5. Survey structure: Five clinical vignettes with three
questions per vignette.
Responses to the questions are on a Likert scale
(Strongly Disagree to Strongly Agree).
Participants are asked to evaluate the situation
(either pre-neuromodulation or post-
neuromodulation) about a hypothetical patient
with respect to aspects of autonomy, informed
consent, and privacy.
Public group: Amazon Mechanical Turk (MTurk)
participants
MTurk is a crowdsourcing website where users
can complete discrete on-demand tasks. MTurk
participants were randomized to complete either
the survey that included vignettes that focused
on pre-neuromodulation intervention scenarios
or post-neuromodulation intervention scenarios.
Provider group:
Qualtrics survey will be emailed to healthcare
providers affiliated with professional
organizations (American Neurological
Association, etc.).
Snowball sampling is encouraged for the provider
group to share the survey with other potential
participants who are healthcare providers.
6. Alfredo Gómez is a 27-year-old man that sustains a spinal cord injury, after which he becomes paralyzed and loses the ability
to speak. He is referred to a neurosurgeon, who suggests he undergo implantation of an experimental device that will decode
his speech. After implantation of the device, his speech is able to be decoded with 75% accuracy and a median of 15 words
per minute.
For the following statements, think about Alfredo as he is deciding whether he would like to continue this intervention.
(a) Alfredo should continue using the experimental device.
(b) Regardless of Alfredo’s decision, you would say that in this situation after the initial intervention, Alfredo is fully
informed and capable of making his decision to continue the intervention.
(c) Regardless of Alfredo’s decision, you would say that he is making his decision to continue the intervention consistent
with his personal values and identity.
Response options for each question:
Strongly Disagree Disagree Neither Agree or Disagree Agree Strongly Agree
7. Pre-Intervention
Mariusz Klowacki is an 84-year-old man with cognitive
impairment. He has been judged unable to make decisions
regarding his medical care, and he has no family nearby because
all his family members are in Poland. The physician recommends
to the court-appointed surrogate decision maker that Mariusz
receive an experimental device aimed at reducing his cognitive
impairment.
For the following statements, think about Mariusz as he is
deciding whether he would like to start this intervention.
(a) Mariusz should begin using the experimental device.
(b) Regardless of Mariusz’s decision, you would say that in this
situation prior to the intervention, Mariusz is fully informed
and capable of making his decision.
(c) Regardless of Mariusz’s decision, you would say that he is
making his decision consistent with his personal values and
identity.
Post-Intervention
Mariusz Klowacki is an 84-year-old man with cognitive impairment.
He has been judged unable to make decisions regarding his medical
care, and he has no family nearby because all his family members
are in Poland. The physician recommends to the court-appointed
surrogate decision maker that Mariusz receive an experimental
device aimed at reducing his cognitive impairment. After
implantation of the device, he remains cognitively impaired.
For the following statements, think about Mariusz as he is deciding
whether he would like to continue this intervention.
(a) Mariusz should continue using the experimental device.
(b) Regardless of Mariusz’s decision, you would say that in this
situation after the initial intervention, Mariusz is fully informed
and capable of making his decision to continue the
intervention.
(c) Regardless of Mariusz’s decision, you would say that he is
making his decision to continue the intervention consistent
with his personal values and identity.
