Subcontract with UIC, Principal Investigator Elizabeth Calhoun
Description: We are in the process of developing a one-hour video which demonstrates, through a series of vignettes, how to ethically recruit and obtain valid voluntary informed consent from research participants.  The intended audience is individuals responsible for recruiting research participants and obtaining informed consent in community-engaged research.  These individuals will likely have little or no prior research experience/training; have limited formal education; and be working in the community in which they live.  The goal is to demonstrate to learners what it will be like to be in the field recruiting participants and obtaining informed consent, prepare them for various challenges they might face (e.g., answering questions, screening people for inclusion/exclusion criteria and telling them they are not eligible, ensuring that people understand what they are being told), and discuss how to balance the ethical requirement to obtain voluntary informed consent with their “job” to recruit and enroll research participants. The video will be distributed via the Internet and DVD.  Dr. Anderson is partnering with the faculty at the UIC Center of Excellence in Eliminating Health Disparities as well as Charles Nolley, Yevette Brown, and Tony LaBriola in the Division of Digital Learning and Media Design in the Center for Online Teaching and Learning at Governor State University.  Dr. Anderson will provide content expertise in human subjects protection and community engaged research.

Subcontract with UIC, Principal Investigators Kent Hoskins and Richard Warnecke
Description: The goal of this project is to identify the potential ethical implications of a proposed clinic-wide policy at a group of federally qualified health centers (FQHCs) in Chicago to provide female patients ages 25-70 with personalized breast cancer risk information. Our partner FQHC, Chicago Family Health Center, plans to assess breast cancer risk using a computerized tool developed based on models that are widely used in clinical practice. While it is hypothesized that personalized risk assessment will improve adherence to national screening and prevention guidelines (particularly for those women in the higher risk categories), the potential psychosocial harms and benefits of personalized breast cancer risk assessment in this particular population are not fully known. Information about risk perceptions, the value of individualized risk assessment, and preferences regarding recommended surveillance and prevention strategies is also limited. This supplement will support the collection of data from FQHC patients and primary care physicians (PCP) using qualitative methodologies prior to full implementation of the policy. We propose to analyze audio recordings of patient-physician conversations about individualized breast cancer risk and conduct in-depth interviews with patients and physicians. Understanding of patient and PCP views on the potential benefits and harms of individualized breast cancer risk assessment will allow us to develop an ethical approach to risk communication that promotes respect for individual patient autonomy and provides appropriate support to patients in all risk strata. Findings will inform the refinement of physician training and patient education materials.

In the context of an FQHC clinic-wide policy to assess breast cancer risk in female patients ages 25-70, we propose the following specific aims:

Aim 1. Examine patient and primary care physician perspectives on the potential harms [e.g., increased psychological distress] and benefits [e.g., reassurance about breast cancer risk, prevention and early detection] of receiving personalized breast cancer risk information.

Aim 2. Examine patient values and preferences regarding breast cancer risk communication, surveillance, and risk reduction measures.

Aim 3. Explore modifiable factors [e.g., physician communication, comprehension] that influence patient psychological distress in reaction to personalized breast cancer risk information.

Aim 4. Integrate findings to refine physician education and delivery of breast cancer risk information to support informed decision-making, enhance benefits, and reduce risks to patients.

Subcontract with Saint Louis University, Principal Investigator James Dubois
Description: This study researches actual cases of professional wrongdoing in medical research and practice to gather data on individual and environmental factors. Using an historiometric method, statistical analyses are conducted to analyze how cases of wrongdoing are identified and stopped. Statistical analyses will also determine which individual and environmental variables predict the kinds of wrongdoing in different domains.

Sponsors Neiswanger Bioethics Institute, Dominican University, Maywood Environmental Beautification Commission
Description: The Maywood Multicultural Farmers market program was established in 2008 in partnership with community resident Loretta Brown. The aim is to increase the availability of fresh produce in Maywood, provide healthy eating/ healthy activity opportunities, and promote culturally relevant community health. In 2011 the Loyola Physician for Human Rights student group headed by Julia Drubinskaya, Moshini Sivasubramaniam, Jacob Stelter, joined the market and together we developed the Healthy Community Connections study.  The purpose of this study is to describe the consumer-driven process to improve access to affordable, healthy, nutritious food in the Loyola service area. Specific aims are to describe local community residents’ food purchasing habits, food preparation habits, knowledge of health benefits and barriers and motivators to participating in a local food system to improve access to fresh produce. Related projects include the Wellness Wizards a health and wellness summer camp created and implemented by Ms. Kristin Kalita, a M2 at Stritch School of Medicine. Wellness Wizards which is a summer health program that aims to motivate children to live healthy lives and to facilitate behavior change. Medical students work alongside grade-school children of Maywood as the children hopefully realize that health is a commitment for life, not simply a subject that is learned in order to pass a test in school. Through a variety of large and small group activities, the children explore fitness, nutrition, hygiene, mental health, social health, and safety concepts. All of the activities are designed to be interactive and to empower the children to gain control of their health.

Funded by American Recovery and Reinvestment Act and Illinois Department of Commerce and Economic Opportunity
Description: Loyola University Chicago, Neiswanger Institute for Bioethics in partnership with Maywood Environmental Commission, University Illinois Extension and the Cook County President’s Office of Employment has developed the Cook County Green Corps. The project is a 4 month demonstration workforce development plan to promote careers pathways in urban agricultural and environmental sustainability. In partnership with Chicago Botanic Gardens, Windy City Harvest and Chicago Boot Camp program we created the Building African-American Leadership in the Urban Agriculture Movement study. The purpose of this study is to identify crew and staff evaluation of Chicago Urban Agriculture workforce development programs. Specific aims are to identify staff and crew evaluation of 1) program experience, 2) impact on community development, and 3) leadership development in the urban agriculture movement.

Funded by Model Community grant from the Cook County Department of Public Health and the Public Health Institute of Metropolitan Chicago
Description: The Urban Garden Connection project is conducted in partnership with Broadview Park District, Village of Broadview and Maywood Park Districts. Urban Garden Connection supports a network of community and teaching gardens in Broadview and Maywood with the goal of improving the lives and the community through urban gardens and raising awareness of healthy local food systems. The Model Communities program aligns with the nationwide effort of developing local-level policy, system and environmental change that result in residents having access to healthy foods and having safe places to be physically active. The team aims to expand community gardens, local food systems and food policies in the West Suburbs.

NS Hogan, TN Sanders, S Cherny, KJ Helzlsouer
Description: This exploratory pilot study was designed to investigate the views, attitudes and decision-making considerations of primary care patients about the relatively new technology of direct-to-consumer (DTC) genome testing.  DTC genome testing examines thousands to millions of variants in an individual’s genetic material to determine disease susceptibility and may not involve a health care professional in the process.  Phase one of the study consisted of focus groups with primary care patients which explored their attitudes towards, motivations for and concerns about such testing.  Phase two involved longitudinal interviews over one year with a portion of these patients who agreed to undergo testing and examined their reason for testing, decision-making factors, and response to testing and results over time.

J M Leggett, J Sinacore, RL Gamelli
Description: Moral distress is described as the painful feelings and psychological disequilibrium when a person believes she knows the morally right action to take and is unable to carry it out due to external or internal constraints.  It has been studied in intensive care unit (ICU) nurses, but not in Burn ICU nurses.  A pilot study was performed to gather initial data on moral distress among nurses treating burn victims.  An intervention aimed at decreasing the level of moral distress in these nurses was developed and evaluated.