Health-related Research Studies Research Articles

Abstract 1003: Contact registry for health-related cancer research: Promoting inclusion in research

Abstract Contact Registries can serve as key tools in connecting community members to cancer health research opportunities. Members of underrepresented groups who enroll in a contact registry can choose to participate in studies they find interesting, provided they are an ideal candidate for participation. However, limited information exists regarding the types of studies underrepresented groups would want to participate in. The Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center Community Outreach Core (COC) created a contact registry of community members self-identifying as Black/African American (B/AA) and/or Hispanic/Latinx (H/L) persons who are interested in learning about future research studies conducted at CaRE2 institutions. The CaRE2 Contact Registry was implemented in August 2022 by the CaRE2 COC, one of the six (6) key cores within the CaRE2 Center. COC’s primary objective is to increase the number of persons participating in cancer research, which ultimately produces findings more applicable to the broader, diverse population of B/AA and H/L communities in both Florida and California. Our study team promotes the registry at local community events and through our center’s social media accounts and website (https://care2healthequitycenter.org/the-care2-contact-registry/). Recruitment consists of both in-person and online methods provided in both Spanish and English with data stored on REDCap, an online data repository system. For in-person enrollment, a consent/authorization form and OPT-IN survey are completed; meanwhile, our online recruitment requires additional screening to ensure eligibility. Eligibility requires that the person resides in 1) either California or Florida, 2) be 18+ years old, and 3) identify as B/AA or H/L. In addition to collecting contact and demographic information, participants can choose their research study interests. For example, they can choose to participate in surveys, community forums, focus groups, a cancer advocacy training program, and/or to provide a hair, saliva, or blood sample. A $10.00 gift card, either in a physical or electronic format, was provided to each confirmed enrollee. As of November 13, 2023, 1,269 persons have enrolled, representing 63% of the 2,000 enrollment goal. While 92% of registry enrollees are willing to participate in health research involving surveys, only 20% are willing to participate in health research studies requiring saliva (23%), hair (22%), or blood (20%) donations. In conclusion, registry enrollees, regardless of race or ethnicity, have a high interest in participating in studies involving completing surveys or attending focus groups. However, efforts must continue to increase participation willingness for research involving biospecimen donation. Future efforts will also include connecting enrollees to cancer health-related research studies of their interest. Citation Format: Fern Webb, IIeana Guzman, Brooke Hensel, Eduardo Ibarra, Carolina Aristizabal, John Luque, Rosa Barahona, Diana Wilkie, Mariana C. Stern, Lourdes Baezconde-Garbanati, Sandra Suther. Contact registry for health-related cancer research: Promoting inclusion in research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 1003.

Community engagement strategies for population health research with culturally diverse adults

The purpose of this report is to describe the community engagement research (CEnR) strategies used to implement the Florida Statewide Registry for Aging Studies (FSRAS), a tri-institutional research project conducted during the height of the COVID-19 pandemic. We describe the CEnR strategies used to enroll adults aged > 25 years old self-identifying as African American (AA), Caribbean (CN), or Hispanic/Latinx (H/L) into FSRAS health research studies. The second goal is to report the number of AA, CN, and H/L adults involved in FSRAS and discuss the implications of CEnR strategies used throughout this research. More than 1600 adults aged 25 years or older participated in FSRAS health-related research activities or studies. Specifically, 25 community leaders from throughout Florida served on the FL-SAGE Council, 587 AA, CN, and H/L adults aged > 25 years old participated in listening sessions and completed surveys exploring intergenerational influence, 292 AA, CN, and H/L adults participated in marketing research, and at least 702 adults have enrolled in AgeWell, FSRAS’s health registry for persons interested in healthy aging research. Implications are researchers should continue using several CEnR strategies including technology and social media. Examining how the foundational principles of trust and authenticity are maintained when using CEnR strategies in virtual settings is warranted. Research implications are that simultaneously using CEnR strategies to recruit and enroll underrepresented populations into research is most effective although further research is needed to identify which CEnR strategy is most effective for enrolling AA, CN, and H/L older adults in aging research.

