Saif Khairat1, Katie Tirtanadi2, Paige Ottmar2, Betsy Sleath3, Jihad Obeid4. 1. The Carolina Health Informatics Program, The University of North Carolina at Chapel Hill, North Carolina, United States. 2. The Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, North Carolina, United States. 3. The Eshelman School of Pharmacy and The Cecil Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill, North Carolina, United States. 4. The Medical University, South Carolina, United States.
Abstract
BACKGROUND: Obtaining informed consent from research study participants continues to meet difficulties. New ways to connect with potential participants are necessary to address barriers, expand enrollment and offer more services to underserved populations. OBJECTIVES: Electronic consent is designed to complete consenting sessions remotely and may help combat the obstacles inherent in the traditional informed consent process. We investigate the implementation of an electronic consent platform, Teleconsent, to broaden and diversify recruitment for clinical research. METHODS: Semi-structured interviews were conducted with community members to assess their perceptions regarding the acceptability and usability of Teleconsent, a form of electronic consent. Interviews were structured to determine the main benefits, challenges and concerns as detailed by each participant. Participants were divided into rural and urban groupings. RESULTS: We interviewed 40 participants to gather first-time perceptions of Teleconsent. We found overall positive results. Predominately in urban communities, participants possessed the technological skills and amenities to support smooth implementation of this technology. However, many participants reflect on the challenges regarding logistics, privacy and reliability of utilizing Teleconsent in underserved, rural areas. 5 of 19 participants, more than a quarter for the rural group, experienced Teleconsent software problems. During these sessions, an alternative process with paper templates was employed to complete interviews. CONCLUSION: Perceptions regarding Teleconsent demonstrate current challenges along with potential acceptance within different communities. This is despite the fact that on its own it will not be able to overcome the barriers currently found in the informed consent process. Still, investment in electronic consent, including the development of enhanced and interactive content, can potentially revolutionize this process. Our findings offer a preliminary step towards determining the feasibility and acceptance of Teleconsent, a form of electronic consent, in different communities. More research surrounding the logistics of adoption is necessary in order to determine success.
BACKGROUND: Obtaining informed consent from research study participants continues to meet difficulties. New ways to connect with potential participants are necessary to address barriers, expand enrollment and offer more services to underserved populations. OBJECTIVES: Electronic consent is designed to complete consenting sessions remotely and may help combat the obstacles inherent in the traditional informed consent process. We investigate the implementation of an electronic consent platform, Teleconsent, to broaden and diversify recruitment for clinical research. METHODS: Semi-structured interviews were conducted with community members to assess their perceptions regarding the acceptability and usability of Teleconsent, a form of electronic consent. Interviews were structured to determine the main benefits, challenges and concerns as detailed by each participant. Participants were divided into rural and urban groupings. RESULTS: We interviewed 40 participants to gather first-time perceptions of Teleconsent. We found overall positive results. Predominately in urban communities, participants possessed the technological skills and amenities to support smooth implementation of this technology. However, many participants reflect on the challenges regarding logistics, privacy and reliability of utilizing Teleconsent in underserved, rural areas. 5 of 19 participants, more than a quarter for the rural group, experienced Teleconsent software problems. During these sessions, an alternative process with paper templates was employed to complete interviews. CONCLUSION: Perceptions regarding Teleconsent demonstrate current challenges along with potential acceptance within different communities. This is despite the fact that on its own it will not be able to overcome the barriers currently found in the informed consent process. Still, investment in electronic consent, including the development of enhanced and interactive content, can potentially revolutionize this process. Our findings offer a preliminary step towards determining the feasibility and acceptance of Teleconsent, a form of electronic consent, in different communities. More research surrounding the logistics of adoption is necessary in order to determine success.
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