Patient perspectives on use of electronic health records for research recruitment
Abstract Background EHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with r...
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| Format: | Article |
| Language: | English |
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BMC
2019-02-01
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| Series: | BMC Medical Research Methodology |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12874-019-0686-z |
| _version_ | 1819115423475433472 |
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| author | Laura M. Beskow Kathleen M. Brelsford Catherine M. Hammack |
| author_facet | Laura M. Beskow Kathleen M. Brelsford Catherine M. Hammack |
| author_sort | Laura M. Beskow |
| collection | DOAJ |
| description | Abstract Background EHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients’ willingness to participate. Methods We conducted 15 focus groups (n = 110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters. Results For initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable—typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions. Conclusions External validity relies heavily on researchers’ success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research. |
| first_indexed | 2024-12-22T05:00:57Z |
| format | Article |
| id | doaj.art-4e15ae3809e846f99e3538270fc0db95 |
| institution | Directory Open Access Journal |
| issn | 1471-2288 |
| language | English |
| last_indexed | 2024-12-22T05:00:57Z |
| publishDate | 2019-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Research Methodology |
| spelling | doaj.art-4e15ae3809e846f99e3538270fc0db952022-12-21T18:38:15ZengBMCBMC Medical Research Methodology1471-22882019-02-0119111410.1186/s12874-019-0686-zPatient perspectives on use of electronic health records for research recruitmentLaura M. Beskow0Kathleen M. Brelsford1Catherine M. Hammack2Center for Biomedical Ethics and Society, Vanderbilt University Medical CenterCenter for Biomedical Ethics and Society, Vanderbilt University Medical CenterCenter for Biomedical Ethics and Society, Vanderbilt University Medical CenterAbstract Background EHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients’ willingness to participate. Methods We conducted 15 focus groups (n = 110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters. Results For initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable—typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions. Conclusions External validity relies heavily on researchers’ success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.http://link.springer.com/article/10.1186/s12874-019-0686-zElectronic health recordsPatient perspectivesResearch ethicsResearch subject recruitmentPhysician-patient relationshipTrust |
| spellingShingle | Laura M. Beskow Kathleen M. Brelsford Catherine M. Hammack Patient perspectives on use of electronic health records for research recruitment BMC Medical Research Methodology Electronic health records Patient perspectives Research ethics Research subject recruitment Physician-patient relationship Trust |
| title | Patient perspectives on use of electronic health records for research recruitment |
| title_full | Patient perspectives on use of electronic health records for research recruitment |
| title_fullStr | Patient perspectives on use of electronic health records for research recruitment |
| title_full_unstemmed | Patient perspectives on use of electronic health records for research recruitment |
| title_short | Patient perspectives on use of electronic health records for research recruitment |
| title_sort | patient perspectives on use of electronic health records for research recruitment |
| topic | Electronic health records Patient perspectives Research ethics Research subject recruitment Physician-patient relationship Trust |
| url | http://link.springer.com/article/10.1186/s12874-019-0686-z |
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