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Reinventing Normal: Technologies for Empowerment
Michelle A. Meade, Ph.D.Associate Professor
Physical Medicine & RehabilitationUniversity of Michigan
DISCLOSURES• The presenter, Dr. Michelle Meade, discloses the following
activities and sources of support– Co-inventor of SCI HARD app described in this presentation, Invention Report File #
6349 - Mobile Game for Health Interventions and Behavioral Change– Consultant with the Medical University of South Carolina to assist with grant-funded
research activities– Editorial Board member for the journal Topics of Spinal Cord Injury Rehabilitation– Executive Committee for the Psychologist and Social Worker Section of the Academy
of Spinal Cord Injury Professionals– PI or Co-PI of grants from the National Institute of Disability and Rehabilitation
Research and
• Commercial Support was not received for this activity.• Funding Agency
• The RERC is funded by Grant # 90RE5012 from the National Institute on Disability Independent Living and Rehabilitation Research (NIDILRR)
OBJECTIVES • Provide a conceptualization of disability amd the
role of fixed versus modifiable factors
• Discuss how technology is a modifiable factors which can be leveraged to address disparities and improve lives
• Discuss the TIKTOC RERC and small grants program
HOW DISABILITY IS OFTEN SEEN…
HOW IT MAY BE VIEWED…
DEFINING DISABILITY: THE ICFINTERNATIONAL CLASSIFICATION OF FUNCTIONING,
DISABILITY AND HEALTH (WHO; 2001)
IDENTIFYING RELEVANT FACTORS
• Fixed factors• Modifiable factors• Factors based on Interactions
• Personal Factors▪ Gender▪ Race▪ Age▪ Past history▪ Body structure / impairment
▪ Executive dysfunction
FIXED FACTORS• Environmental Factors▪ Natural environment, including climate
▪ Geography
• Personal▪ Education▪ Insurance coverage /
Access to care▪ Attitudes and beliefs▪ Behaviors▪ Health literacy▪ Psychological
characteristics▪ Skills / experience
MODIFIABLE FACTORS• Environmental
▪ Products and technology
▪ Human-made changes to environment
▪ Support and relationships
▪ Attitudes▪ Services, systems, and
policies▪ Access to Health Care▪ Quality of Health Care
TECHNOLOGY AS ONE FACTOR
THAT MAY BE OPTIMIZED
Home environment• Accessibility of home • Smart Homes• Smart Bathrooms• Monitors and tracking
systems• Videos and reminder
systems
• Transportation
• For Mobility & Managing Environmento Wheelchairs and other DME
o Exoskeletons
• For Managing the Environment• Eye gaze and voice activated systems
• For communicating • Augmentative and Alternative Communication
• Hearing Aids
• Visual aids and supports
ASSISTIVE DEVICES
• M-Health: using mobile devices, such as mobile phones, tablets, and smartphones, in medicine and public health
• E-health: broader term for the use of all electronic technologies such as computers in medicine and public health”
– Apps
– Web-based self-management programs
– Games
– Wireless Sensors and monitors
– Reminding systems (alarms, texts, watches, etc)
– Calendars and systems for organizing time, information, commitment Organizational systems
E-HEALTH AND M-HEALTH
FORMAT OF INTERVENTIONS
• Tailor based on▪ Education▪ Age / developmental stage▪ Executive functioning /
cognitive ability▪ Gender▪ Race / ethnicity▪ Role ▪ Purpose of learning▪ Time▪ Preferred learning
style
• Multiple Methods of providing education and skill Development▪ Handouts▪ Videos▪ Games and Gamification▪ Gamification of interventions
for teenagers▪ Culturally specific
interventions / programs that leverage the strengths of target groups
Mobile Technology to Facilitate Health and Independence
among Adolescents & Young Adults with Disabilities:
Overview of the Technology Increasing Knowledge: Technology
Optimizing Choice (TIKTOC)Rehabilitation Engineering Research Center
• Funded by the NIDLIRR in the ACL, Dept of HHS
• Centers designed to carry out research or demonstration activities by:– Developing and disseminating innovative methods of applying advanced technology, scientific achievement, and psychological and social
knowledge to (1) solve rehabilitation problems and remove environmental barriers, and (2) study new or emerging technologies, products, or environments;
– Demonstrating and disseminating (1) innovative models for the delivery of cost-effective rehabilitation technology services to rural and urban areas, and (2) other scientific research to assist in meeting the employment and independent living needs of individuals with severe disabilities; or
– Facilitating service delivery systems change through (1) the development, evaluation, and dissemination of consumer-responsive and individual and family-centered innovative models for the delivery to both rural and urban areas of innovative cost-effective rehabilitation technology services, and (2) other scientific research to assist in meeting the employment and independent needs of individuals with severe disabilities.