Barriers to and Recommendations for Research Recruitment of Individuals Affected by Serious Illness

Researchers are encountering increasing challenges in recruiting participants for healthcare research. We conducted semi-structured individual interviews to identify participant barriers to research and recommendations for overcoming these challenges. We recruited 17 patients and eight caregivers who were approached to participate in a randomized control trial. We also recruited 31 primary care physicians. Using grounded theory, three researchers independently coded the transcripts and then met to compare codes and reconcile discrepancies. Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization and repetitive questions. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included various recruitment techniques. Physician recommendations were related to incentives. Although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a barrier to research involvement.

Patient and physician perspectives on engaging in palliative and healthcare trials: a qualitative descriptive study

BackgroundResearchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies.MethodsBetween October 2019 to July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants’ responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated.ResultsThemes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers’ offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events.ConclusionsFindings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement.

Using Vignette-Based Methodology to Examine Study Recruitment in Older African American Adults: A Methods Paper.

This study's objective was to assess which caring recruitment behaviors correlate with the successful recruitment of older African-American adults-a two-step cross-sectional design employing a vignette-based survey methodology. Kristen Swanson's middle-range theory of caring was used to guide the examination of African-American adults' (65 years of age and older) perceptions of research-study-recruiter recruitment behaviors. This study's main findings are twofold: Step1: Seven of ten invited experts identified major revisions of the two core vignettes, written at an eighth-grade reading level and high school comprehension. Step 2: A 51% response rate yielded findings that this methodology successfully captured older African-American adults' perception of research study recruiters' behavioral characteristics during the recruitment process. Older African-Americans who received the hypothetical caring vignette were twice as likely to indicate their willingness to enroll in a research study with a high commitment (i.e., brain donation) compared to their counterparts who received the hypothetical uncaring recruitment scenario. Vignette-based survey methodology holds promise as a tool for informing the recruitment of older African-American adults and other minorities into federally funded health-related research studies.

Correlates of attendance at community engagement meetings held in advance of bio-behavioral research studies: A longitudinal, sociocentric social network study in rural Uganda.

Community engagement is central to the conduct of health-related research studies as a way to determine priorities, inform study design and implementation, increase recruitment and retention, build relationships, and ensure that research meets the goals of the community. Community sensitization meetings, a form of community engagement, are often held prior to the initiation of research studies to provide information about upcoming study activities and resolve concerns in consultation with potential participants. This study estimated demographic, health, economic, and social network correlates of attendance at community sensitization meetings held in advance of a whole-population, combined behavioral, and biomedical research study in rural Uganda. Research assistants collected survey data from 1,630 adults participating in an ongoing sociocentric social network cohort study conducted in a rural region of southwestern Uganda. These community survey data, collected between 2016 and 2018, were linked to attendance logs from community sensitization meetings held in 2018 and 2019 before the subsequent community survey and community health fair. Of all participants, 264 (16%) attended a community sensitization meeting before the community survey, 464 (28%) attended a meeting before the community health fair, 558 (34%) attended a meeting before either study activity (survey or health fair), and 170 (10%) attended a meeting before both study activities (survey and health fair). Using multivariable Poisson regression models, we estimated correlates of attendance at community sensitization meetings. Attendance was more likely among study participants who were women (adjusted relative risk [ARR]health fair = 1.71, 95% confidence interval [CI], 1.32 to 2.21, p < 0.001), older age (ARRsurvey = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001; ARRhealth fair = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001), married (ARRsurvey = 1.74, 95% CI, 1.29 to 2.35, p < 0.001; ARRhealth fair = 1.41, 95% CI, 1.13 to 1.76, p = 0.002), and members of more community groups (ARRsurvey = 1.26 per group, 95% CI, 1.10 to 1.44, p = 0.001; ARRhealth fair = 1.26 per group, 95% CI, 1.12 to 1.43, p < 0.001). Attendance was less likely among study participants who lived farther from meeting locations (ARRsurvey = 0.54 per kilometer, 95% CI, 0.30 to 0.97, p = 0.041; ARRhealth fair = 0.57 per kilometer, 95% CI, 0.38 to 0.86, p = 0.007). Leveraging the cohort's sociocentric design, social network analyses suggested that information conveyed during community sensitization meetings could reach a broader group of potential study participants through attendees' social network and household connections. Study limitations include lack of detailed data on reasons for attendance/nonattendance at community sensitization meetings; achieving a representative sample of community members was not an explicit aim of the study; and generalizability may not extend beyond this study setting. In this longitudinal, sociocentric social network study conducted in rural Uganda, we observed that older age, female sex, being married, membership in more community groups, and geographical proximity to meeting locations were correlated with attendance at community sensitization meetings held in advance of bio-behavioral research activities. Information conveyed during meetings could have reached a broader portion of the population through attendees' social network and household connections. To ensure broader input and potentially increase participation in health-related research studies, the dissemination of research-related information through community sensitization meetings may need to target members of underrepresented groups.

