Indigenous Patient Partners in Kidney Health Research. Mary Beaucage Helen Robinson-Settee

Transcription

1 Indigenous Patient Partners in Kidney Health Research Mary Beaucage Helen Robinson-Settee

2 Our stories Helen Robinson-Settee Co-Chair, Indigenous Peoples Engagement and Research Council Mary Beaucage Co-Chair, Patient Council 2

3 Can-SOLVE CKD Network A national network that brings together: kidney patients researchers health care providers policy-makers caregivers 3

4 Can-SOLVE CKD Network We are working to improve the kidney health of all Canadians through research 4

5 Our vision By 2020, all Canadians living with or at risk for kidney disease will experience the best possible care and health outcomes 5

6 Patient engagement Patients are at the heart of everything we do 6

7 Patient engagement Patients are partners in designing, executing, interpreting, and communicating research 7

8 Patient-oriented research Research questions are based on patient priorities Three years of discussions helped us understand what matters most 8

9 Research themes 18 research projects across 3 main themes Earlier diagnosis Better treatments Innovative care 9

10 Patient leadership Indigenous Peoples Engagement & Research Council 2 patient-led councils are at the heart of the network Patient Council 10

11 Patient Council 30+ members: Kidney patients Caregivers Donors Indigenous people Women and men All ages Urban, rural, remote Diverse backgrounds 11

12 Indigenous Peoples Engagement & Research Council IPERC supports collaboration grounded in traditional values and partnerships with Indigenous communities 12

13 Indigenous Peoples Engagement & Research Council 15+ members: Indigenous patients caregivers researchers community leaders 13

14 Kidney research through an Indigenous lens Kidney disease has a strong impact on the health of Indigenous communities 14

15 Kidney research through an Indigenous lens A national strategy to improve kidney health must include Indigenous peoples 15

16 Kidney research through an Indigenous lens IPERC is bringing Indigenous ways of knowing into health research 16

17 Kidney research through an Indigenous lens Creating a culturally safe space for Indigenous people to take part in research 17

18 Kidney research through an Indigenous lens Educating researchers and health care providers to work collaboratively and respectfully with Indigenous peoples 18

19 Towards cultural safety Our work will create a pathway from cultural awareness to cultural competency Awareness Humility Safety Competency 19

20 Elder ceremony protocols Recognition of Elders and traditional knowledge holders 20

21 Elder ceremony protocols Recognition that we are on Indigenous land Guidelines for respecting and honoring our host Indigenous communities 21

22 Ceremony Sharing circles Sharing of traditional dances and songs Blanket ceremonies Smudging Tobacco offering 22

23 Education Hosted a webinar on historical context for Indigenous health in Canada Network staff completing San yas training 23

24 Training We are developing a cultural safety training module for health researchers and policy/decision-makers 24

25 Truth and Reconciliation Our work supports TRC calls to action related to health 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 #19 TRC call to action #24 25

26 Indigenous voices transforming research IPERC guides research projects on respectful engagement of Indigenous communities 26

27 Indigenous voices transforming research Mary s story 27

28 Indigenous voices transforming research Helen s story 28

29 Improving Indigenous health through research ICARE Understanding kidney disease risk in youth with diabetes Initial study focused on 200 Indigenous youth in Manitoba & Northwestern Ontario Video: 29

30 Improving Indigenous health through research 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 30

31 Improving Indigenous health through research Improving knowledge of treatment options Partnering with Sask. Indigenous communities to create culturally appropriate education 31

32 The road ahead Complete training module and deliver to researchers Ongoing recruitment of patient partners Launch screening project in BC, AB, SK, MB, ON 32

33 The road ahead Working towards cultural safety in everything we do Bringing Indigenous ways of knowing into research Better kidney health for all Canadians 33

34 Thank you! Aahnii, Bozhoo, Merci, Wli Wni, Meegwetch, Mikwetc Tshinashkumitin, Qujannamiik, Nakurmiik, Ai, Welaliog, Niá : wen, Chiniskomiitin, Tiawenhk! 34

35 Thank you! Learn more & get involved: 35