Patient Preferences Regarding Informed Consent Models for Participation in a Learning Health Care System for Oncology.
JCO Oncol Pract
; 16(9): e977-e990, 2020 09.
Article
em En
| MEDLINE
| ID: mdl-32352881
ABSTRACT
PURPOSE:
The expansion of learning health care systems (LHSs) promises to bolster research and quality improvement endeavors. Stewards of patient data have a duty to respect the preferences of the patients from whom, and for whom, these data are being collected and consolidated.METHODS:
We conducted democratic deliberations with a diverse sample of 217 patients treated at 4 sites to assess views about LHSs, using the example of CancerLinQ, a real-world LHS, to stimulate discussion. In small group discussions, participants deliberated about different policies for how to provide information and to seek consent regarding the inclusion of patient data. These discussions were recorded, transcribed, and de-identified for thematic analysis.RESULTS:
Of participants, 67% were female, 61% were non-Hispanic Whites, and the mean age was 60 years. Patients' opinions about sharing their data illuminated 2 spectra trust/distrust and individualism/collectivism. Positions on these spectra influenced the weight placed on 3 priorities promoting societal altruism, ensuring respect for persons, and protecting themselves. In turn, consideration of these priorities seemed to inform preferences regarding patient choices and system transparency. Most advocated for a policy whereby patients would receive notification and have the opportunity to opt out of including their medical records in the LHS. Participants reasoned that such a policy would balance personal protections and societal welfare.CONCLUSION:
System transparency and patient choice are vital if patients are to feel respected and to trust LHS endeavors. Those responsible for LHS implementation should ensure that all patients receive an explanation of their options, together with standardized, understandable, comprehensive materials.
Texto completo:
1
Coleções:
01-internacional
Temas:
Cuidados_paliativos
/
Geral
Base de dados:
MEDLINE
Assunto principal:
Preferência do Paciente
/
Sistema de Aprendizagem em Saúde
Limite:
Female
/
Humans
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Middle aged
Idioma:
En
Revista:
JCO Oncol Pract
Ano de publicação:
2020
Tipo de documento:
Article