دورية أكاديمية
Perceptions of patient-reported outcome data access and sharing among patients with heart failure: ethical implications for research.
| العنوان: | Perceptions of patient-reported outcome data access and sharing among patients with heart failure: ethical implications for research. |
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| المؤلفون: | Mangal S; Department of Biobehavioral Nursing and Health Informatics, University of Washington School of Nursing, 1959 NE Pacific Street, Seattle, WA, USA., Niño de Rivera S; Columbia University School of Nursing, New York, NY, USA., Reading Turchioe M; Columbia University School of Nursing, New York, NY, USA., Myers A; Columbia University School of Nursing, New York, NY, USA., Benda N; Columbia University School of Nursing, New York, NY, USA., Goyal P; Department of Medicine, Weill Cornell Medicine, New York, NY, USA., Dugdale L; Department of Medicine, Center for Clinical Medical Ethics, Columbia University, New York, NY, USA., Masterson Creber R; Columbia University School of Nursing, New York, NY, USA. |
| المصدر: | European journal of cardiovascular nursing [Eur J Cardiovasc Nurs] 2024 Mar 12; Vol. 23 (2), pp. 145-151. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Oxford University Press Country of Publication: England NLM ID: 101128793 Publication Model: Print Cited Medium: Internet ISSN: 1873-1953 (Electronic) Linking ISSN: 14745151 NLM ISO Abbreviation: Eur J Cardiovasc Nurs Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: 2021- : [Oxford] : Oxford University Press Original Publication: Amsterdam ; New York : Elsevier, c2002- |
| مواضيع طبية MeSH: | Communication* , Heart Failure*, Humans ; Male ; Aged ; Female ; Information Dissemination ; Data Collection ; Patient Reported Outcome Measures |
| مستخلص: | Aims: In the face of growing expectations for data transparency and patient engagement in care, we evaluated preferences for patient-reported outcome (PRO) data access and sharing among patients with heart failure (HF) using an ethical framework. Methods and Results: We conducted qualitative interviews with a purposive sample of patients with HF who participated in a larger 8-week study that involved the collection and return of PROs using a web-based interface. Guided by an ethical framework, patients were asked questions about their preferences for having PRO data returned to them and shared with other groups. Interview transcripts were coded by three study team members using directed content analysis. A total of 22 participants participated in semi-structured interviews. Participants were mostly male (73%), White (68%) with a mean age of 72. Themes were grouped into priorities, benefits, and barriers to data access and sharing. Priorities included ensuring anonymity when data are shared, transparency with intentions of data use, and having access to all collected data. Benefits included: using data as a communication prompt to discuss health with clinicians and using data to support self-management. Barriers included: challenges with interpreting returned results, and potential loss of benefits and anonymity when sharing data. Conclusion: Our interviews with HF patients highlight opportunities for researchers to return and share data through an ethical lens, by ensuring privacy and transparency with intentions of data use, returning collected data in comprehensible formats, and meeting individual expectations for data sharing. Competing Interests: Conflict of interest: M.R.T. has the following conflicts to disclose: Boston Scientific Corp. (consulting); Iris OB Health Inc. (equity ownership). (© The Author(s) 2023. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.) |
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| معلومات مُعتمدة: | T32 NR016913 United States NR NINR NIH HHS; R01 HL161458 United States HL NHLBI NIH HHS; R00NR016275-05S1 United States NR NINR NIH HHS; R00 NR019124 United States NR NINR NIH HHS; R00 NR016275 United States NR NINR NIH HHS |
| فهرسة مساهمة: | Keywords: Patient-reported outcomes; heart failure; patient-centred care; research ethics; transparency |
| تواريخ الأحداث: | Date Created: 20230512 Date Completed: 20240314 Latest Revision: 20240606 |
| رمز التحديث: | 20240606 |
| مُعرف محوري في PubMed: | PMC10640657 |
| DOI: | 10.1093/eurjcn/zvad046 |
| PMID: | 37172035 |
| قاعدة البيانات: | MEDLINE |
| تدمد: | 1873-1953 |
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| DOI: | 10.1093/eurjcn/zvad046 |