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Because your voice matters.

Participant, Pharmacogenetics Policy Review Focus Group

Posted

Closed

Commitment: Short-term

Connection method: Virtual

Open to Provincial Region

Posted

Volunteer Opportunity
The Ministry of Health is hosting a focus group to help guide policy development in relation to a test that determines how an individual’s genetics impact their body’s response to medication.  If you would like to participate in a conversation that will guide this policy development, as well as model a new process for reviewing health policies this could be the opportunity for you!

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Lead Organization/Department
Ministry of Health, Innovation Hub

Aim
Patient partners will be asked to reflect upon policy points while listening to a series of role-played interactions that demonstrate how the policy might be discussed between patient and provider. After listening and reflecting, participants will break out into facilitated focus groups to share their observations and opinions. The patient perspective is essential to the process of ensuring the policy provides safe and transparent guidance in the use of pharmacogenomics testing.

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 patient partners across the province who:
• Have experience of taking a medication that did not work as intended
• Have access to a computer with video and audio capabilities and reliable internet connection
• Are comfortable participating in a virtual focus group via Zoom
• Are comfortable participating in a focus group with representatives from governmental organizations, regulatory bodies and front-line workers.

If you have a strong interest in this work but have not yet completed a PVN orientation and Patient Partner Commitments, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact Cassy Mitchell.

Logistics
• Number of vacancies: 6
• Date and Time: November 8 from 10am-12pm or November 10 from 1-3pm (please note patient partners need only attend one session). As this project is being guided by principles of human-centred design thinking, and is an opportunity to contribute to collaborative innovation in policy work patient partners will also be offered the chance to debrief their experience with the project leads.
• Location: Virtual participation via Zoom
• Commitment: One time

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 Cassy Mitchell cmitchell@bcpsqc.ca to see if support options are available. We are always seeking to better understand and reduce barriers to participation.

Background
Patient partners are invited to contribute their experience and expertise to the development of a new policy regarding pharmacogenomics testing. Pharmacogenomics (PGx) is an area of medicine that focuses on how an individual’s genetics impact their body’s response to medication. PGx tests range from assessing single gene-drug interactions to analyzing a person’s full genetic profile against a panel of drugs. Data on the clinical efficacy and cost-effectiveness of PGx are limited, although there is evidence to suggest that incorporating PGx testing into treatment plans may reduce the risk of adverse drug reactions (ADRs).

PGx may be accessible through third-party insurance companies, certain BC pharmacies, at research-based labs in academic health science centers, as well as commercially from non-BC and international companies. Despite the absence of public coverage, the diversity of PGx testing is increasing, as is demand for access from both patients and healthcare providers. The complexity and diversity of PGx testing services available illustrates the need for a comprehensive regulatory environment.

There will be representatives from governmental organizations, regulatory bodies, front-line workers and patient partners participating in the focus group sessions.

Engagement Leader Contact Information

Cassy Mitchell Engagement Leader, Patient and Public Engagement 250.279.0717 | cmitchell@bcpsqc.ca

From Our Community

Agnes Black

Director, Health Services & Clinical Research and Knowledge Translation – Providence Health Care

Agnes Black

It’s really hard to make changes in health care. When a PVN patient partner says, ‘This is important to us’ it keeps us grounded on why a change is needed and keeps us motivated to keep going on projects.