Article Figures & Tables
Tables
Concept Definition Consent Agreement given free from coercion or undue influence having understood the benefits and risks Privacy Control over one’s personal interests (e.g., personal health information) Confidentiality Obligation of institutions to safeguard entrusted information Responsibility Taking ownership of a decision Accountability Assigning blame, answerability, liability, proper accounting Unintended consequences/ harms Outcomes unforeseen, generated without purposeful action Trust Reliability, consistency in words and actions, guardianship Public engagement Supporting the meaningful participation of members of society Characteristic No. (%) of participants* Patients
n = 18Caregivers
n = 7Health care providers
n = 5Gender Female 10 (56) 6 (86) 5 (100) Male 8 (44) 1 (14) 0 (0) Age category, yr 20–30 0 (0) 1 (14) 1 (20) 31–40 2 (11) 0 (0) 1 (20) 41–50 3 (17) 2 (29) 2 (40) 51–60 5 (28) 1 (14) 0 (0) 61–70 4 (22) 2 (29) 1 (20) 71–80 1 (6) 0 (0) 0 (0) 81–90 3 (17) 0 (0) 0 (0) Not disclosed 0 (0) 1 (14) Age, yr, mean 60.5 50.8 43.6 Highest level of education High school 2 (11) 1 (14) 0 (0) College/university 13 (72) 4 (57) 2 (40) Master’s degree/ doctorate 3 (17) 1 (14) 3 (60) Not disclosed 0 (0) 1 (14) Ethnicity White 11 (61) 4 (57) 2 (40) Black 1 (6) 0 (0) 1 (20) Asian 3 (17) 1 (14) 1 (20) Middle Eastern 1 (6) 0 (0) 0 (0) Central American 0 (0) 1 (14) 0 (0) European 2 (11) 1 (14) 1 (20) Type of health care provider Neurosurgery resident – – 1 (20) Medical administrative assistant – – 1 (20) Nurse practitioner – – 1 (20) Physiotherapist – – 1 (20) International medical graduate – – 1 (20) ↵* Except where noted otherwise.
- Table 3:
Key participant perceptions regarding the use of artificial intelligence in health care research
Concept Participant perceptions Consent Half of participants felt that each person must consent to allow his or her data to be used in research
Most were against private companies’ obtaining data without individual consent
Most said that even deidentified data should not be sold to private companies without consent
Privacy Deidentification was believed by most participants to be the removal of name, social insurance number, date of birth, address, health card number
Some participants felt that the loss of privacy is an acceptable sacrifice for the prospect of benefit to the larger population
Confidentiality Most participants felt that conditions under which individuals provide consent ought to be respected (e.g., use of data for health research v. marketing purposes)
All providers felt that receiving health information is a privilege given its highly sensitive nature
Responsibility Some participants accepted allocation of health resources via computerized output
Half felt it inappropriate to delegate responsibility to computers
One provider likened delegation of responsibility to computers to inappropriate treatment; the other providers advocated for shared decisions
Accountability Some participants indicated media as a key mechanism for accountability
Some participants indicated skepticism that institutions and companies could be held accountable
Unintended consequences/ harms Most participants accepted that mistakes happen
All stressed the need for transparency, disclosure and reparations
Some felt that transparency and publication prevent others from repeating the mistake
Trust Most participants felt that health care institutions are highly trusted organizations
Most participants felt that physicians and other health care providers are entrusted with carrying out research with health data
Public engagement Some participants felt that the public had a duty to be involved in research in some way
Most were unsure how specifically to have a voice in medical research
Issue Representative quote Protection of health data The world that we live in, there’s all kinds of access to information even though it’s protected, but you hear all kinds of scenarios where sensitive information gets leaked. So yeah, I would have some concerns. (Participant 18–042, patient) Skepticism regarding accountability mechanisms As a member of the public, my opinion doesn’t count. (Participant 18–004, patient) Allocation of treatment by computers It’s ethically incorrect, as you are picking and choosing who gets treatment. You need to give them options and have conversations with the patients. (Participant 18–008, provider) Allowing sale of data to private industry You should have to give up some [privacy]. … You want to be cured and [the company is] providing you with this cure, so you balance it out. (Participant 18–012, caregiver) Computer-based predictions Before [the brain tumour], I might [have said] yes, because I would say … it’s the survival of the fittest. … But you can never underestimate the fight … in a person, even with a disease. And [a patient] can far surpass the expectations that are set out in these kinds of statistics. (Participant 18–001, patient) Trust and confidentiality I think … in a democratic society, for members of the public to have faith in the health care system … individuals need to believe that what they believe to be confidential is held confidential, and not shared. But also for me to have confidence in health care systems, I have to believe that leaders in health care systems will make decisions for the greater good of people, right? (Participant 18–032, patient) Health data v. other data It’s a privilege to be told this information — patients don’t even tell their family what they tell us (Participant 18–054, provider)
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