Patient-Centered Design as a research strategy

for cognitive assistive technology

Elliot ColeInstitute for Cognitive Prosthetics

CHI Cognitive Technologies WorkshopApril 22-3, 2006

• Video– Originally intended to be therapist training

video showing the software customization process

– Patient was having a low-functioning day, and couldn’t do task

– When she remembers Christmas pictures, her level of functioning increases

– “but I don’t remember it”…..

A cognitive prosthesis

Video

What is a Cognitive Prosthesis

• Dramatically, palpably increases level of cognitive functioning– In weeks to months– In seconds

• Computer technology has unique capacities to help support people in their daily activities

• With the right fit, it can help activate the individual with cognitive disabilities

What is a cognitive prosthesis

• Designed for rehabilitation purposes• Uses computer technology, and perhaps other

technologies• Directly supports cognitively-based daily

activities• Highly customized to the needs of the individual

person– To make the individual effective in performing a task– User friendly to the patient– Does not provide unneeded features

• Collects data relevant to system and personal assessment

Contributing areas of CS

• Office automation– Personal support software– Workgroups– Process redesign, with technology as an actor

• CHI - uniquely• Research design

– Identifying the phenomenon– Sampling– measurement

• System evaluation – why systems fail– Working non-solutions

• End-user computing and user support (therapists, patients, caregivers)

CHI and designing for disabilities

• Most of the functionality of these applications are widely used

• It is the user interface that is the key difference in serving the disabilities areas.

• The UI requirements are far more demanding

Institute for Cognitive Prosthetics

• ~ 100 patients• 10,000’s of hours of therapy services• Most have had 6 months+ of intensive services• Mild to profound, and multiple deficits• Interdisciplinary staff

– CS, application development, delivery systems– Clinicians in many disciplines– Patients as key contributors

• Research fruits integrated quickly into services• A focus on delivery systems

A robust system From the user’s perspective

• Optimally increases an individual’s level of functioning

• Over the long haul

• For her/his priority activities

• As they reveal themselves over time

Task

Characteristics

User

Characteristics

Technology

Characteristics

Performance Measures•State to state transition time

•Work time per unit

•Length of productive working time

•Number of errors

•Ease of error recovery

•Training time per feature

•Training information remembered

•Stress

Software customization

Video

Process of prosthetic software use

Video

Mixing technology & paper

The paper component

Reading disabilities

Who are our users?

• People who cannot fully participate in life activities, developmental or acquired…

• …Because of Cognitive dysfunction

• Cognitive abilities are our stock in trade

Islands of deficits in seas of abilities:causes of unexpected activity failures

Islands of abilities in seas of deficits:Unexpected abilities that can be leveraged

Capturing the user’s characteristics: The user as a moving target

• Initial user model• Refinements to user model, correcting the initial

user model• The user’s increasing capabilities as a result of

the initial successes of the assistive technology• There is anecdotal evidence that the curve

continues upward slowly over the years.• Adjustments necessary for degenerative

conditions

The design space:A universe of 1

• Cognitive deficits• Cognitive abilities• Activities to be supported

– Priority activities

• Setting(s) where activities are performed• Parameters of the disease process• The individual’s support system• The individual’s learning & achievement curve

– Supportive compensation– Additional rehabilitation

Why be patient-centered

• It provides an environment for domain learning– What is the nature of the phenomena – Institutional structures and procedures– Design methodology considerations

• A focus on the patient’s perspective• A focus on patient priorities• A focus on patient design participation• Potential for hypothesis-testing in design

Validity of usability

• Useful and important in long-term use confirmed by usage data (for a broad range of activities)

• Useful and important in short term use confirmed by usage data and testimonial

• Useful but not very important in short term use• Useful and important in hi-fi mock-up is

hypothesized by cognitively impaired user• Useful and important in focus group

hypothesized by cognitively impaired users

Our users’ design capabilities

• Many of you have extensive experience designing with your users, and have written about some of the small-granularity abilities and deficits.

• Our users are often the most sensitive measurement instrument for interface design.

Complexities of technologies as compensatory and rehabilitative

• Initial compensation increases LOF

• Produces new opportunities for rehabilitation

• Brain plasticity as a cure

• What is the role of widely adopted technologies, e.g., calculator, spell check

Some methodological issues

Video

Research issues

• Models of cognition and cognitive functioning– Different disciplines– Different schools within a discipline– The issue of ecological validity– Levels of granularity

• Classification of activities

Research Issues

• Creativity of our users in using our tools

• Sampling issues

• 2 decades of resistance to the clinical use of AAC and cognitive AT (insurance companies had no problem in paying for CAT)

The importance of cognitive AT

• Interface design is THE issue• Provides an opportunity to explore tacit

assumptions in interface design• A unique sense of accomplishment• A unique view into brain functioning, with

potentially important research tools• Working with wonderful people• SIG CHI has been very receptive• An opportunity to help launch a research field