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Consumer Perspective
Understanding the end user
Brain-Computer Interface Devices for People with Paralysis and Amputation,...
Focusing	
  on	
  educa-on	
  of	
  and	
  
advocacy	
  to	
  access	
  neurotechnology	
  
devices,	
  therapies	
  and	
...
No other options?
Clinicians’ perceptions of their patients include:
§  […] in despair[..]
§  [...]exhausted other resou...
FACES OF CONSUMERS
FUNCTIONAL RESTORATION TODAY
What do people really want?
“In order to make devices that will actually be
used by the population for whom they are
inten...
Targeting Recovery, Priorities of the Spinal
Cord Injured Population
Anderson KD, Targeting recovery; priorities of the sp...
What do people really want?
Shah SG, Robinson I, AlShawi S.’ Developing medical device
technologies from users' perspectiv...
The Need for Consumer Education
“My girlfriend read an
article in the paper” –
Jan Scheuermann, BCI
participant
“I was on ...
Benefit- Risk Assessment
“ (We) made it a point to
manage our
expectations.”
– Kim & Sean O’Shea,
retinal prosthesis
parti...
Human Factors of Technology Interaction
“I think the future would be maybe going towards
thought control, where the person...
Real People Real Stories
“She was now optimistic about the what the future
may hold for her” – Bionic Pioneers, Cathy
Hutc...
ARE WE ASKING THE
RIGHT QUESTIONS?
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Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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Presented at the FDA Brain Computer Interface Workshop in November 2014, this presentation highlights in the needs of the consumer in areas of neuromodulation, neural prosthetics and brain computer interfaces

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Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

  1. 1. Consumer Perspective Understanding the end user Brain-Computer Interface Devices for People with Paralysis and Amputation, November 21, 2014
  2. 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. 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. 4. FACES OF CONSUMERS FUNCTIONAL RESTORATION TODAY
  5. 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. 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. 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. 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. 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. 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. 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. 12. ARE WE ASKING THE RIGHT QUESTIONS?

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