The modest hormonal effects of soy isoflavones: What do we really know? A narrative review

Background: Soybean is a species of legume native to Southeast Asia. It is widely grown as it is widely used in producing foods and food additives. The categories of soy protein differ according to their production methods, which ranges from isolated to concentrated and textured soy protein. The direct effect of soy bean on health and its mechanism of work are yet unclear and is still a controversial issue that needs to be investigated. Aim: To provide an overview of existing soybean and health-related research studies and to identify the positive and negative effects if found especially for heart diseases and cancers. Materials and Methods: A search of periodical literature by the author involving dietary therapy and soybean was carried out. Items were identified initially through health-oriented indexing services such as Medline, Health STAR, and Cinahl, looking up for articles published in English language, from 2010 to 2020. Keywords included “Isoflavones,” “soybean,” “cancer,” “Tofu,” and “heart disease.”Results: Researches are still controversial, some studies acknowledged the soybean product’s efficacy in preventing diseases such as heart diseases and cancers, while others found no or negative effects on health. Conclusion: The risk/benefit status of soy products as beneficial supplements continues to be controversial. To conclude, it can be confirmed that 12–25 gm of soy with 75 gm of isoflavones daily (2–4 servings of soy foods per day) can improve the estrogen level along with lipid profile and offer benefits to the cardiovascular system and estrogen deficit symptoms. Most populations should not exceed the recommended amount and the effectiveness of using soybeans should be matched with tolerance and compliance to reach the desirable improvements.

Crowdsourcing for Research: Perspectives From a Delphi Panel

Crowdsourcing, an open call for the public to collaborate and participate in problem solving, has been increasingly employed as a method in health-related research studies. Various reviews of the literature across different disciplines found crowdsourcing being used for data collection, processing, and analysis as well as tasks such as problem solving, data processing, surveillance/monitoring, and surveying. Studies on crowdsourcing tend to focus on its use of software, technology and online platforms, or its application for the purposes previously noted. There is need for further exploration to understand how best to use crowdsourcing for research, as there is limited guidance for researchers who are undertaking crowdsourcing for the purposes of scientific study. Numerous authors have identified gaps in research related to crowdsourcing, including a lack of decision aids to assist researchers using crowdsourcing, and best-practice guidelines. This exploratory study looks at crowdsourcing as a research method by understanding how and why it is being used, through application of a modified Delphi technique. It begins to articulate how crowdsourcing is applied in practice by researchers, and its alignment with existing research methods. The result is a conceptual framework for crowdsourcing, developed within traditional and existing research approaches as a first step toward its use in research.

Caring in the recruitment of older African American adults with chronic health disease: An integrative review.

