consumer perspective: understanding the end user @ fda bci workshop 2014

12
Consumer Perspective Understanding the end user Brain-Computer Interface Devices for People with Paralysis and Amputation, November 21, 2014

Upload: jennifer-french

Post on 24-Jul-2015

79 views

Category:

Technology


5 download

TRANSCRIPT

Page 1: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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

Page 2: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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.

Page 3: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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.

Page 4: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

FACES OF CONSUMERS FUNCTIONAL RESTORATION TODAY

Page 5: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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.

Page 6: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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

Page 7: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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.

Page 8: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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

Page 9: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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

Page 10: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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.

Page 11: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

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

Page 12: Consumer Perspective: Understanding the End User @ FDA BCI Workshop 2014

ARE WE ASKING THE RIGHT QUESTIONS?