TY - JOUR
T1 - Patient preferences regarding informed consent models for participation in a learning health care system for oncology
AU - Jones, Rochelle D.
AU - Krenz, Chris
AU - Gornick, Michele
AU - Griffith, Kent A.
AU - Spence, Rebecca
AU - Bradbury, Angela R.
AU - de Vries, Raymond
AU - Hawley, Sarah T.
AU - Hayward, Rodney A.
AU - Zon, Robin
AU - Bolte, Sage
AU - Sadeghi, Navid
AU - Schilsky, Richard L.
AU - Jagsi, Reshma
N1 - Funding Information:
Supported by Grant No. R01 CA201356 from the National Institutes of Health.
Publisher Copyright:
© 2020 by American Society of Clinical Oncology
PY - 2020/9/1
Y1 - 2020/9/1
N2 - 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.
AB - 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.
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U2 - 10.1200/JOP.19.00300
DO - 10.1200/JOP.19.00300
M3 - Article
C2 - 32352881
AN - SCOPUS:85090740332
SN - 2688-1527
VL - 16
SP - E977-E990
JO - JCO Oncology Practice
JF - JCO Oncology Practice
IS - 9
ER -