The aim of this integrative review is to accrue a comprehensive understanding of caring behavioral characteristics in the recruitment of older African-American adults into health-related research studies centered on chronic diseases. Combined methodologies, Whittemore & Knafl and Kable, Pich & Maslin-Prothero in accordance with preferred items for systematic reviews and meta-analysis, were used to guide the data collection and to report the findings. The data were analyzed based upon recruitment categorization and Kristen Swanson's middle-range theory of caring. Ten out of 260 publications comprised the final sample. They were analyzed and then aggregated by chronic illnesses, recruitment activities, contact level, and Swanson's five caring behavioral concepts. Select cancers, diabetes, hypertension, and Alzheimer's disease were the chronic illness foci of eight publications. Cardiovascular disease and stroke were the focus of two publications. Only three studies utilized all five Swanson's caring concepts, and the frequently used concept throughout all 10 studies was enabling. Recruitment approaches employed to accrue older African-American adults into chronic illness-related research studies necessitate proactive recruitment strategies that incorporate caring behaviors. Future researchers ought to develop multi-modality recruitment strategies to improve older African-American adults' representation.

Patient and public involvement in doctoral research: Impact, resources and recommendations.

Background and aimPatient and public involvement (PPI) has potential to enhance health‐care research and is increasingly an expectation, particularly for many funding bodies. However, PPI can be tokenistic, which may limit this potential. Furthermore, few studies report PPI processes and impact, particularly in doctoral research studies, which are seldom reported in peer‐reviewed papers. The aim of this paper was to explore the impact of PPI on two health‐related doctoral research studies and identify how PPI could be used meaningfully at this level.MethodThe PPI processes included (a) involvement of two ‘Research Buddies’ who informed the research design and ensured implementation of a booklet intervention was feasible for family carers, (b) data analysis workshops with ‘Research Buddies’ to identify emerging themes from practitioner interviews, (c) public and stakeholder involvement who informed data collection tool design, and the design of an intervention to help people with obesity who attend weight loss groups.FindingsThe application of PPI enhanced both doctoral studies by assisting data analysis; problem solving and improving recruitment rates; improving the usability and appeal of data collection tools and interventions; and developing implementation strategies. Patient and public involvement was considered a rewarding experience for both researchers and PPI contributors.ConclusionThis paper demonstrates the value of PPI in doctoral research in relation to its impact on research processes, researchers and contributors. We also present recommendations on how PPI could be incorporated into future doctoral research, including resources required, planning PPI processes and involving PPI contributors in all stages of research.

Words, Camera, Music, Action: A Methodology of Digital Storytelling in a Health Care Setting

In this technological age, storytelling is moving from oral and written to digital formats, creating many methodological opportunities for researchers and practitioners. This article explores a specific genre of participatory media production, digital storytelling (DST), which could be a valuable research tool to describe, analyze, and understand the experiences of research participants. Digital stories (DS) are short movies that use images, videos, a voice-over, and various video editing techniques to share an important story from the participant’s life. In a health care setting, DS can be used as knowledge translation tools for education and advocacy, as data to be analyzed in the research process, or as a therapeutic intervention, in any combination, depending on the intent of the project. Although an increasing number of health-related research studies indicate using DST, or some variation of it, there is a glaring paucity of methodologically focused manuscripts in the health care literature. This article delineates and describes four primary phases of DST in a health care context as finding the story, telling the story, crafting the story, and sharing the story. Both the creative and technical considerations of DST facilitation are elucidated through specific examples and practical concepts. By drawing from diverse literature such as narratology, film, and psychotherapy, and exploring new creative tools and ideas to help research participants convey meaning, this article provides a starting point for qualitative researchers to explore the use of DST in their own contexts.

