indigenous patient partners in kidney health...
TRANSCRIPT
Indigenous Patient Partners
in Kidney Health Research
Mary Beaucage
Helen Robinson-Settee
Our stories
2
Helen Robinson-Settee Co-Chair, Indigenous Peoples’ Engagement and Research Council
Mary Beaucage Co-Chair, Patient Council
A national network that
brings together:
• kidney patients
• researchers
• health care providers
• policy-makers
• caregivers
Can-SOLVE CKD Network
3
We are working to
improve the kidney
health of all Canadians
through research
Can-SOLVE CKD Network
4
By 2020, all Canadians
living with or at risk for
kidney disease will
experience the best
possible care and health
outcomes
Our vision
5
Patients are at the heart
of everything we do
Patient engagement
6
Patients are partners in
designing, executing,
interpreting, and
communicating research
Patient engagement
7
Research questions are
based on patient
priorities
Three years of discussions
helped us understand
what matters most
Patient-oriented research
8
18 research projects across 3 main themes
Research themes
9
Earlier diagnosis Better treatments Innovative care
2 patient-led councils are
at the heart of the network
Patient leadership
10
Indigenous Peoples’ Engagement & Research
Council
Patient Council
30+ members: • Kidney patients
• Caregivers
• Donors
• Indigenous people
• Women and men
• All ages
• Urban, rural, remote
• Diverse backgrounds
Patient Council
11
IPERC supports
collaboration grounded
in traditional values and
partnerships with
Indigenous communities
Indigenous Peoples’ Engagement & Research Council
12
15+ members:
• Indigenous patients
• caregivers
• researchers
• community leaders
Indigenous Peoples’ Engagement & Research Council
13
Kidney disease has a
strong impact on the
health of Indigenous
communities
Kidney research through an Indigenous lens
14
A national strategy to
improve kidney health
must include Indigenous
peoples
Kidney research through an Indigenous lens
15
IPERC is bringing
Indigenous ways of
knowing into health
research
Kidney research through an Indigenous lens
16
Creating a culturally
safe space for
Indigenous people to
take part in research
Kidney research through an Indigenous lens
17
Educating researchers
and health care
providers to work
collaboratively and
respectfully with
Indigenous peoples
Kidney research through an Indigenous lens
18
Our work will create
a pathway from
cultural awareness to
cultural competency
Towards cultural safety
19
Awareness Humility
Safety
Competency
Recognition of Elders
and traditional
knowledge holders
Elder ceremony protocols
20
Recognition that we are
on Indigenous land
Guidelines for respecting
and honoring our host
Indigenous communities
Elder ceremony protocols
21
• Sharing circles
• Sharing of traditional
dances and songs
• Blanket ceremonies
• Smudging
• Tobacco offering
Ceremony
22
Hosted a webinar on
historical context for
Indigenous health in Canada
• https://youtu.be/LCJfSDa3BFA
Network staff completing
San’yas training
• http://sanyas.ca
Education
23
We are developing a
cultural safety training
module for health
researchers and
policy/decision-makers
Training
24
Our work supports TRC calls to action related to health
Truth and Reconciliation
25
We acknowledge the impact of
historical traumas on Indigenous
health
We are working to close the gaps in health outcomes
between Indigenous and non-Indigenous
communities
We are developing cultural safety
training for research team members
TRC call to action #18 TRC call to action #24 TRC call to action #19
IPERC guides research projects
on respectful engagement of
Indigenous communities
Indigenous voices transforming research
26
Mary’s story
Indigenous voices transforming research
27
Helen’s story
Indigenous voices transforming research
28
ICARE • Understanding kidney disease
risk in youth with diabetes
• Initial study focused on 200 Indigenous youth in Manitoba & Northwestern Ontario
• Video: https://youtu.be/S9Xi0OZmMDI
Improving Indigenous health through research
29
Kidney Check
• Screening for diabetes and high blood pressure in Indigenous communities
• Launching in 5 provinces: BC, AB, SK, MB & ON
• Each person will receive a treatment plan tailored to their risk
Improving Indigenous health through research
30
Improving knowledge of
treatment options
• Partnering with Sask.
Indigenous communities
to create culturally
appropriate education
Improving Indigenous health through research
31
• Complete training module and deliver to
researchers
• Ongoing recruitment of patient partners
• Launch screening project in BC, AB, SK, MB, ON
The road ahead
32
• Working towards cultural safety in everything we do
• Bringing Indigenous ways of knowing into research
• Better kidney health for all Canadians
The road ahead
33
Aahnii, Bozhoo, Merci, Wli
Wni, Meegwetch, Mikwetc
Tshinashkumitin,
Qujannamiik, Nakurmiik, Ai,
Welaliog, Niá : wen,
Chiniskomiitin, Tiawenhk!
Thank you!
34
Learn more & get involved:
www.cansolveckd.ca
Thank you!
35