Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings

BMC Research Notes

Paula A Johnson¹  Piper S Orton²  Mark J Ommerborn⁴  Dora A Tovar²  Josh Gagne³  Laura R Cohen²  Cheryl R Clark¹  Kya N Grooms⁴  Heather E Riden² 

[1] Harvard Medical School, 25 Shattuck Street, Boston, Massachusetts, USA;Connors Center for Women’s Health and Gender Biology, Brigham and Women’s Hospital, 75 Francis Street, Boston, Massachusetts, USA;Survey & Data Management Core, Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, Massachusetts, USA;Center for Community Health and Health Equity, Brigham and Women’s Hospital, 1620 Tremont Street, Boston, Massachusetts, USA

关键词: Vulnerable populations;    Poverty;    Informed consent;    Health status disparities;    Patient selection;    Community-based participatory research;   

Others  :  1165263
DOI  :  10.1186/1756-0500-5-624

 received in 2012-10-17, accepted in 2012-11-02,  发布年份 2012

【 摘 要 】

Background

To improve equity in access to medical research, successful strategies are needed to recruit diverse populations. Here, we examine experiences of community health center (CHC) staff who guided an informed consent process to overcome recruitment barriers in a medical record review study.

Methods

We conducted ten semi-structured interviews with CHC staff members. Interviews were audiotaped, transcribed, and structurally and thematically coded. We used NVivo, an ethnographic data management software program, to analyze themes related to recruitment challenges.

Results

CHC interviewees reported that a key challenge to recruitment included the difficult balance between institutional review board (IRB) requirements for informed consent, and conveying an appropriate level of risk to patients. CHC staff perceived that the requirements of IRB certification itself posed a barrier to allowing diverse staff to participate in recruitment efforts. A key barrier to recruitment also included the lack of updated contact information on CHC patients. CHC interviewees reported that the successes they experienced reflected an alignment between study aims and CHC goals, and trusted relationships between CHCs and staff and the patients they recruited.

Conclusions

Making IRB training more accessible to CHC-based staff, improving consent form clarity for participants, and developing processes for routinely updating patient information would greatly lower recruitment barriers for diverse populations in health services research.

【 授权许可】

   
2012 Riden et al.; licensee BioMed Central Ltd.

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