Association between the Risk of Low/High-Count Monoclonal B-Cell Lymphocytosis (MBL) and the Chronic Lymphocytic Leukemia (CLL) Polygenic Risk Score (PRS)

BackgroundMBL is a precursor state to CLL, with a prevalence of ~5-8% in the general population and 15-18% in CLL families. To date, 41 single nucleotide polymorphisms (SNPs) have been found to be associated with CLL. We previously showed that a PRS of the weighted average of the number of risk alleles of these SNPs is associated with CLL risk using cases and controls from the International Lymphoma Epidemiology (InterLymph) Consortium. We validated this score in an independent sample of CLL cases and controls from the Genetic Epidemiology of CLL (GEC) Consortium, a cohort of families with ≥2 members with CLL. In the CLL families we also reported an association between the PRS and MBL risk, where 93% of MBLs were low-count MBL. Here we evaluate the PRS in an independent sample ascertained from the Mayo Clinic Biobank.MethodsThe Mayo Clinic Biobank is a large-scale bio-repository of adult patients assembled to provide a wide array of health-related research studies. Biobank participants (N=2530) were screened for MBL using a highly-sensitive, 8-color (CD38, CD45, Kappa, Lambda, CD19, CD23, CD5 and CD20) flow-cytometry assay on stored cryopreserved peripheral blood mononucleotide cells. Low-count and high-count MBL were defined as those individuals who had <85% and ≥85 clonal B-cells out of total B-cells, respectively. Individuals without MBL (“controls”) were frequency matched to MBLs based on age and sex, after excluding non-Caucasian and non-interpretable flow results. Participants were genotyped using the Illumina OmniExpress array. Standard genotyping quality-control metrics were applied. We computed the PRS as previously published and categorized it by quintiles based on values previously used with InterLymph controls. The middle quintile served as the reference category. We used logistic regression to estimate odds ratios (ORs) and 95% confidence intervals (CI), adjusting for age at consent, sex, and socioeconomic status. In addition, we compared the median PRS by low-count MBL and high count MBL using the Mann-Whitney U test.ResultsWe identified 276 MBLs overall and 2109 controls; 97% (N=267) of MBLs had low-count MBL and only 3% (N=9) had high-count MBL. We then selected 844 controls frequency matched to the MBL cases on age and sex. Family history of leukemia/lymphoma was 11.3% among MBLs overall and 8.8% among controls. The median PRS was 7.88 and 7.46 (Figure) among MBLs overall and controls, respectively. The continuous PRS had a 1.75-fold increased risk for MBL overall (CI:1.5-2.1, P=2.65x10-12). Compared to the middle quintile, the highest quintile had 2.2-fold increased risk for MBL overall (CI:1.5-3.3, P=1.46x10-4) and the lowest quintile had 0.6-fold decreased risk (CI:0.4-0.96, P=0.03). The median PRS for low-count and high count MBL were 7.86 and 8.04, respectively. The continuous PRS had a 1.75-fold increased risk for low-count MBL (CI:1.5-2.1, P=4.81x10-12) and a 1.89-fold increased risk for high-count MBL (CI:0.8-4.2, P=0.13), however, the effect is not statistically significant between high-count and low-count MBL (P=0.89).ConclusionIn this independent sample, we validated our previous findings that the CLL PRS is associated with MBL risk. Although the sample size of high-count MBL was limited (N=9), there is evidence of a weak trend towards a higher PRS compared to low-count MBL and controls Larger sample size of high-count MBL is warranted in order to stratify MBL risk by low-count and high-count MBL. These results may help identify individuals at higher risk of MBL including low-count and high-count MBL, beyond the risk associated with age and family history of CLL.Figure: Polygenic risk score distribution by control and MBL status DisclosuresParikh:Janssen: Research Funding; Pharmacyclics: Honoraria, Research Funding; Gilead: Honoraria; Abbvie: Honoraria, Research Funding; AstraZeneca: Honoraria, Research Funding; MorphoSys: Research Funding. Cerhan:Nanostring: Research Funding; Celgene: Research Funding; Jannsen: Other: Scientific Advisory Board. Kay:Janssen: Membership on an entity's Board of Directors or advisory committees; Acerta: Research Funding; Infinity Pharm: Membership on an entity's Board of Directors or advisory committees; Celgene: Membership on an entity's Board of Directors or advisory committees; Agios Pharm: Membership on an entity's Board of Directors or advisory committees; Pharmacyclics: Membership on an entity's Board of Directors or advisory committees, Research Funding; Cytomx Therapeutics: Membership on an entity's Board of Directors or advisory committees; Gilead: Membership on an entity's Board of Directors or advisory committees; Tolero Pharmaceuticals: Membership on an entity's Board of Directors or advisory committees, Research Funding; Morpho-sys: Membership on an entity's Board of Directors or advisory committees. Shanafelt:Genentech: Research Funding; Pharmacyclics: Research Funding; GlaxoSmithKline: Research Funding; Jansen: Research Funding.

