[HTML][HTML] Global healthcare fairness: We should be sharing more, not less, data

KP Seastedt, P Schwab, Z O'Brien, E Wakida… - PLOS Digital …, 2022 - journals.plos.org
The availability of large, deidentified health datasets has enabled significant innovation in
using machine learning (ML) to better understand patients and their diseases. However …

[HTML][HTML] The use of citizens' juries in health policy decision-making: a systematic review

J Street, K Duszynski, S Krawczyk… - Social science & …, 2014 - Elsevier
Deliberative inclusive approaches, such as citizen juries, have been used to engage citizens
on a range of issues in health care and public health. Researchers engaging with the public …

Perspectives of youths on the ethical use of artificial intelligence in health care research and clinical care

K Thai, KH Tsiandoulas, EA Stephenson… - JAMA Network …, 2023 - jamanetwork.com
Importance Understanding the views and values of patients is of substantial importance to
developing the ethical parameters of artificial intelligence (AI) use in medicine. Thus far …

Public preferences about secondary uses of electronic health information

D Grande, N Mitra, A Shah, F Wan… - JAMA internal …, 2013 - jamanetwork.com
Importance As health information technology grows, secondary uses of personal health
information offer promise in advancing research, public health, and health care. Public …

Ethical concerns around use of artificial intelligence in health care research from the perspective of patients with meningioma, caregivers and health care providers: a …

MD McCradden, A Baba, A Saha, S Ahmad… - … Open Access Journal, 2020 - cmajopen.ca
Background: As artificial intelligence (AI) approaches in research increase and AI becomes
more integrated into medicine, there is a need to understand perspectives from members of …

Active choice but not too active: public perspectives on biobank consent models

CM Simon, J L'heureux, JC Murray, P Winokur… - Genetics in …, 2011 - nature.com
Purpose: Despite important recent work, US public attitudes toward specific biobank consent
models are not well understood. Public opinion data can help shape efforts to develop …

“Let's get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative …

EM Hill, EL Turner, RM Martin, JL Donovan - BMC medical research …, 2013 - Springer
Background Opt-in consent is usually required for research, but is known to introduce
selection bias. This is a particular problem for large scale epidemiological studies using only …

[HTML][HTML] Sharing medical data for health research: the early personal health record experience

ER Weitzman, L Kaci, KD Mandl - Journal of medical Internet research, 2010 - jmir.org
Background: Engaging consumers in sharing information from personally controlled health
records (PCHRs) for health research may promote goals of improving care and advancing …

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

E Hutchings, M Loomes, P Butow, FM Boyle - Systematic Reviews, 2021 - Springer
Background We aimed to synthesise data on issues related to stakeholder perceptions of
consent for the use of secondary data. To better understand the current literature available …

[HTML][HTML] Patient and public views on electronic health records and their uses in the United Kingdom: cross-sectional survey

SA Luchenski, JE Reed, C Marston, C Papoutsi… - Journal of medical …, 2013 - jmir.org
Background The development and implementation of electronic health records (EHRs)
remains an international challenge. Better understanding of patient and public attitudes and …