The terms “mainstreaming” and “inclusion” are frequently associated with educational settings or work placements. When we require the care of a health professional, we all are patients and often excluded from the direction of the process of care. The literal meaning of the word "patient" is to be passive. In a world of inclusion, empowerment and self-determination this role needs to change. The presentation discusses the consequences of this paradigm shift for the inclusion of patients in the areas of diagnostics, treatment/interventions and research.

1. Research Making
a Difference
www.canchild.ca
Including Patients in
Healthcare
Olaf Kraus de Camargo
@DevPeds
Pacific Rim International Conference on
Disability and Diversity - 2015

2. Outline
1.Clarification of terms
2.Inclusion in Diagnosis
3.Inclusion in Treatment
4.Inclusion in Research
5.Discussion

3. “patient”
able to accept or tolerate delays, problems, or suffering without
becoming annoyed or anxious.
"be patient, your time will come"
synonyms:
forbearing, uncomplaining, tolerant, resigned, stoical

4. Inclusion
• Death penalty
• Extreme form of religious devotion

5. Inclusion
Incluses[edit]
A particularly severe form of asceticism within Christianity is that of
incluses, who typically allowed themselves to be immured, and
subsisting on minimal food. For example, in the 4th century AD, one nun
named "Alexandra immured herself in a tomb for ten years with a tiny
aperture enabling her to receive meager provisions...Saint Jerome
(ca.340-420) spoke of one follower who spent his entire life in a cistern,
consuming no more than five figs a day” (Wikipedia:
http://en.wikipedia.org/wiki/Immurement#Incluses)

6. Inclusion
• Geology
http://www.iddfossils.co.uk/BUY-ONLINE-NOW/Amber-and-copal/Baltic-amber

7. Inclusion
• Social Pediatrics/Disability:
“Become an indispensable part of a whole”

8. Modern Health Care Systems
• “The structure of health-care systems reflects an underlying understanding
of health and disease in which acute episodes result in help-seeking, with
the expected outcome of a cure or death.” (Pascale Allotey)
• “The challenge for health-care systems is to explore and address the
implications of chronicity which capture the complexity of addressing
disease conditions—regardless of cause—characterised by long duration
and often slow progression.” (Pascale Allotey)
Allotey, P., Reidpath, D., Yasin, S., Chan, C., & Aikins, A. (2010). Rethinking health-
care systems: a focus on chronicity. Lancet. doi:10.1016/S0140- 6736(10)61856-9

9. Example
• Mental Health Diagnoses “…rather than being explanations are just
ways of categorising experiences based on what people tell
clinicians” (Anne Cooke)
Cooke, A. et al. Understanding psychosis and Schizophrenia - Why people sometimes
hear voices, believe things that others find strange, or appear out of touch with reality,
and what can help. (The British Psychological Society, 2014). at <www.bps.org.uk>

10. Diagnosis
• Is the ability to “tell apart” (dia = divide/part; gnosis = knowledge)
• relies on collecting information/facts (history, exams, tests)
• is a process where your first develop hypotheses
• and then confirm hypotheses (further tests, exams, further details of history)
• “I saw the angel in the marble and carved until I set him free” (Michelangelo)
➡ Making a diagnosis is like recognizing the sculpture in a rock

11. What do you see?

12. …and now?

13. …so?

14. kneeling female

15. Case Formulation - Functional Profile
• “Information used in case formulation includes symptoms relevant to
diagnosis as well as historical and contextual information that provides a
more complete understanding of the child’s life and his or her emotional and
behavioural problems.” (Katharina Manassis)
• A number of different points of view, different types of data and information
is brought together to build a complete picture.
➡ Case Formulation is similar to the process of recognizing the image
composed of all the tiny pieces of a mosaic
Manassis, K. (2014). Case Formulation with Children and
Adolescents (1st ed.). New York, NY, USA: The Guilford Press.

16. Mosaic

17. Mosaic

18. Mosaic

19. Body Structures
Mobility
Preferences
Family structure
Community supports
Housing
Work
Assistive Devices
Geography
Climate
Body Functions
Roles
Communication
Learning
Self-Help
Professional Supports
Friends
School
Medications
Systems & Laws
https://flic.kr/p/4tpLGH

20. Role of the Patient
• Asks and informs
• Chooses what to disclose and what to share
• Decides which issues have priority
• Needs to know if additional information might be relevant and why
➡ An included patient helps to shape the formulation and diagnosis

