Presentation during the Workshop on Assistive Technologies for People with Disabilities: Patient Perspectives – 13/12/2021organized by the Multitouch Project: https://multitouch-itn.eu

1. The International Classification of Functioning,
Disability and Health:
ICF Principles forTechnology Development
“Functionomics”
Olaf Kraus de Camargo
@DevPeds
Workshop on AssistiveTechnologies for People with Disabilities:
Patient Perspectives – 13/12/2021

2. Outline
§ Basic terms
§ Models of Health
§ ICF
§ Technology, Health & Patient Perspectives
§ mICF – ICanFunction Platform
§ Q&A

3. Diagnosis
§ Is the ability to “tell apart” (dia = divide/part; gnosis = knowledge)
§ Relies on collecting information/facts (history, exams, tests)
§ Is a process where you develop hypotheses…
§ …and then try to confirm them (further tests, exams, further details
of history), ruling out all the non-relevant competing hypotheses
§ “I saw the angel in the marble and carved until I set him free”
(Michelangelo)
Diagnosing is like recognizing and revealing the sculpture in a rock
https://www.michelangelo.net/angel/
“Kneeling Angel” by Michelangelo

4. Disability § UN Convention: “Persons with disabilities
include those who have long-term physical,
mental, intellectual, or sensory impairments
which in interaction with various barriers may
hinder their full and effective participation in
society on an equal basis with others.”
§ MHADIE Consortium: “Disability is a
difficulty in functioning at the body, person, or
societal levels, in one or more life domains, as
experienced by an individual with a health
condition in interaction with contextual factors.”
Leonardi, M., Bickenbach, J., Ustun,T. B., Kostanjsek, N., Chatterji, S., & Consortium,
M. (2006).The definition of disability: what is in a name? Lancet, 368(9543), 1219-
1221. https://doi.org/10.1016/S0140-6736(06)69498-1

5. Health
§“There are remarkably few cures in medicine. …
Generally, once a disease strikes, it’s a story of
managing it.” (Eric Topol)
Topol, E. (2015).The PatientWill SeeYou Now -The Future of
Medicine is inYour Hands. NewYork, NY, USA: Basic Books.

6. Health
§ WHO: “Health is a state of complete physical, mental and social well-being
and not merely the absence of disease or infirmity.”
(https://www.who.int/about/governance/constitution)
§ Huber et al. : “the ability to adapt and to self manage.”
Huber, M., Knottnerus, J.A., Green, L., van der Horst, H., Jadad,
A. R., Kromhout, D., Leonard, B., Lorig, K., Loureiro, M. I., van
der Meer, J.W., Schnabel, P., Smith, R., van Weel, C., & Smid, H.
(2011). How should we define health? BMJ, 343, d4163.
https://doi.org/10.1136/bmj.d4163

7. Complexity
“Complexity arises at the intersection between
individual and her/his environment”

8. Complexity of Disability
v Individual:
§Multiple impairments
§severe/profound intellectual
impairment
§Coexisting mental health issues
§Significant health conditions
§Behaviours of harm, alcohol and/or
drug misuse
§Experiences of trauma or neglect
v Environment
§ Socioeconomic disadvantage
§ Social isolation
§ Lack of service coordination
§ Lack of cross-sector collaboration

9. Disability & Functioning
Diagnoses: "He-Who-Must-Not-Be-Named"
Disability: is an experience
All people can find themselves in disabling life situations (“Disability” is
a relative term)
Disability can be prevented (in relative terms)
The relations between Disability and Functioning are complex
https://www.pinterest.ca/pin/577727458422035747/
Describing Functioning is like creating a mosaic

10. Managing Treatment
§ the traditional dogma: “No treatment without a diagnosis!”
Treatment needs to attack at the root of the problem (etiology)
Linear thinking

11. Biomedical Model - linear
cell
tissue
organ
body
disease
p
a
t
h
o
g
e
n
Health
Drug or Therapy

12. Components of Health - non-linear
Body Functions &
Structures
Activities Participation
Environmental Factors Personal Factors
Health Condition

13. ICF Framework
Body Structure &
Function
Activities
Participation
Environment
Personal Factors
Body Functions: The physiological functions of body systems (including psychological functions)
Body Structures: Anatomical parts of the body such as organs, limbs, and their components
Activities: The execution of a task or action by an individual.
Participation: Involvement in a life situation
Environmental factors: The physical, social and attitudinal environment in which people live and conduct
their lives; these are either barriers to or facilitators of the person’s functioning
Personal Factors: Internal personal factors which can include gender, age, education, profession, past and
current experience, character and other factors that influence how disability is experienced by the individual
World Health Organization. (2001). International classification of functioning, disability
and health : ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407

14. Components of Health - non-linear
Body Functions &
Structures
Activities Participation
Environmental Factors Personal Factors
Health Condition

15. Components of Health - non-linear
Body Functions &
Structures
Activities Participation
Environmental Factors Personal Factors
Health Condition

16. Components of Health - non-linear
Body Functions &
Structures
Activities Participation
Environmental Factors Personal Factors
Health Condition

17. International Classification of Functioning,
Disability and Health - a non-linear model
Body Functions &
Structures
Activities Participation
Environmental Factors Personal Factors
Health Condition
World Health Organization. (2001). International Classification of Functioning,
Disability and Health: ICF. Geneva, Switzerland:World Health Organization.

