Patient Advisory Group Member, Canadian Burden of Symptoms Study

Do you suffer from symptoms that affect your quality of life? Use your experience to guide researchers studying the burden faced by patients and the effect this has on health service use and costs.

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

Lead Organization or Department

University of British Columbia, School of Population and Public Health

Aim

The Canadian Burden of Symptoms Study (CBOSS) is the first comprehensive investigation of symptom burden in Canada. The main goals of the study are to provide information on the burden patients face when experiencing any number of health-related symptoms, the effect this has on quality of life, health services use, and economic impact. The role and specific activities of the patient advisory group will be collaboratively determined. We envision that we will work with patient partners to collaboratively draft and provide input on study materials (e.g., questionnaire, recruitment letter, etc.), interpret the results of our baseline online survey of symptoms, help us draft research updates, and collaborate with researchers and other key groups on topics for ongoing analysis.

Level of Engagement

This opportunity is at the level of involve on the spectrum of engagement. The promise to you is that the health care partner will involve patients in planning and design phases to ensure ideas or concerns are considered and reflected in alternatives and recommendations.

Eligibility

• This opportunity is open to anyone with experience of living with any number of symptoms (i.e. one to many) associated with a health-related issues (e.g., back pain, headache, fatigue, joint pain, anxiety, constipation, etc.). Please note that you do not need to experience these symptoms with any specific frequency, you do not need to have a diagnosed illness, nor do you need to have spoken to a health provider about your symptoms.
• We are seeking equal gender representation
• The ability to read and understand English is required
• Comfort sharing opinions and ideas based on personal experience is important
• People should have access to a telephone and a computer with word processing and presentation software (e.g. PowerPoint) and internet access
• Availability for a half-day in-person orientation and training meeting in Vancouver. Date to be determined, but we are looking at either February 23 (preferred), 24 or 25
• Patients should have previously attended a PVN orientation and completed the Volunteer Agreement

Logistics

• Vacancies: 4-6
• Commitment: If funded, the project will run for 5 years. People are asked to make a one-year commitment and may re-evaluate after one year whether they are able to continue. We will seek to replace patients who leave prior to completion of the project
• Quarterly meetings (approximately 1.5 to 2 hours), in person or via web conferences, with additional meetings and email correspondence as needed
• A representative of the advisory group will be invited to participate in additional investigator team meetings

Reimbursement

Out-of-pocket expenses (e.g., mileage and parking) will be reimbursed according to the policy.

Background

A group of researchers from UBC, Trinity Western University and other Canadian universities are proposing to develop a new survey to learn more about a wide range of symptoms that people experience (e.g., back pain, headache, fatigue, joint pain, anxiety, constipation, etc.). We refer to this as the Canadian Burden of Symptoms Study (CBOSS). Our goal is to provide important information on the burden of a wide range of symptoms among Canadians. The survey will cover approximately 100 symptoms. This information is critical for developing patient-centered strategies to reduce symptom burden. The survey will ask questions about how common certain symptoms are, what their impact is on quality of life, and which treatments are used. This will be followed up with a sub-sample of the general population filling out electronic diaries for selected symptoms for shorter durations as well as monthly follow up assessments. The survey will also explore possible causes and track how symptoms change over time. We expect the results to help health care providers and policymakers improve the provision of care for Canadians. Researchers are currently at the stage of preparing a grant proposal.

Engagement Leader Contact Information

Colleen McGavin
Patient Engagement Lead, BC SUPPORT Unit
250-889-2691
cmcgavin@bcsupportunit.ca