Spirituality and Willingness to Participate in Health-Related Research Among African Americans.

African Americans remain underrepresented in health-related research. We examined the association between spirituality using the Self-Rating Spirituality Scale (range 6-24) and self-reported willingness to participate in health-related research studies among African Americans. Covariates included gender, education level, employment status, and previous research experience. Adjusted associations were calculated with logistic regression models, with multiple imputation to account for missing data. Results from the logistic regression model show that each one-point increase in the Self-Rating Spirituality Scale was associated with a 24% increase in the odds of being very likely to participate in research (OR: 1.24, 95% CI: 1.07-1.44). Those with less than a college degree (OR: 3.59, 95% CI: 1.51-8.54), who were unemployed (OR: 2.34, 95% CI: 1.03-5.33), and had previous research experience (OR: 2.92, 95% CI: 1.22-6.99) reported increased willingness to participate. This work offers new insight for developing recruitment initiatives within African American spiritual communities.

Defining Research: The Effect of Linguistic Choices on the Intentions to Participate in Clinical Research.

Significant barriers to participant recruitment for clinical research (CR) are related to effective communication, and nurse coordinators are entrusted with being knowledge brokers between investigators and prospective participants. This prospective cohort study sought to identify linguistic choices that could inform and facilitate recruitment efforts. Healthy adults ( N = 204) were invited to join an online survey to assess the likelihood of participation in CR based on short and extended definitions of CR. Five short definitions included clinical trial, clinical study, health-related research study, community participatory study, and quality improvement study. The likelihood of participation in CR was the lowest for clinical trial and the highest for health-related research study. However, when only an extended definition was provided, those differences were not observed. A linguistic change from trial to study could lead to positive attitude toward CR and improvements in recruitment. However, ethical implications of linguistic choices should be considered.

US Military Service Members' Reasons for Deciding to Participate in Health Research.

Researchers have reported challenges in recruiting US military service members as research participants. We explored their reasons for participating. Eighteen US military service members who had participated in at least one health-related research study within the previous 3 years completed semi-structured individual interviews in person or by telephone, focused on the service members' past decisions regarding research participation. Service members described participation decisions for 34 individual research experiences in 27 separate studies. Service members' reasons for participation in research clustered in three themes: others-, self-, and fit-focused. Each decision included reasons characterized by at least two themes. Reasons from all three themes were apparent in two-thirds of individual participation decisions. Reasons described by at least half of the service members included a desire to make things better for others, to improve an organization, to help researchers, and to improve one's health; understanding how they fit in studies; and convenience of participation. Findings may help researchers, study sponsors, ethicists, military leaders, and military decision-makers better understand service members' reasons for participating in research and improve future recruitment of service members in health research. © 2017 Wiley Periodicals, Inc.

Women Who Have Sex with Women in Kenya and Their Sexual and Reproductive Health.

To describe sexual and reproductive health characteristics of women who have sex with women (WSW) in Kenya's three most populous cities: Kisumu, Mombasa, and Nairobi. Although the last decade has shown an upsurge of health-related research studies in African sexual minority populations, these studies have generally concentrated on the health status of men who have sex with men to the exclusion of WSW. This study presents the first findings on Kenyan WSW's sexual and reproductive health. A community-based, cross-sectional survey was conducted among 280 women who were at least 18 years old, had at least one female sexual partner in the past three years, and were Kenyan residents. A significant proportion of participants reported that they had at least one male sexual partner in the past three years (38.9%), ever had an abortion (13.2%), been infected with at least one sexually transmitted infection (STI) in the past three years (33.9%), and been tested for HIV at least once (88.9%). Of the women who reported having been tested for HIV, 9.4% (7.5% of the total sample) received a positive test result. Some women noted that they were open with their doctors about their sexual orientation, and that their doctors had not reacted negatively to this information. WSW in Kenya are at risk for negative sexual and reproductive health outcomes, including HIV, STIs, unplanned pregnancy, and unsafe abortion, positioning these women as a critical population for public health efforts. Some WSW actively exercise their agency in making important health decisions. Therefore, this study indicates a need to incorporate WSW's health concerns within Kenyan national health policy programming.