• Provide training opportunities to individuals, including individuals with disabilities, to become researchers of rehabilitation technology and practitioners of rehabilitation technology in conjunction with institutions of higher education and nonprofit organizations.
• Work at the individual level focusing on technology to lessen the effects of sensory loss, mobility impairment, chronic pain, and communications difficulties.
• Work at the systems level in such areas as eliminating barriers to fully accessible transportation, communications, and housing.
• Partnering with industry, product developers, private sector entrepreneurs and even hobbyists, the RERCs embody the potential to make sweeping changes affecting public policy and the nature of the built and virtual environments.
REHABILITATION ENGINEERING RESEARCH CENTERS
15 RERCs• Rehabilitation Engineering Research Center for Wireless Inclusive
Technologies.
– Georgia Institute of Technology
• Rehabilitation Engineering Research Center: Develop and Evaluate Rehabilitation Technology and Methods for Individuals with Low Vision, Blindness, and Multiple Disabilities;
– The Smith-Kettlewell Eye Research Institute, San Francisco, CA.
• Rehabilitation Engineering Research Center on Universal Interface and Information Technology Access.
– University of Maryland, College Park., Trace Research and Development Center
• Rehabilitation Engineering Research Center on Wearable Robots for Independent Living.
– New Jersey Institute of Technology Newark, NJ.
• RERC on Universal Design and the Built Environment.
– University at Buffalo|The State University of New York.School of Architecture and Planning.
• LiveWell - The Information and Communication Technology Rehabilitation Engineering Research Center for Community Living, Health, and Function.
– Duke University and Georgia Institute of Technology
• Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (The RERC on AAC).
– The Pennsylvania State University
• Rehabilitation Engineering Research Center (RERC): From Cloud to Smartphone – Accessible and Empowering ICT.
– University of Pittsburgh
• Rehabilitation Engineering Research Center for Advancing Cognitive Technologies (RERC-ACT).- University of Colorado Denver Health Sciences Center.
• RERC on Improving the Accessibility, Usability, and Performance of Technology for Individuals who are Deaf or Hard of Hearing (DHH-RERC).- Gallaudet University
• Rehabilitation Engineering Research Center on Physical Access and Transportation.- Pittsburgh, PA.
• Technology Increasing Knowledge: Technology Optimizing Choice (TIKTOC) Rehabilitation Engineering Research Center (RERC).- University of Michigan
• Rehabilitation Engineering Research Center on Timing Investigation Dosage Implementation (TIDI).- Rehabilitation Institute of Chicago (RIC) / Shirley Ryan AbilityLab
• Rehabilitation Engineering Research Center on Technologies to Support Successful Aging with Disability (RERC TechSAge).- Georgia Tech Research Corporation
• Technologies to Evaluate and Advance Mobility and Manipulation (TEAMM) Rehabilitation Engineering Research Center; RIC / Shirley Ryan AbilityLab
INCREASING KNOWLEDGE – OPTIMIZING CHOICE
• Focused around facilitating the independent management of health among transition-age adolescents and young adults with physical, cognitive and neurodevelopmental disabilities through: – the development of new technologically-based interventions, as well the adaptation of existing
programs, interventions and protocols, that are tailored to the specific needs, strengths, abilities and personal characteristics of rehabilitation populations and
– the integration and use of those interventions within existing health care practices and systems
• Includes a coordinated set of research, development, capacity building and knowledge translation projects built around theories of self-management and behavioral change and focused on promoting health , increasing functioning, independence and participation, and preventing secondary conditions
NEED AND TARGET POPULATION• Adolescents and Young Adults with
disabilities• Transitioning to self-management of
health• Transitioning to independence and
adulthood• Individuals with congenital and
acquired disabilities– Physical– Cognitive– Neurodevelopmental
Research Project 1: Characterizing the Cognitive and Motivational Contributions to Health Self-Management of
Adolescents and Young Adults with Congenital Neurodevelopmental Conditions
INVESTIGATORSSeth Warschausky, Ph.D.
