Functionomics -The International Classification of Functioning, Disability and Health: ICF Principles for Technology Development
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The document outlines the principles of the International Classification of Functioning, Disability, and Health (ICF) and its implications for technology development, specifically in the context of assistive technologies for individuals with disabilities. It emphasizes the complexity of disability as an intersection between individuals and their environment and highlights the importance of personalized treatments and patient involvement in health decisions. Additionally, the document discusses functionomics and the ICanFunction platform, which aims to integrate personal functioning characteristics to improve health management and interdisciplinary collaboration.
Functionomics -The International Classification of Functioning, Disability and Health: ICF Principles for Technology Development
- 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
- 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
- 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
- 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
- 44. Q & A Session Q A & ThankYou!