21. Exclusion by Diagnosis
McDowell, M., & O’Keeffe, M. (2012). Public services for children with special needs: discrimination by diagnosis? J
Paediatr Child Health, 48(1), 2–5. doi:10.1111/j.1440-1754.2011.02394.x

22. Diagnosis defining Identity
• “Identity”
• “idem” = the same
• Vertical X Horizontal Identity
(Andrew Solomon)
• Health conditions are
horizontal identities
• people look for people with similar
experiences
➡ to share
➡ to support
➡ to help
➡ to advocate
Solomon, A. (2012). Far From the Tree: Parents, Children and the Search for
Identity. Scribner. Retrieved from https://books.google.ca/books?id=-qTbb7djcOoC

23. Diagnosis defining Identity
• Traditional patient organizations:
➡ main goal: find a cure!, fight the disease!
• Online Communities:
➡ main goal: connect, support, help, inform

24. Including Patients in Treatment Decisions
• Treatments should cure or alleviate symptoms
• They should be tried and tested
• They should cause minimal undesired effects

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

26. Including Patients in Treatment 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

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

28. 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 Patient Will See You Now - The Future
of Medicine is in Your Hands. New York, NY, USA: Basic
Books.

29. How should we define health?
“ability to adapt and self-manage under diverse
social, physical and emotional challenges”
(Machtheld Huber)
Huber, M., Knottnerus, J. A., Green, L., van der Horst, H., Jadad,
A. R., Kromhout, D., … Smid, H. (2011). How should we define
health? Bmj, 343, d4163. doi:10.1136/bmj.d4163

30. Technology as a Health Management Tool
(Ellen Weinstein for The Washington Post)

31. Technology as a Health Management Tool
• Who has ever googled about a health condition?
• Who is on Social Media?
• Who is part of an Online Health Community?

32. Technology
• “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)
Eric Topol 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

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

34. Biomedical Model - linear
cell
tissu
e
organ
body
disease
Health
Drug or
Therapy

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

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

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

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

39. 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.

40. 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!

41. Patients Participating in Research
• Governmental initiatives to include patients in research:
➡ PCORI - Patient Centered Outcome Research Institute (http://www.pcori.org)
➡ SPOR - Strategy for Patient Oriented Research (http://www.cihr-
irsc.gc.ca/e/41204.html)

42. Patients Participating in Research
• CanChild Centre for Childhood Disability Research
• founded in 1989 and named “Neurodevelopmental Clinical Research
Unit” (NCRU)
• renamed in 1997 to “CanChild” by a parent (“children can do”,
“Canada”)
• KIT and YouthKIT (presented on Monday w/ Tram Nguyen, see
program) were initiated, developed and evaluated by and with parents
• 2014 - “Parents Participating in Research” Group

43. Patients Participating in Research Group
• secret Facebook group created by a parent
• functions as an advisory panel for CanChild Centre for Childhood
Disability Research
• has no fixed agenda or timetable
• topics can be brought up by any member
• continuous flow of thoughts, questions, information and discussions

44. Why are Parents using the
Group?
29
22
19
35
27 28
0
9
18
27
36
45
Information Sharing Raise Awareness Connect Emotional Support Impact on Research
(n = 40)

45. Quotes
• “I never realized that as a parent I could make a difference.
This group has given me the hope and proof that I can.”
• “And to have a safe place to write about things that I can't
talk to my normal circle of friends about.”
➡ 94% would recommend the group to other parents

46. Quotes
• “I was not aware of the impact of the daily struggles that
disabilities can have in the life of families. Many of the topics
brought up in the group have not been brought up in the
same way in clinical encounters”
• “I have also learned how eager and supportive families are
of research and how willing they are to provide feedback on
any issues.”

47. Patients Participating in Research
• Creating a diverse research community:
• Patients, parents, caregivers, researchers
• Respect
• Communication
• Engagement - be “personable”
➡ Inclusion of all the participants

48. Inclusion of Patients in Research
• “Being different and being judged for being different may crush some
people, but for others it might lead to heightened ability to question
things, to ask why, not to accept - in a nutshell, to become a natural
researcher” (Leslie Swartz)
Swartz, L. (2010). Able-Bodied - scenes from a curious life.
Cape Town, SA: Zebra Press.

49. Conclusion
• In a non-linear model of health (bio-psycho-social-spiritual model),
the diagnosis or health condition is only one aspect of importance for
care
• A formulation helps to understand the “bigger picture” or mosaic that
describes all components of health
• The inclusion of patients is necessary to establish such a formulation,
share the decisions about treatment and develop strategies for
“research that matters”.

50. Discussion - Questions

51. Thank you!
Presentation will be available on slideshare