Director, Division of Rehabilitation Psychology and Neuropsychology (RPN)
Jacqueline Kaufman, Ph.D.Adapted Cognitive Assessment Laboratory Director;
Training Director, RPN Clinical Postdoctoral Fellowship
Edward Hurvitz, M.D.Professor; Chair, Department of Physical Medicine and Rehabilitation
BACKGROUND, AIM AND OUTCOME• For youth with disabilities, the transition to adult independence frequently
includes learning to manage atypical health care needs.
• The complexity of meeting personal health needs can be confounded by needs associated with motor impairments, neuropsychological impairments including lower intellect, and executive dysfunction.
• Research has shown generally lower mastery motivation in people with disability. Higher mastery motivation has been associated with fewer activity limitations.
• Thus, development of health self-management is likely to be affected by multiple factors including cognition and motivation.
• Specific Aim: To examine motivation and executive functions as predictors of health self-management in persons with congenital neurodevelopmental conditions
• Results highlight the importance of Executive Functioning Skills, as well motivation in being able to independently manage health
Research Project 2: Evaluating the Effectiveness of a Serious
Game to Enhance Self-Management Skills among Adolescents and Young Adults with
Spinal Cord Dysfunction
Michelle A. Meade, PhD, Principal InvestigatorEric Maslowski, Technical Director
Brad Trumpower, Project CoordinatorJoanna Jennie, Recruitment & Outreach Coordinator
R2: OBJECTIVES & ASSUMPTIONSRandomized Clinical Trial of a serious game developed to enhance self-management ability among adolescents and young adults with spinal cord dysfunction
– Challenges Targeted• Performance of complicated and ongoing health management
behaviors• Communication and collaboration with health care providers• Development of self-monitoring, problem-solving, organization &
other health management skills– Assumptions about Target Population
• Electronic games as mediums for both education and entertainment• Able to multi-task but limited attention span for non-engaging
activities• Need to test boundaries
DEVELOPMENT PROJECT 1 (D1)
Activity Importance Measure – Digital (AIM-D)
Charles Merbitz (PI), Consultant
Nancy Hansen Merbitz, Assistant Professor, Physical Medicine & Rehabilitation
D1 OBJECTIVES & ASSUMPTIONSThe development of an app for smart phones or tablets for people with disabilities to use in tracking progress toward personal goals. The app will provide user-friendly data entry and graphs. Can be a ‘self-help app’ and/or healthcare teams can integrate this tool into work with clients.
• Challenges Targeted• Empowering people to track and increase participation • Clinician training to help clients use this tool• Accessibility for people with limited hand use, sensory impairments, etc.
• Assumptions about people using the app:• Person is interested in increasing preferred activities of social
participation• Person’s goals are integrated into work with rehabilitation professionals,
e.g., OT, PT, SLP, Psychology, Nursing, Social Work, etc.
Investigators: Edmund Durfee, PhD, Professor of Engineering
(Project Director)Abigail Johnson, Assistant Professor of Physical Medicine &
RehabilitationLynn Garrett, Graduate Student, School of Engineering
Development Project 2:Developing Technology to
Improve Schedule Planning and Decision Making
D2: OBJECTIVE & ASSUMPTIONSThe development of a dynamic scheduling system based on state-of-the-art Artificial Intelligence (AI) techniques that augments human cognition to support the management of health and participation of young adults with disabilities.
