Theodoros V Giannouchos1,2, Alva O Ferdinand3,4, Gurudev Ilangovan1, Eric Ragan5, W Benjamin Nowell6, Hye-Chung Kum1,3, Cason D Schmit1,3. 1. Population Informatics Lab, School of Public Health, Texas A&M University, College Station, Texas, USA. 2. Pharmacotherapy Outcomes Research Center, College of Pharmacy, University of Utah, Salt Lake City, Utah, USA. 3. Department of Health Policy and Management, School of Public Health, Texas A&M University, College Station, Texas, USA. 4. Southwest Rural Health Research Center, School of Public Health, Texas A&M University, College Station, Texas, USA. 5. Department of Computer and Information Science and Engineering, University of Florida, Gainesville, Florida, USA. 6. Patient-Centered Research, Global Healthy Living Foundation, Upper Nyack, New York, USA.
Abstract
OBJECTIVE: While patients often contribute data for research, they want researchers to protect their data. As part of a participatory design of privacy-enhancing software, this study explored patients' perceptions of privacy protection in research using their healthcare data. MATERIALS AND METHODS: We conducted 4 focus groups with 27 patients on privacy-enhancing software using the nominal group technique. We provided participants with an open source software prototype to demonstrate privacy-enhancing features and elicit privacy concerns. Participants generated ideas on benefits, risks, and needed additional information. Following a thematic analysis of the results, we deployed an online questionnaire to identify consensus across all 4 groups. Participants were asked to rank-order benefits and risks. Themes around "needed additional information" were rated by perceived importance on a 5-point Likert scale. RESULTS: Participants considered "allowance for minimum disclosure" and "comprehensive privacy protection that is not currently available" as the most important benefits when using the privacy-enhancing prototype software. The most concerning perceived risks were "additional checks needed beyond the software to ensure privacy protection" and the "potential of misuse by authorized users." Participants indicated a desire for additional information with 6 of the 11 themes receiving a median participant rating of "very necessary" and rated "information on the data custodian" as "essential." CONCLUSIONS: Patients recognize not only the benefits of privacy-enhancing software, but also inherent risks. Patients desire information about how their data are used and protected. Effective patient engagement, communication, and transparency in research may improve patients' comfort levels, alleviate patients' concerns, and thus promote ethical research.
OBJECTIVE: While patients often contribute data for research, they want researchers to protect their data. As part of a participatory design of privacy-enhancing software, this study explored patients' perceptions of privacy protection in research using their healthcare data. MATERIALS AND METHODS: We conducted 4 focus groups with 27 patients on privacy-enhancing software using the nominal group technique. We provided participants with an open source software prototype to demonstrate privacy-enhancing features and elicit privacy concerns. Participants generated ideas on benefits, risks, and needed additional information. Following a thematic analysis of the results, we deployed an online questionnaire to identify consensus across all 4 groups. Participants were asked to rank-order benefits and risks. Themes around "needed additional information" were rated by perceived importance on a 5-point Likert scale. RESULTS: Participants considered "allowance for minimum disclosure" and "comprehensive privacy protection that is not currently available" as the most important benefits when using the privacy-enhancing prototype software. The most concerning perceived risks were "additional checks needed beyond the software to ensure privacy protection" and the "potential of misuse by authorized users." Participants indicated a desire for additional information with 6 of the 11 themes receiving a median participant rating of "very necessary" and rated "information on the data custodian" as "essential." CONCLUSIONS: Patients recognize not only the benefits of privacy-enhancing software, but also inherent risks. Patients desire information about how their data are used and protected. Effective patient engagement, communication, and transparency in research may improve patients' comfort levels, alleviate patients' concerns, and thus promote ethical research.
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