Invited talk at the Joint Symposium of WFNR and ICF Education | Functioning science – The future of the biopsychosocial model and its impact on rehabilitation A description of the pathway towards a patient-driven ICF platform enabling users to share their lived experience.

1. Patient driven data and the
mICF – mobile ICF
‘Functionomics’
Olaf Kraus de Camargo
World Congress of Neurorehabilitation
Vienna, 14.12. – 17.12. 2022

2. Complexity
“Faced with unsustainable costs and enormous amounts of under-utilized
data, health care needs more efficient practices, research, and tools to
harness the full benefits of personal health and healthcare-related data.”
Chawla, N. V., & Davis, D. A. (2013). Bringing big data to personalized healthcare: a patient-
centered framework. Journal of general internal medicine, 28(3), 660-665.

3. Life is complex 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
Tone
ROM
Attention
B
a
l
a
n
c
e
Standing
Sitting
Walking
Eating
Dinner in
Restaurant
Attending
School
Playing
with
friends
Taking a
bus
Accessible
public
transport
Wheelchair
Software
Assistant
1
0
y
o
male
3rd
child
Loves
trains

4. Order to understand
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
Tone
ROM
Attention
B
a
l
a
n
c
e
Standing
Sitting
Walking
Eating
Dinner in
Restaurant
Attending
School
Playing
with
friends
T
a
k
i
n
g
a
b
u
s
Accessible
public
transport
Wheelchair
Software
Assistant
1
0
y
o
male
3 rd
child
Loves
trains

5. Non-linear Classification
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

6. Non-linear Classification
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

7. Treatment Decisions
§ 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!

8. Personalized Medicine
“The Precision Medicine Initiative (PMI) is an innovative approach to
developing a new model of health care that takes into account individual
differences in people’s genes, environments, and lifestyles.”
Sankar, P. L., & Parker, L. S. (2017). The Precision Medicine Initiative's All of Us Research
Program: an agenda for research on its ethical, legal, and social issues. Genet Med,
19(7), 743-750. https://doi.org/10.1038/gim.2016.183
“-omics”: genome, metabolome, microbiome, proteome

9. Evidence Based Medicine
Sackett, D. L., Rosenberg, W. M., Gray, J. A., Haynes, R. B., & Richardson, W. S. (1996). Evidence based
medicine: what it is and what it isn't. BMJ, 312(7023), 71-72. https://doi.org/10.1136/bmj.312.7023.71
“-omics”
“Functionomics”

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

11. Including Patients
“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

12. 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.

13. Technology
(Ellen Weinstein for The Washington Post)

14. Technology
§Who has ever googled about a health condition?
§Who is on Social Media?
§Who offers/uses tele-health services?

15. 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, 2014)
§ “Let’s not go back to ‘normal’!” (Peter Rosenbaum et al., 2021)
EricTopol in Levingston, S.A. (2014). How is the doctor-patient relationship changing? It’s going electronic. -The
Washington 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
Rosenbaum, P. L., Silva, M., & Camden, C. (2021). Let's not go back to 'normal'! lessons from COVID-19 for
professionals working in childhood disability. Disabil Rehabil, 43(7), 1022-1028.
https://doi.org/10.1080/09638288.2020.1862925

16. mICF - ICanFunction
§ VISION:
§ Capture 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

17. “Functionomics”
• Person-driven
• Describe a person’s functioning characteristics (profile,
cluster)
• Include the specific environmental characteristics of this
person’s context

18. 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

19. Platform Structure

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

21. FunctionMapper

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

23. Q & A Session
Q A
&
ThankYou!

24. Contact Us
canchild.ca
@canchild_ca
905.525.9140 x27850
facebook.com/canchild.ca
canchild@mcmaster.ca
Institute for Applied Health
Sciences, McMaster University
1400 Main Street W., Room 408
Hamilton, ON, Canada