Challenges targeted:• Inexperience at self-management; • Complex self-management problems;• Impact of management decisions on/from others (e.g.,
family members)
Assumptions about target population:• Significant cognitive abilities• Already motivated to participate in a variety of life activities
DEVELOPMENT PROJECT 3 (D3):SUPPORT FOR SPINAL CORD INJURY
SELF-MANAGEMENT THROUGHCONTINUOUSLY MEDIATED TAILORING
Mark W. Newman, PhD (Faculty Lead)School of Information & Electrical Engineering and Computer Science
Mark S. Ackerman, PhD (Faculty Lead)School of Information & Electrical Engineering and Computer Science
Ayse G. Buyuktur, PhD (Research Fellow)School of Information
Pei-Yao Hung, MSI (Doctoral Candidate)School of Information
D3: OBJECTIVE & ASSUMPTIONSThe development of a cloud-based mobile system for dynamic, personalized self-management plans, allowing continuous coordination among the adolescent or young adult with physical disability, clinical staff, and caregiver networks and providing each with different capabilities for viewing, updating, acting on, and reporting progress on the shared plans and related medical information
– Challenges Targeted:• Learning and prioritizing health management tasks • Health management regimen often complicated and may be context specific• Collaboration with health care providers
– Assumptions about target population• Individuals with SCI motivated to manage health• Working with patient population with few cognitive limitations• Health care providers have limited time
Development Project 4 (D4): M-MIND*
Medication Management among Individuals with Neurodevelopmental
Disabilities
Karen B. Farris, Ph.D., DirectorUniversity of Michigan College of Pharmacy
Other InvestigatorsSteve Erickson, Pharm.D. (Pharmacy)
John Piette, Ph.D. (Public Health)Larry An, M.D. (Medicine)
Satinder Singh, Ph.D. (Computer Science & Engineering)
BACKGROUND & OBJECTIVES• Children and young adults with neurodevelopmental conditions (NDCs) use numerous
medications
• Many children and young adults with NDC have higher risk than the general population for medication management needs such as organizing medications, cueing to take medications and assistance with monitoring for side effects.
• Range of medication management is from self-administration → reminders→ guided-administration → caregiver administration
• The capacity of young adults with NDCs to manage their medication and ways to improve medication self-management are poorly understood, and few interventions have been developed or tested.
• Objectives
– To create a portfolio of supportive interventions for young adults with NDCs and their caregivers.
– To adapt and test a visual and interactive application to assist young adults with NDCs and their caregivers in the transition process for medication self-management.
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SMALL GRANTS PROGRAM• Designed to encourage a focus on the needs of adolescents and young adults with
physical, cognitive, sensory and developmental disabilities
• Encourages the translation of application of existing projects and research to address these needs
• Funding projects to develop and / or evaluate of innovative technology to enhance outcomes associated with the health and function, community participation, and / or employment for adolescents and young adults with physical, cognitive, developmental and sensory disabilities.
– Projects can address any stage of the innovation process
• Available to anyone employed by the University of Michigan, including students, residents, fellows, staff, and faculty
• Funding of up to $10,000 for one-year period
• 5 grants available in the upcoming year
• Deadline for Submission is November 1, 2017
FUNDED SMALL GRANTS• Fall 2015
– Next Generation AFOs for the Next Generation: Quantified Performance for Enhanced Efficacy and Customized Design
– PI: Deema Totah (Advisor: Prof. Kira Barton)
• Spring 2016
– Using Social Media Activity to Measure Change within Individuals with Acquired Brain Injuries
– PI: Danielle Shapiro, PhD, Assistant Professor, Physical Medicine and Rehabilitation
• Fall 2016
– Assisting Physicians with Paralysis in Performing Patient Examinations
– PI: David Burke, PhD, Professor, Department of Human Genetics
• Disability is not a static or fixed classification or outcome
• Technology is one way to change outcomes
• However, technology has to be relevant and usable and should be tailored to the needs and strengths of the individual
IN SUMMARY
For more information about CTHI
Or
visit our website at
http://cthi.medicine.umich.edu
