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Because your voice matters.

Member, Quality Of Life Measurement Working Group For Mandarin-Speaking People With Thyroid Disease

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Open to Fraser – Vancouver Coastal, Patient partners in the Lower Mainland & Fraser Valley

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Are you a thyroid patient? Have you taken care of a loved one with a thyroid diagnosis? Do you have an interest in helping to improve the quality of life of patients with thyroid disease who speak Mandarin? We need you!

Open to: Patient partners in the Lower Mainland & Fraser Valley

Lead Organization or Department

BC SUPPORT Unit Fraser Centre

Aim

The aim of this initiative is to study the quality of life for Mandarin-speaking patients with thyroid diseases using a data measurement tool. Patients with thyroid diseases experience various kinds of impairment in their quality of life even after treatment (e.g., hair loss, weight loss or gain, trouble sleeping). Therefore, it is important to involve patient partners in this study as they may provide a different perspective on the ways we can improve the quality-of-life measurement for thyroid patients.

Level of Engagement

This opportunity is at the level of collaborate on the spectrum of engagement. The promise to you is that the health care partner will work together with you to formulate solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible.

Eligibility

  • Comfortable sharing their lived experience and working in a team environment
  • Required to speak/read both Mandarin and English
  • Ideally has some connections with a thyroid patient support group for Chinese patients

Logistics

  • Vacancies: 2
  • Date and time: Monthly meetings for one hour
  • Location: Burnaby or remotely via teleconference
  • Commitment: Seven months to a year

Reimbursement

Mileage, parking and refreshments for in-person meetings would be covered by the BC SUPPORT Unit Fraser Centre.

Background

This opportunity has come as a result of a concern for the mental health of Mandarin-speaking patients with hyperthyroidism, including anxiety. The Thyroid-Related Patient-Reported Outcome measurement (ThyPRO) is a measurement tool used to measure thyroid patients’ quality of life after treatment, including mental, physical and social well-being (Watt et al., 2015, & Wong et al., 2018), and will be used to validate the application of a simplified-Chinese version of ThyPRo. The patient partner will help to indicate the possible missing parts in the measurement and add qualitative questions after participants complete the ThyPRO measurement.

Engagement Leader Contact Information

Alia Januwalla
BC SUPPORT Unit Fraser Centre
alia.januwalla@fraserhealth.ca

From Our Community

Nancy J. Wood

Patient Partner, Sidney

Nancy J. Wood

I was thrilled to discover the Patient Voices Network, where the array of places to be the voice of a patient is vast and incredibly interesting. Besides my ongoing “gig” with the BC Emergency Medicine Network, I have enjoyed being involved in several one-off initiatives. I love working with professionals who genuinely value the perspectives of their patient partners.