This document discusses understanding the consumer perspective for brain-computer interface and neurotechnology devices. It notes that clinicians see patients as being desperate with no other options, but evidence shows consumers will discard devices that do not meet their personal expectations. The need for consumer education is highlighted through quotes from neurotechnology users. Considering benefit-risk assessments and human factors of technology interaction is also discussed to better target consumer priorities and recovery. Real stories from users emphasize combining data with human experience. The conclusion questions if the right questions are being asked of consumers for device development.

1. Consumer Perspective
Understanding the end user
Brain-Computer Interface Devices for People with Paralysis and Amputation,
November 21, 2014

2. Focusing
on
educa-on
of
and
advocacy
to
access
neurotechnology
devices,
therapies
and
treatments
for
people
living
with
impairments,
their
care-­‐givers
and
medical
professionals.
Free
Resources:
Ø Free
Condi-on
Educa-onal
Pages
Ø Network
of
Technology
Users
Ø Educa-onal
sessions/webinars
Ø Publica-ons
&
e-­‐NewsleGers
Ø Website/Social
Media
Helping people regain life thru neurotechnology
www.NeurotechNetwork.org
Neurotech Network and The Society to Increase Mobility, Inc. and its representatives do not rate, sell,
distribute, endorse, recommend or prescribe any products, procedures or services.

3. No other options?
Clinicians’ perceptions of their patients include:
§ […] in despair[..]
§ [...]exhausted other resources […]
§ […] don’t really have any other option[…]
§ […]all quite desperate[…]
Bell E, Maxwell B, McAndrews MP, Sadikot A, Racine E, Hope and
Patients’ Expectations in Deep Brain Stimulation: Healthcare Providers’
Perspectives and Approaches, Journal of Clinical Ethics, Summer 2010:
21(2): 112-124.

4. FACES OF CONSUMERS
FUNCTIONAL RESTORATION TODAY

5. What do people really want?
“In order to make devices that will actually be
used by the population for whom they are
intended, it is imperative to address the
priorities of that population”
- Hochberg LR, Anderson KD (2012) Chapter 19 “BCI Users and Their Needs”. In: Brain-
Computer Interfaces: Principles and Practices. Wolpaw J, Wolpaw L. Editors. Oxford University
Press.

6. Targeting Recovery, Priorities of the Spinal
Cord Injured Population
Anderson KD, Targeting recovery; priorities of the spinal cord injured
population. J Neurotrama. 2004 Oct: 21(10): 1371-83

7. What do people really want?
Shah SG, Robinson I, AlShawi S.’ Developing medical device
technologies from users' perspectives: a theoretical framework for
involving users in the development process.’Int J Technol Assess
Health Care. 2009 Oct;25(4):514-21.
Evidence shows that consumers will
quickly discard or not use devices that do
not fulfill their personal expectations, even
though clinical professionals may view the
consumer needs met.

8. The Need for Consumer Education
“My girlfriend read an
article in the paper” –
Jan Scheuermann, BCI
participant
“I was on a routine visit
to my doctor” – Ian
Burkhart, BCI
participant
“It was my girlfriend who
learned about the project.
She persisted until she
found the right connections”
– Cathy Hutchinson, BCI
participant

9. Benefit- Risk Assessment
“ (We) made it a point to
manage our
expectations.”
– Kim & Sean O’Shea,
retinal prosthesis
participant
“ We took time to
understand the risks and
talked with the kids.”
– Jan Scheuermann, BCI
participant
“I was convinced but it
took time to sway my
family and friends into
supporting me on this
journey.”
– Ian Burkhart, BCI
participant

10. Human Factors of Technology Interaction
“I think the future would be maybe going towards
thought control, where the person would just think,
and it would just go to the implant, and you would
be able to open and close your hand. That’s way,
way down the line. Thought control—that would be
kind of neat.”
– Jim Jatich, Quadriplegic, Bionic Pioneer
Quote from a 1993 interview with Scientific American.

11. Real People Real Stories
“She was now optimistic about the what the future
may hold for her” – Bionic Pioneers, Cathy
Hutchinson
“One Day (years from now), I’ll be able to
take it home…” – Ian Burkhart
“This was meant for me.” – Jan
Scheuermann
DATA + HUMAN EXPERIENCE

12. ARE WE ASKING THE
RIGHT QUESTIONS?