Interview Participants, Review of Screening Options for Colorectal or Endometrial Cancer, or Lynch Syndrome

Ever wonder how decisions are made about diagnostic and treatment options and wish you could influence the process? Share your experience with colorectal cancer, endometrial cancer or Lynch Syndrome and assist a team at UBC to ensure patient perspectives are included in a review of standardized DNA testing to identify Lynch Syndrome.

Open to: Patient partners across the province

Lead Organization or Department

Centre for Clinical Epidemiology and Evaluation, University of British Columbia

Aim

Patients with Lynch Syndrome have an increased lifetime risk of developing colorectal cancer, endometrial cancer and other cancers. The BC Ministry of Health has asked the Centre for Clinical Epidemiology and Evaluation to do a health technology review of the appropriateness of standard DNA testing to identify patients with Lynch Syndrome. Patients and family members of individuals with Lynch Syndrome will be invited to participate in a telephone interview or focus group (for those in Vancouver) to explore their experience. The information gathered will assist the team to better understand the outcomes that are important to patients, as well as their experiences of tests and treatments received to date. This will ensure the patient perspective guides the evaluation of the clinical literature and will also inform the recommendations made in the final report.

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

• Comfortable sharing experiences with testing for Lynch Syndrome. Patients with colorectal or endometrial cancer, or patients with family history, or any other patients who have received deficient DNA mismatch repair (dMMR) testing.
• 19 years of age or older
• Preference will be given to ensuring that patient partners are representative of each region of the province
• Able to participate in an English-language telephone interview or focus group
• Able to receive incoming calls within BC without any additional fees

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: 10-15
• Date and time: Telephone interviews and focus groups will be conducted on weekdays at a time that is convenient for patient partners.
• Commitment:  One time event; under 1.5 hours
• Location: Telephone – One-on-one interviews will be conducted by telephone. Patient partners will be called by the interviewer. Focus Group – Patient partners in greater Vancouver may have the option to attend a focus group at the Vancouver General Hospital, Research Pavilion. Those in Vancouver who prefer to participate in a telephone interview (rather than a focus group) may have the option to do so.

Reimbursement

Telephone interviews - No out-of-pocket expenses are expected to be incurred. Focus Group – Patient partners who attend the focus group will be reimbursed $20 by the health care partner to cover all expenses related to local travel. Patient partners will not be required to submit receipts for travel expenses, but will be asked to sign a form confirming acceptance of the money.

Background

Health Technology Review (HTR) is a joint Ministry of Health and Health Authority process used to provide evidence-informed recommendations about which new non-drug health technologies (tools, devices, diagnostics, and procedures) should be publicly provided in the province.  Additional information on the Health Technology Review process is available online at www.health.gov.bc.ca/htr. Recently, a decision was made by the BC Ministry of Health to undertake a health technology review of deficient DNA mismatch repair (dMMR) testing, used to identify patients with Lynch Syndrome (LS). Patients identified with LS have an increased lifetime risk of developing colorectal cancer (CRC), endometrial cancer (EC) and other cancers. The purpose of engaging patients is to ensure that the research team conducting the review understands the outcomes that are important to patients, alongside their perceptions and experiences of the tests treatments available for Lynch Syndrome. The information gathered will guide the evaluation of the clinical literature and health policy, as well as the recommendations made to the Ministry in the final report. All information provided is confidential and will only be reported in a manner that protects individual privacy. Additional information related to privacy of personal health information will be shared with participants at the beginning of the interview or focus group. Participants will be provided with a brief description of the information incorporated into the final report.

Health Care Partner Contact Information

Leah Smith
Engagement Leader, Patient and Public Engagement | Southern Vancouver Island
778.678.3977
lsmith@bcpsqc.ca