Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system
Abstract Background Implementation of an LHS in cardiology departments presents itself with ethical challenges, including ethical review and informed consent. In this qualitative study, we investigated stakeholders' attitudes toward ethical issues regarding the implementation of an LHS in the c...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2024-01-01
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| Series: | Learning Health Systems |
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| Online Access: | https://doi.org/10.1002/lrh2.10379 |
| _version_ | 1797351433567207424 |
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| author | Sara Laurijssen Rieke van derGraaf Ewoud Schuit Melina denHaan Wouter vanDijk Rolf Groenwold Saskia le Sessie Diederick Grobbee Martine deVries |
| author_facet | Sara Laurijssen Rieke van derGraaf Ewoud Schuit Melina denHaan Wouter vanDijk Rolf Groenwold Saskia le Sessie Diederick Grobbee Martine deVries |
| author_sort | Sara Laurijssen |
| collection | DOAJ |
| description | Abstract Background Implementation of an LHS in cardiology departments presents itself with ethical challenges, including ethical review and informed consent. In this qualitative study, we investigated stakeholders' attitudes toward ethical issues regarding the implementation of an LHS in the cardiology department. Methods We conducted a qualitative study using 35 semi‐structured interviews and 5 focus group interviews with 34 individuals. We interviewed cardiologists, research nurses, cardiovascular patients, ethicists, health lawyers, epidemiologists/statisticians and insurance spokespersons. Results Respondents identified different ethical obstacles for the implementation of an LHS within the cardiology department. These obstacles were mainly on ethical oversight in LHSs; in particular, informed con sent and data ownership were discussed. In addition, respondents reported on the role of patients in LHS. Respondents described the LHS as a possibility for patients to engage in both research and care. While the LHS can promote patient engagement, patients might also be reduced to their data and are therefore at risk, according to respondents. Conclusions Views on the ethical dilemmas of a LHSs within cardiology are diverse. Similar to the literary debate on oversight, there are different views on how ethical oversight should be regulated. This study adds to the literary debate on oversight by highlighting that patients wish to be informed about the learning activities within the LHS they participate in, and that they wish to actively contribute by sharing their data and identifying learning goals, provided that informed consent is obtained. |
| first_indexed | 2024-03-08T13:00:22Z |
| format | Article |
| id | doaj.art-7109eddd75654584904eea453f8f91fc |
| institution | Directory Open Access Journal |
| issn | 2379-6146 |
| language | English |
| last_indexed | 2024-03-08T13:00:22Z |
| publishDate | 2024-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Learning Health Systems |
| spelling | doaj.art-7109eddd75654584904eea453f8f91fc2024-01-19T10:27:42ZengWileyLearning Health Systems2379-61462024-01-0181n/an/a10.1002/lrh2.10379Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare systemSara Laurijssen0Rieke van derGraaf1Ewoud Schuit2Melina denHaan3Wouter vanDijk4Rolf Groenwold5Saskia le Sessie6Diederick Grobbee7Martine deVries8Department of Healthcare Saxion Applied University Deventer NetherlandsUniversity Medical Center Utrecht NetherlandsUniversity Medical Center Utrecht NetherlandsLeiden University Medical Center Leiden NetherlandsUniversity Medical Center Utrecht NetherlandsLeiden University Medical Center Leiden NetherlandsLeiden University Medical Center Leiden NetherlandsUniversity Medical Center Utrecht NetherlandsDepartment of Medical Ethics and Health Law Leids Universitair Medisch Centrum Leiden NetherlandsAbstract Background Implementation of an LHS in cardiology departments presents itself with ethical challenges, including ethical review and informed consent. In this qualitative study, we investigated stakeholders' attitudes toward ethical issues regarding the implementation of an LHS in the cardiology department. Methods We conducted a qualitative study using 35 semi‐structured interviews and 5 focus group interviews with 34 individuals. We interviewed cardiologists, research nurses, cardiovascular patients, ethicists, health lawyers, epidemiologists/statisticians and insurance spokespersons. Results Respondents identified different ethical obstacles for the implementation of an LHS within the cardiology department. These obstacles were mainly on ethical oversight in LHSs; in particular, informed con sent and data ownership were discussed. In addition, respondents reported on the role of patients in LHS. Respondents described the LHS as a possibility for patients to engage in both research and care. While the LHS can promote patient engagement, patients might also be reduced to their data and are therefore at risk, according to respondents. Conclusions Views on the ethical dilemmas of a LHSs within cardiology are diverse. Similar to the literary debate on oversight, there are different views on how ethical oversight should be regulated. This study adds to the literary debate on oversight by highlighting that patients wish to be informed about the learning activities within the LHS they participate in, and that they wish to actively contribute by sharing their data and identifying learning goals, provided that informed consent is obtained.https://doi.org/10.1002/lrh2.10379cardiologyethicslearning healthcare systemqualitative research |
| spellingShingle | Sara Laurijssen Rieke van derGraaf Ewoud Schuit Melina denHaan Wouter vanDijk Rolf Groenwold Saskia le Sessie Diederick Grobbee Martine deVries Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system Learning Health Systems cardiology ethics learning healthcare system qualitative research |
| title | Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system |
| title_full | Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system |
| title_fullStr | Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system |
| title_full_unstemmed | Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system |
| title_short | Learning healthcare systems in cardiology: A qualitative interview study on ethical dilemmas of a learning healthcare system |
| title_sort | learning healthcare systems in cardiology a qualitative interview study on ethical dilemmas of a learning healthcare system |
| topic | cardiology ethics learning healthcare system qualitative research |
| url | https://doi.org/10.1002/lrh2.10379 |
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