Social determinants of health and patient experience Flashcards
Patient-Oriented Research
Traditional “extractive” model of research - how involved were participants? (6)
- Research team determines research topic and method
- Interactions between researchers and participants happen on researcher’s terms (in space, in time, in content)
- Participants are seen as data sources to be “mined”
- One-time monetary compensation
- No mechanisms to return knowledge to communities
- Results are published in closed-access academic journals
Where can patients be involve in the research process?
- Research is carried out to patients (to evaluate)
- Eventual product/intervention is evaluated
Perceived barriers to including persons with lived experience in research (4)
- Resource-intensive
- What if patients shift research agenda away from original purpose?
- Lack of supportive infrastructure & research culture
- Fear of tokenism
Ethical
Arguments for patient* engagement in research
“nothing about me, without me”
For researchers, increases… (3)
Arguments for patient* engagement in research
- Enrolment and retention
- Understanding and insight into research area; rapport with community
- Alignment of research objectives with patient priorities
Improves… (5)
Arguments for patient* engagement in research
- data collection tools
- dissemination of study findings and mobilization of findings
- Trust between researcher and patient
- Quality of care in context of research priority setting
- Patient involvement in decision-making, organization of care
For patients, develops… (2)
Arguments for patient* engagement in research
- Own voice and agenda, experience as a collaborator
- Feeling of empowerment, value, confidence, life skills
Models of patient engagement
Arguments for patient* engagement in research
Long-term advisors (few or many; separate or as a board)
* Surveys
* Interviews
* Focus groups
Brain Health & Palliative Care
Palliative care
philosophy of care that improves the quality of life for a person
Social Determinants of Health
Most research on neurological disorders focuses on… (4 examples)
- Biomarkers
- Genetics
- Drug A vs Drug B
- Optimal, timing, dose, type of rehab
5 social determinants of health
- Education access and quality
- Economic stability
- Social and community context
- Health care access and quality
- Neighborhood and built environment
SDoH increase risk for neurological disorders example
Varied risk factors for cognitive decline & dementia
Levels of experienced discrimination
SDoH interact with treatment access & outcomes
Experiences of discrimination > stress, hypertension, diabetes > higher risk of stroke
Public education
SDoH interact with treatment access & outcomes
Less likely to have received public health education about the acute signs of stroke
Neighbourhood segregation leads to
SDoH interact with treatment access & outcomes
Higher neighbourhood segregation > differential health services available > wait longer to see HCP
Toxicology screening
SDoH interact with treatment access & outcomes
More likely to receive a toxicology screen when presenting to hospital with stroke
TBI in Indigenous Canadians
SDoH interact with treatment access & outcomes
- Road conditions on reserve (unpaved, poorly maintained, remote) > TBI risk
- Intergenerational trauma > intimate partner violence > TBI risk
- Lack of access to culturally appropriate health care
- Well-founded distrust of “help” from settlers
Cultural factors can influence neurorehabilitation
- How patients view their condition and what kind of treatment will help
- Mismatch
- Treatments offered/available
Cultural Factors Example: Indigenous views of Dementia
- A normal part of the “circle of life
- Caregiving is supported by cultural values of interdependence and reciprocity
What kind of rehab might be culturally appropriate for Indigenous communities?
- Attention to spiritual health as part of overall wellness
- Active role for injured person
- Shared decision-making
- Individualized traditional healing practices
- Learning to “live well” vs. fixing problems
- Incorporation of traditional healers in the health care system