18. Mosaic of Complexity:
Health Condition
(e.g., CP,ASD)
Body Structures
and Functions Activities Participation
Environmental
Factors
Personal
Factors
The ICF
World Health Organization. (2001). International classification of functioning, disability
and health : ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407

19. Treatment Decisions in a Non-linear
Model
§ Need to take into account the Diagnosis (Health Condition) - but not
exclusively!
§ Depend on the Environmental Factors (Barriers and Facilitators)
§ Have to address the individual cultural, personal and spiritual preferences of
the patient (Personal Factors)
Require inclusion of the patient!

20. Including Patients inTreatment Decisions
EBM Triad copryright 2013 Florida State University, College of Medicine.
All rights reserved.
“Evidence Based Medicine”

21. Including Patients inTreatment Decisions
§ “Existing evidence indicates that rehabilitation clinicians rarely identify and agree
clear goals with their clients, and that many of the barriers to this relate to
clinicians’ beliefs about goal setting” (Niina Kolehmainen)
Kolehmainen, N. et al. (2012). Using shared goal setting to improve access and equity: a
mixed methods study of the Good Goals intervention in children’s occupational therapy.
Implement Sci, 7, 76. doi:10.1186/1748-5908-7-76

22. Shared-Decision Making
http://www.ebbp.org/ebbp.html

23. Health & Functioning
§ Health is ‘the ability to adapt and self-manage in the face of social,
physical and emotional challenges’ (Huber et al. 2011).
§ In other words, functioning (however it is done, regardless of
ability/disability) can be understood as the evidence of health.
Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ
2011; 343: d4163.

24. Technology as a Health ManagementTool
(Ellen Weinstein for The Washington Post)

25. Technology as a Health ManagementTool
§ Who has ever googled about a health condition?
§ Who is on Social Media?
§ Who is part of an Online Health Community?

26. Technology
§ Doctor-Patient Relationship: “The willingness to accept technology is
going to have an ever-increasing role, and we’re not going to lose the
patient bond but we’re going to remodel it and make it better” (Eric
Topol)
EricTopol in Levingston, S.A. (2014). How is the doctor-patient relationship
changing? It’s going electronic. -TheWashington Post. Retrieved April 30, 2015, from
http://www.washingtonpost.com/national/health-science/how-is-the-doctor-patient-
relationship-changing-its-going-electronic/2015/04/27/a560fb60-cc18-11e4-8c54-
ffb5ba6f2f69_story.html

27. ICF Data
https://apps.who.int/classifications/icfbrowser/

28. ICF Data
https://apps.who.int/classifications/icfbrowser/

29. Measuring Functioning

30. Measuring Functioning
Thompson SV., Cech DJ, Cahill SM, Krzak JJ. Linking the Pediatric Evaluation of Disability Inventory-Computer Adaptive
Test (PEDI-CAT) to the International Classification of Function. Pediatr Phys Ther. 2018;30(2):113–8.

31. Spectra of Functioning
ASD FASD
BF
A&P
EF-Barriers
BS
Xu A, Moore C, Kraus de Camargo O. Comparing the Spectra of Functioning in Children with FASD and ASD. In:WHO - Family of
International Classifications Network Annual Meeting.World Health Organization; 2020. p. 401. DOI: 10.13140/RG.2.2.26358.83524

32. Functionomics
• Description of a
person’s functioning
characteristics
(profile, cluster)
• Person-driven
• Includes the specific
environmental
characteristics of
this person’s context

33. mICF - ICanFunction
§ VISION:
§ integrate the functioning of a person using a digitally accessible interface,
providing users with the possibility of sharing their lived experience, including
relevant barriers and facilitators in their own words.
§ APPROACH:
§ Collaborative of Researchers,Technology Developers, Entrepreneurs and
Patient Representatives (31 partners from 13 countries)
§ Develop a common platform based on the ICF that allows them to share
what matters in their lives and allows professionals to capture these concerns
and integrate them in an interdisciplinary and interprofessional approach that
can encompass all the systems of care required.
https://icfmobile.org

34. Platform Structure

35. Dataflow
Function
Mapper
Various frontend designs
and applications
Patients
First
Interoperability layer
Health Databank
for Big Data analysis
External
points
of
service

36. FunctionMapper

37. Data translation

38. Data translation

39. Dataflow
Function
Mapper
Various frontend designs
and applications
Patients
First
Interoperability layer
Health Databank
for Big Data analysis
External
points
of
service

40. FireDiabetes
§ Journey of 40 days
§ Participants share a variety of functioning data over this time
§ Receive individualized feedback from an interprofessional team
§ Data analysis allows to understand user needs and inform design of
frontend
https://firediabetes.com

41. FireDiabetes
https://firediabetes.com
By providing a variety of
information to the participants
and engaging with them directly
about the things that matter to
them, a much richer view of
their needs is possible

42. Glimpse technology

43. Administrative Structure

44. Q & A Session
Q A
&
ThankYou!