Long COVID Patient Advisory Group (PAG-LC)

UAH/KEC Edmonton Post-COVID Clinic/Edmonton Zone Inter-Professional Outpatient Long COVID (IPOP) Clinic

Background

The Edmonton Zone IPOP Clinic (previously called the UAH/KEC Edmonton Post-COVID clinic) is an Alberta Health Services (AHS) funded clinic dedicated to the care of patients in the Edmonton zone with long COVID. As the condition of long COVID continues to evolve, the clinic and its patients, are increasingly asked to participate in many of the new research studies and projects that emerge. To help triage and ensure the clinic supports only studies that are relevant, sensitive to and reflective of the needs and priorities of long COVID patients, we are seeking interested patient partners with experience of long COVID to establish a Patient Advisory Group. A primary purpose of this group would be to help assess and determine those studies our clinic could support that are patient centred, and relevant and sensitive to the unique experiences and challenges that long COVID patients face.

Additionally, our clinic is dedicated to being responsive to the evolving needs of our patients and so members of the Patient Advisory Group would also be asked to help provide guidance on clinic policies and practices that may affect the delivery of care for long COVID patients in our clinic.

Roles and Responsibilities

Patient partners would be asked to join an online Patient Advisory Group and contribute to quarterly meetings of approximately 1.5 – 2 hours each. Training will be provided and there will be additional opportunities to contribute for those interested and available.

The Patient Advisory Group will provide feedback (this can be written, verbal or however the group decides) to:

  1. Review study protocols submitted by researchers interested in recruiting clinic patients for long COVID studies to ensure projects are:
    • Relevant, meaningful, and reflective of the priorities of diverse long COVID patients
    • Conducted in a manner that is sensitive to, and inclusive of, the unique experiences, needs and challenges of the long COVID community.
  1. To provide feedback through group discussions on clinic policies that pertain to the care of patients with long COVID in the face of evolving needs and public health challenges.
Time Commitment

This project aims to start as soon as possible. Scheduled online meetings will be 4 times per year and there will be additional opportunities to provide input if patient partners are interested and available. End date is flexible based on patient partner wish.

Reimbursement

This is an unfunded project and as such, there is no compensation offered at this point. Should funding become available, patient partner compensation will be offered. Until then this online opportunity is strictly voluntary. Patient Research Partner health research training opportunities, through the AbSPORU Patient Engagement Team, will be offered.


For further information or to apply please connect with
Grace Lam
glam@ualberta.ca
780.492.1657

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CALGARY

University of Calgary Foothills Campus
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EDMONTON

College Plaza
1702, 8215 112 St NW
Edmonton, AB T6G 2C8

Land Acknowledgment

The Alberta SPOR SUPPORT Unit operates on and acknowledges the lands that are the traditional and ancestral territory of many peoples, presently subject to Treaties 6, 7, and 8. Namely: the Blackfoot Confederacy – Kainai, Piikani, and Siksika – the Cree, Dene, Saulteaux, Nakota Sioux, Stoney Nakoda, and the Tsuu T’ina Nation and the Métis People of Alberta. This includes the Métis Settlements and the the Métis Nation of Alberta. We acknowledge the many First Nations, Métis and Inuit who have lived in and cared for these lands for generations. We make this acknowledgment as a reaffirmation of our shared commitment towards reconciliation, and as part of AbSPORU’s mandate towards fostering health system transformation.

 

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