EMS providers and exception from informed consent research: benefits, ethics, and community consultation.

BACKGROUND: As attention to, and motivation for, emergency medical services (EMS)-related research continues to grow, particularly exception from informed consent (EFIC) research, it is important to understand the thoughts, beliefs, and experiences of EMS providers who are actively engaged in the research. OBJECTIVE: We explored the attitudes, beliefs, and experiences of EMS providers regarding their involvement in prehospital emergency research, particularly EFIC research. METHODS: Using a qualitative design, 24 participants were interviewed including nationally registered paramedics and Virginia-certified emergency medical technicians employed at Richmond Ambulance Authority, the participating EMS agency. At the time of our interviews, the EMS agency was involved in an EFIC trial. Transcribed interview data were coded and analyzed for themes. Findings were presented back to the EMS agency for validation. RESULTS: Overall, there appeared to be support for prehospital emergency research. Participants viewed research as necessary for the advancement of the field of EMS. Improvement in patient care was identified as one of the most important benefits. A number of ethical considerations were identified: individual risk versus public good and consent. The EMS providers in our study were open to working with EMS researchers throughout the community consultation and public disclosure process. CONCLUSION: The EMS providers in our study valued research and were willing to participate in studies. Support for research was balanced with concerns and challenges regarding the role of providers in the research process.

Research ethics education for community-engaged research: a review and research agenda.

Community engagement is increasingly becoming an integral part of research. "Community-engaged research" (CEnR) introduces new stakeholders as well as unique challenges to the protection of participants and the integrity of the research process. We--a group of representatives of CTSA-funded institutions and others who share expertise in research ethics and CEnR--have identified gaps in the literature regarding (1) ethical issues unique to CEnR; (2) the particular instructional needs of academic investigators, community research partners, and IRB members; and (3) best practices for teaching research ethics. This paper presents what we know, as well as what we still need to learn, in order to develop quality research ethics educational materials tailored to the full range of stakeholder groups in CEnR.

Community consultation and public disclosure: preliminary results from a new model.

Emergency medicine research conducted under the exception from informed consent (EFIC) regulation enables critical scientific advancements. When EFIC is proposed, there is a requirement for broad community consultation and public disclosure (CC/PD) regarding the risks and benefits of the study. At the present time, no clear guidelines or standards exist for conducting and evaluating the CC/PD. This preliminary study tested the feasibility and acceptability of a new approach to CC/PD for a large-scale EFIC trial by engaging community members in designing and conducting the strategies. The authors enrolled key community members (called community advocates for research, or CARs) to use community-based participatory methods to design and implement CC/PD. By partnering with community members who represent target populations for the research study, this new approach has demonstrated a feasible CC/PD plan with greater community participation and less cost than previous studies. In a community survey, the percentage of community members reporting having heard about the EFIC trial more than doubled after employing the new approach. This article discusses initial implementation and results.

The exercise experience in adults with arthritis: a qualitative approach.

OBJECTIVE: To examine perceptions of exercise prior to arthritis, the ways in which arthritis affects exercise behavior, and current exercise behaviors in people with arthritis. METHODS: Qualitative analyses were used to identify themes in 12 focus groups segmented by exercise status, education, and race. RESULTS: Non exercisers identified arthritis as a factor in exercise cessation. Exercisers described making changes in type, duration, intensity, and approach to exercise after diagnosis. Exercisers also described participating in a wide range of activities, whereas nonexercisers primarily cited walking. CONCLUSIONS: Intervention and marketing strategies should focus on different capabilities of exercisers and nonexercisers to modify exercise routines to accommodate arthritis.

Perceived exercise barriers, enablers, and benefits among exercising and nonexercising adults with arthritis: results from a qualitative study.

OBJECTIVE: Rates of participation in regular exercise are lower among individuals with arthritis than those without arthritis. This study examined perceived exercise barriers, benefits, and enablers in exercising and nonexercising adults with arthritis. METHODS: Twelve focus groups were conducted with 68 adults with arthritis. Groups were segmented by exercise status, socioeconomic status, and race. Focus group discussions were transcribed verbatim and coded. NVivo software was used to extract themes for exercisers and nonexercisers. RESULTS: A wide range of physical, psychological, social, and environmental factors were perceived to influence exercise. Some of these factors were similar to those in general adult samples, whereas others were unique to individuals with chronic disease. Symptoms of arthritis were barriers to exercise, yet improvements in these outcomes were also seen as potential benefits of and motivations for exercise. Exercisers had experienced these benefits and were more likely to have adapted their exercise to accommodate the disease, whereas nonexercisers desired these benefits and were more likely to have stopped exercising since developing arthritis. Health care providers' advice to exercise and the availability of arthritis-specific programs were identified as needs. CONCLUSION: This study has implications for how to market exercise to individuals with arthritis and how communities and health care professionals can facilitate the uptake of exercise. These implications are discussed.