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Reviewer, Post-Sepsis Syndrome Informational Pamphlet

Posted • Last updated

Closed

Commitment: Long-term

Connection method: Virtual

Open to Provincial Region, patient partners from rural and remote areas

Last updated

Volunteer Opportunity
Recognizing and diagnosing sepsis in rural and remote communities through better information saves lives. Action on Sepsis are looking for two sepsis survivors or caregivers of sepsis survivors to help develop resources that will provide patients and healthcare providers information on post-sepsis syndrome.

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Lead Organization/Department
Action on Sepsis Research Cluster – University of British Columbia

Aim
• To increase health care providers, patients, and caregiver’s recognition of post sepsis-syndrome and enhance access to relevant existing resources and programs that can support high-quality follow-up care, starting with an information pamphlet.
• Patient partners will be asked to meet with us virtually for 30 minute to 1 hour to discuss the long-term impacts of sepsis and their experiences with seeking follow-up care after being treated for sepsis to ensure the pamphlet reflects what matters to patients.

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
Open to rural and remote patient partners across the province who are:
• An adult with lived experience as a sepsis survivor or as a caretaker of an adult sepsis patient. Sepsis survivors can participate whether they or their have experienced long-term impacts from their sepsis experience.
• Comfortable using email for correspondence and a virtual platform.
• Confident sharing their story.

If you have a strong interest in this work but have not yet completed a PVN orientation and Patient Partner Commitment, are unsure if your experience is a good fit, please contact Jami Brown directly.

Logistics
• Number of vacancies: 2
• Date/Time: To be determined with patient partners.
• Location: Virtual – platform will be determined based on comfort level of Patient Partner.
• Commitment: One – 30 minutes to one hour meeting.

Reimbursement
No out-of-pocket expenses are anticipated for this engagement opportunity. However, if you meet the eligibility criteria, but have concerns about your ability to participate, please contact Jami Brown- jbrown@bcpsqc.ca to see if support options are available. We are always seeking to better understand and reduce barriers to participation.

Background
Many knowledge gaps still exist between evidence and clinical practice, leaving sepsis survivors without long-term support. As an initial step towards decreasing the gap in post-discharge care for post-sepsis syndrome, our Patient Advisor Council worked with the BC Sepsis Network to develop a draft pamphlet on post-sepsis syndrome. We are seeking from feedback from additional patient partners to ensure the pamphlet appropriately address the needs of sepsis survivors with diverse experiences, including rural and remote communities. This is most directly related to hospital settings, although one aim of this engagement will be to identify the most appropriate care setting where this pamphlet can be provided to patients. This pamphlet will be made available online as an educational material provided to patients by our provincial health authorities, starting with Vancouver Coastal Health.

The primary risk is that painful memories could be triggered when patients or their caregivers share their experiences with us. In the past, we have used peer support to help mitigate this. One of our Patient Advisory Council members, who are also sepsis survivors, will be present at all meetings. Further, we will have information on resources/programs they can reach out to for further informational and peer support readily available to share following the interviews.

The Action on Sepsis Research Cluster at the University of British Columbia and BC Children’s Hospital is a group of clinicians, researchers, public end users, and health care policymakers committed to reducing the burden of sepsis globally. Improving our understanding of and long-term care for sepsis survivors is a priority for our team.

Engagement Leader Contact Information

Jami Brown | BA, MAPC (she/her/hers)
Engagement Leader
BC Patient Safety & Quality Council
604.510.0449
jbrown@bcpsqc.ca

From Our Community

Layton Engwer

Patient Partner, Sooke

Layton Engwer

PVN helped empower me to make meaningful contributions to Primary Care (PC) locally and provincially.  It also facilitated creation of PC Patient Voices which is focused on PC and provides education support and building on shared experiences.