including patients in healthcare
TRANSCRIPT
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
Outline
1.Clarification of terms
2.Inclusion in Diagnosis
3.Inclusion in Treatment
4.Inclusion in Research
5.Discussion
“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
Inclusion• Death penalty
• Extreme form of religious devotion
InclusionIncluses[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)
Inclusion
• Geology
http://www.iddfossils.co.uk/BUY-ONLINE-NOW/Amber-and-copal/Baltic-amber
Inclusion
• Social Pediatrics/Disability:
“Become an indispensable part of a whole”
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
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>
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
What do you see?
…and now?
…so?
kneeling female
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.
Mosaic
Mosaic
Mosaic
Body StructuresMobility
PreferencesFamily structure
Community supportsHousing
WorkAssistive Devices
GeographyClimate
Body FunctionsRoles
CommunicationLearningSelf-Help
Professional SupportsFriendsSchool
MedicationsSystems & Laws
https://flic.kr/p/4tpLGH
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
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
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
Diagnosis defining Identity• Traditional patient organizations:
➡ main goal: find a cure!, fight the disease!
• Online Communities:
➡ main goal: connect, support, help, inform
Including Patients in Treatment Decisions
• Treatments should cure or alleviate symptoms
• They should be tried and tested
• They should cause minimal undesired effects
Including Patients in Treatment Decisions
EBM Triad copryright 2013 Florida State University, College of Medicine. All rights reserved.
“Evidence Based Medicine”
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
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.
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
Technology as a Health Management Tool
(Ellen Weinstein for The Washington Post)
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?
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
Managing Treatment• the traditional dogma: “No treatment without a diagnosis!”
➡ Treatment needs to attack at the root of the problem (etiology)
➡ Linear thinking
Biomedical Model - linearcell
tissue
organ
body
disease
pathogen
Health
Drug or Therapy
Components of Health - non-linear
Body Functions & Structures
Activities Participation
Environmental Factors
Personal Factors
Health Condition
Components of Health - non-linear
Body Functions & Structures
Activities Participation
Environmental Factors
Personal Factors
Health Condition
Components of Health - non-linear
Body Functions & Structures
Activities Participation
Environmental Factors
Personal Factors
Health Condition
Components of Health - non-linear
Body Functions & Structures
Activities Participation
Environmental Factors
Personal Factors
Health Condition
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.
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!
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)
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
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
Why are Parents using the Group?
Information Sharing Raise Awareness Connect Emotional Support
Impact on Research
0
9
18
27
36
45
29
2219
35
27 28
(n = 40)
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
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.”
Patients Participating in Research• Creating a diverse research community:
• Patients, parents, caregivers, researchers
• Respect
• Communication
• Engagement - be “personable”
➡ Inclusion of all the participants
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.
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”.
Discussion - Questions
Thank you!
Presentation will be available on slideshare