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Because your voice matters.

Document Reviewer, Patient Resources on Transitioning to Conservative Care for Kidney Disease

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Open to Provincial Region, Patient partners across the province

Last updated

BC Renal is looking for patients and caregivers to provide feedback on resources for patients who have chosen not to pursue a kidney transplant or dialysis. We would love to hear from you to have patients inform resources for conservative care!

Open to: Patient partners across the province

Lead Organization or Department

BC Renal, Palliative Care Committee

Aim

To develop new resources for patients with kidney disease who might be transitioning to conservative care in BC. Patient partners will review and provide feedback to ensure language is clear and patient friendly.

Level of Engagement

This opportunity is at the level of consult on the spectrum of engagement. The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility

  • Patients or family members with lived experience of chronic kidney disease
  • Participant selection will take into consideration diversity (e.g. age, gender, level of education, lived experience of dialysis, geographical, ethnicity) to ensure participants reflect the population of our province
  • Must have access to a computer and comfort using word processing software
If you have a strong interest in this work but have not yet completed a PVN orientation and volunteer agreement, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact the engagement leader directly.

Logistics

  • Vacancies: 10
  • The project manager will communicate with patient reviewers by email or phone call. If meetings are required, scheduling will be flexible based on the reviewer's schedule.

Reimbursement

No expenses anticipated.

Background

Some patients with chronic kidney disease decide not to pursue either transplant surgery or dialysis. This is called conservative care. For this work, we hope to hear feedback from patients and families living with chronic kidney disease, to review the patient resources developed by the working group related to transitioning to conservative care. It is preferred that we hear from patients who are currently receiving care at a Kidney Care Clinic. This work is part of an initiative to develop and implement a provincial strategy to effectively integrate a palliative approach for all patients with chronic kidney disease. Specifically, it is important to understand and provide information on what patients need to know about transitioning to end of life, including what steps need to be involved in this process. A working group of patients, families, kidney care professionals, First Nations Health Authority representatives and palliative care specialists will develop resources for this initiative to be further reviewed. Broader input will help ensure the resources are relevant and useful for those living with kidney disease from various backgrounds.

Engagement Leader Contact Information

Kathryn Proudfoot
Engagement Leader, Patient & Public Engagement | Provincial
604.668.8246
kproudfoot@bcpsqc.ca

Karen Estrin
Engagement Leader, Patient and Public Engagement | Lower Mainland & Sunshine Coast
604.668.8245
kestrin@bcpsqc.ca

From Our Community

Agnes Black

Director, Health Services & Clinical Research and Knowledge Translation – Providence Health Care

Agnes Black

It’s really hard to make changes in health care. When a PVN patient partner says, ‘This is important to us’ it keeps us grounded on why a change is needed and keeps us motivated to keep going on projects.