidence that minority groups want and need better health information and often turn to the Internet to find it. The Internet is an important source of health information for African Americans and other minority groups, including patients diagnosed with cancer [55,56,58,59]. Yet cancer survivors as a group-including African Americans and Hispanics-are more likely than healthy adults to report wanting more information, having difficulty finding desired information, feeling frustrated during their search for information, and finding the information too hard to understand [57]. ...
The rapid growth of eHealth could have the unintended effect of deepening health disparities between population subgroups. Most concerns to date have focused on population differences in access to technology, but differences may also exist in the appropriateness of online health content for diverse populations.
This paper reports findings from the first descriptive study of online cancer survivor stories by race and ethnicity of the survivor.
Using the five highest-rated Internet search engines and a set of search terms that a layperson would use to find cancer survivor stories online, we identified 3738 distinct sites. Of these, 106 met study criteria and contained 7995 total stories, including 1670 with an accompanying photo or video image of the survivor. Characteristics of both websites and survivor stories were coded.
All racial minority groups combined accounted for 9.8% of online cancer survivor stories, despite making up at least 16.3% of prevalent cancer cases. Also notably underrepresented were stories from people of Hispanic ethnicity (4.1%), men (35.7%), survivors of colon cancer (3.5%), and older adults.
Because racial/ethnic minority cancer survivors are underrepresented in survivor stories available online, it is unlikely that this eHealth resource in its current form will help eliminate the disproportionate burden of cancer experienced by these groups.
Racial and ethnic healthcare disparities remain after differences in income, access, and insurance status have been considered, partly because of the healthcare delivery system’s failure to respond to cultural differences. The Institute of Medicine has called for the development and deployment of culturally appropriate healthcare services to mitigate these disparities. This complex problem of determining how to address the cultural components of racial and ethnic healthcare disparities is an example of what Russell Ackoff terms “messes.” Given consumer health information technology (IT)’s increasing role in patients’ self-care and self-management, one potential solution lies in designing consumer health IT that is culturally-informed. Although both the healthcare informatics community and the engineering design community have begun to seriously consider the role of culture in design to enhance usability, much work remains. Unfortunately, creating culturally-informed consumer health IT can seem daunting, limiting designers’ efforts. We propose the Culturally-Informed Design Framework as a guide for designers of consumer health IT. Designers may use this framework to conceptualize four dimensions of a consumer health IT – technology platform, functionality, content, user interface—in which design choices should be informed by a deep understanding of the users’ culture.
A new model of health care is emerging in which individuals can take charge of their health by connecting to online communities and social networks for personalized support and collective knowledge. Web 2.0 technologies expand the traditional notion of online support groups into a broad and evolving range of informational, emotional, as well as community-based concepts of support. In order to apply these technologies to patient-centered care, it is necessary to incorporate more inclusive conceptual frameworks of social support and community-based research methodologies. This paper introduces a conceptualization of online social support, reviews current challenges in online support research, and outlines six recommendations for the design, evaluation, and implementation of social support in online communities, networks, and groups. The six recommendations are illustrated by CanConnect, an online community for cancer survivors in Middle Tennessee. These recommendations address the interdependencies between online and real-world support and emphasize an inclusive framework of interpersonal and community-based support. The applications of these six recommendations are illustrated through a discussion of online support for cancer survivors.
Interrater agreement in qualitative research is rarely quantified. We present a new method for assessing interrater agreement in the coding of focus group transcripts, based on vector space methods. We also demonstrate similarities between this vector method and two previously published interrater agreement methods. Using these methods, we showed that interrater agreement for the qualitative data was quite low, attributable in part to the subjective nature of the codes and in part to the very large number of possible codes. These methods of assessing interrater agreement have the potential to be useful in determining and improving reliability of qualitative codings.
Innovations in health information technology have ushered in a new era of health care. The use of emerging information and communication technology to improve or enable health and health care is the central focus of consumer health informatics (CHI). Traditionally, CHI interventions to promote health and well-being have targeted the individual or family. Advances in genomic health and the emergence of public health informatics call for broadening the scope of CHI. The authors discuss CHI from the point-of-view of the consumer (e.g., from individuals to policy makers) and the level of health data from the subcellular (e.g., genetic or protein structures) to population (e.g., geographically-referenced information).
This report presents data on computer access, Internet use, and factors associated with health information seeking on the Internet among a sample of youths aged 15 to 30 years in New York City. Findings from street intercept surveys indicate substantial computer access at home (62%) and frequent (everyday or a few times a week) Internet use (66%). Fifty-five percent of the sample reported seeking health information on the Internet, which was associated with positive beliefs about getting a health checkup and frequent Internet use.
Ethical review of community based participatory research (CBPR) has been indentified as a significant barrier to the conduct of these studies. In particular, criticism has focused on the traditional human subjects protection paradigm, which requires Institutional Review Board (IRB) (or equivalent) review of each protocol to ensure the ethical treatment of individual subjects.