Relation of Health Condition and Quality of Life: Examination of the Quality of Life of the Disadvantaged Population in Nyíregyháza by the FT Quality of Life Index

Abstract Improving the health of the population, stopping and changing the disadvantage trends have long been one of the health policy objectives in the regions. Unfortunately in spite of the declared goals Hungary is far away from giving priority to health issues as they are not given proper attention either on individual or societal level. In modern societies local communities play an increasingly important role in the development of quality of life. Their activity, their influence over the power structures become dominant. Quality of life is made up of objective and subjective components. Their important sub-areas are health, financial situation, income situations, housing and social relationship. Quality of life studies are the most frequent health-related research studies, the most remarkable results have been achieved here. Healthrelated quality of life is one of the most important and maybe the most frequently researched dimension of quality of life showing how much health status contributes to the welfare of the individuals. The primary objective of the research studies the improvement of the health status of the population and within it the health status of the individual as well as the reduction of health inequalities can be designated. The improvement of the quality of life can be rationalized as health benefit for the society. Its two main components are the extension of the life expectancy and the increase in numbers of the resulting years. The health of the Hungarian population is said to be unfavourable in international comparison and it can also be stated that it is significantly poorer than it could be expected according to the socio-economic development level

Research Ethics Committees in the field of health-related human research--a European perspective and the case of Austria.

Human subject abuse and patient harm through medical research have led to the establishment of Institutional Review Boards (IRBs or Research Ethics Committees (RECS)), who independently scrutinise research protocols. In the field of trials with medicinal products as well as trials testing medical devices, an obligation for submission prior to realisation is granted within Europe through European directives. However, regulation of other fields of health-related research, e.g., psychological trials, public health and epidemiological studies or healthcare research is the responsibility of EU Member States; and European laws differ widely. The article gives an overview of European regulations in the field of REC review requirements, critically analyses Austrian legislation in this field and describes an institutional solution for legislative gaps in Austria--the Research Committee for Scientific and Ethical Questions (RCSEQ). Finally, important European initiatives for the future are pointed out.

From health behaviours to health practices: an introduction

The concept of health behaviour has become ubiquitous in health-related research and intervention studies, as well as among policymakers. Developed from psychology, it is based on a number of key underlying assumptions that enable it to be integrated in an existing health research paradigm. However, by conceiving individual health behaviour as discrete, stable, homogeneous and measurable, many other aspects of health-related activities, in particular those relating to power and sociality, are excluded. As a consequence, any genuine contribution from medical sociology or related disciplines is, at best, limited. To counter this, it is proposed that reconceptualising what people do in terms of health practices, rather than health behaviour, captures the emergent and contingent properties of people's activities in particular situations. Rather than serving as a direct replacement term, and thus reproducing the same epistemological assumptions, it is argued that its very flexibility and capacity to articulate different theoretical orientations is likely to be its major strength.

Beyond the Barriers: Factors that Influence African Americans to Participate in Research

The objective of the paper is to describe educational profiles and motivations for health related research study participation of a distinct minority cohort, in a non-clinical setting. Many respondents (n=119) participated in at least two studies and reported that the main motivator was having a relative with the studied disease. More than 65% of this cohort had earned a bachelor degree or higher compared to 40% of those that had not participated in a health related research study. This study also documented that African Americans who participate in health related research studies are civic minded individuals that understand informed consent and are willing to submit a variety of biological samples for research.