This presentation will discuss whether the IRB model is appropriately tailored for the ethical review of CBPR. In particular, are the goals and institutional structures associated with IRB review consistent with identification of and protection from group harms? The presentation will begin with a brief discussion of the ethical and regulatory framework in which the IRB is situated, with the aim of exploring what these entities are designed to accomplish. This will be followed by a description of the potential ethical risks associated with CBPR, including group harms, and an analysis of how well these risks can be addressed by IRBs as they are currently constituted.
The presentation will lay out arguments for and against IRB involvement in review of CBPR, and will explore some alternative proposals designed to create a better system for ethical review of these studies, such as community consent. Examples will be drawn from the presenter's experience working with the National Human Genome Research Institute (NHGRI) and the National Institute of Allergy and Infectious Disease (NIAID) IRBs.
In recent decades mortality rates have declined for both white and nonwhite Americans, but national averages obscure the extremely high mortality rates in many inner-city communities. Using data from the 1980 census and from death certificates in 1979, 1980, and 1981, we examined mortality rates in New York City's Central Harlem health district, where 96 percent of the inhabitants are black and 41 percent live below the poverty line. For Harlem, the age-adjusted rate of mortality from all causes was the highest in New York City, more than double that of U.S. whites and 50 percent higher than that of U.S. blacks. Almost all the excess mortality was among those less than 65 years old. With rates for the white population as the basis for comparison, the standardized (adjusted for age) mortality ratios (SMRs) for deaths under the age of 65 in Harlem were 2.91 for male residents and 2.70 for female residents. The highest ratios were for women 25 to 34 years old (SMR, 6.13) and men 35 to 44 years old (SMR, 5.98). The chief causes of this excess mortality were cardiovascular disease (23.5 percent of the excess deaths; SMR, 2.23), cirrhosis (17.9 percent; SMR, 10.5), homicide (14.9 percent; SMR, 14.2), and neoplasms (12.6 percent; SMR, 1.77). Survival analysis showed that black men in Harlem were less likely to reach the age of 65 than men in Bangladesh. Of the 353 health areas in New York, 54 (with a total population of 650,000) had mortality rates for persons under 65 years old that were at lest twice the expected rate. All but one of these areas of high mortality were predominantly black or Hispanic. We conclude that Harlem and probably other inner-city areas with largely black populations have extremely high mortality rates that justify special consideration analogous to that given to natural-disaster areas.
The "truth" campaign was created to change youth attitudes about tobacco and to reduce teen tobacco use throughout Florida by using youth-driven advertising, public relations, and advocacy. Results of the campaign include a 92 percent brand awareness rate among teens, a 15 percent rise in teens who agree with key attitudinal statements about smoking, a 19.4 percent decline in smoking among middle school students, and a 8.0 percent decline among high school students. States committed to results-oriented youth anti-tobacco campaigns should look to Florida's "truth" campaign as a model that effectively places youth at the helm of anti-tobacco efforts.
The prevalence of asthma has increased over the past two decades; if this trend persists over the next two decades, the number of individuals with asthma in the United States will double by 2020, affecting 29 million Americans. Many of these individuals will be adults. Recent community-based participatory research in Harlem has focused on children with asthma, but little is known about the prevalence and burden of asthma among adults. We conducted a population-based probability sample of Central Harlem adults 18-65 years of age from 1992 to 1994. Asthma was one of three ambulatory care-sensitive conditions surveyed. We used an additional set of questions regarding asthma management and burden for those respondents who reported they had asthma. The prevalence of self-reported asthma was 14% in this population-based sample of Central Harlem adults. Respondents with asthma reported remarkably high rates of emergency department (ED) visits for asthma, but women were more likely than men to report two or more ED visits in the year prior to interview (38% vs. 18%). Women with asthma were also more likely than men with asthma to report activity restrictions because of asthma (61% vs. 26%). The burden of asthma among adults in Central Harlem is considerable. We urgently need comprehensive health approaches to address the high prevalence of health risks related to multiple chronic diseases, notably smoking and obesity. Key priorities are to determine which community education, prevention, and promotion programs are most effective and will best serve Harlem adults.
District to Seek Wireless Internet That Aids Poor
- Arshad Mohammed
Arshad Mohammed. District to Seek Wireless Internet That
Aids Poor. The Washington Post, 2006; Mar 9, Page D01.
http://www.washingtonpost.com/wpdyn/content/article/2006/03/08/AR2006030802362.html Accessed
3/13/06.
Successful Models of Community-Based Participatory Research Report of meeting sponsored by National Institute of
- Ro Fallon
- Fl Tyson
- A Dearry
Fallon, RO., Tyson FL, Dearry A. Successful Models of
Community-Based Participatory Research. Report of meeting
sponsored by National Institute of Environmental Health Sciences
(NIEHS), March 29-31, 2000.
http://www.niehs.nih.gov/translat/cbr-final.pdf. Accessed March
14, 2006.
probability of survival to age 65 for males in Harlem was 60%; probability of males in Bangladesh surviving to age 65 is 64%
11. 1999-2001 probability of survival to age 65 for males in
Harlem was 60%; probability of males in Bangladesh surviving to
age 65 is 64%. NYC Dept. of Health statistics.