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Because your voice matters.

BC SUPPORT Unit – Permission to Contact Demonstration Project

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Open to Provincial Region, Volunteers across the province

Last updated

Are you interested in health research in BC, and would you like to help improve the way patients connect to research opportunities that are meaningful to them?  If so, this working group may be for you.
Open to: Volunteers across the province

Lead Organization or Department

The BC SUPPORT Unit (BC Support for People and Patient-Oriented Research and Trials Unit)

Aim

The BC SUPPORT Unit Permission to Contact demonstration project is a new provincial initiative to  improve how BC patients and community members learn about research and provide them with more opportunities to participate in research that is meaningful to them. For this engagement opportunity, we are seeking patients and family to be members of the project’s working group/committee. The working group will be actively involved with determining requirements, designing the initiative, assisting with data collection and analysis, implementation and evaluation.

Level of Engagement

This opportunity is at the level of involve on the spectrum of engagement (www.iap2.org). The promise to you is that the health care partner will work with you to ensure that your ideas and concerns are reflected in recommendations and provide feedback on how your input affected the decision.

Eligibility

  • Open to volunteers from across the province.
  • We are hoping to recruit a diverse mix of patient partners and/or family members including those from rural and urban communities, age groups, cultural backgrounds, health care experiences, socio-economic status, etc.
  • PVN members need to have previously attended a PVN orientation session. (If you have not attended an orientation but are interested please contact Karen Estrin directly to see if accommodations may be possible).

Logistics

  • Number of vacancies: 4-5
  • Commitment: January 2017 – June 2018 (estimated end date), ~ 4 hours/month
  • The working group will hold an initial face to face orientation meeting (half day) in Vancouver in January 2017, and then will connect via monthly teleconference/web conference meetings (typically 1 hour) and weekly or bi-weekly email communications

Reimbursement

Travel expenses (flight, hotel, mileage, per diem) will be reimbursed for any face to face meetings.

Background

The BC SUPPORT Unit (the Unit) is a multi-partner organization created to support, streamline and increase patient-oriented research throughout BC. The Permission to Contact demonstration project was selected as one of two projects to advance research in priority areas and to evaluate the operations of the SUPPORT Unit in the conduct and application of patient-oriented research. The draft objectives of the Permission to Contact initiative are to:
  • Increase BC patients and residents’ research knowledge and awareness
  • Provide BC patients and residents with more opportunities to participate in research meaningful to them
  • Improve participant recruitment into research studies in BC
The draft objectives will be discussed at a stakeholders meeting held at the end of November and will help inform the working group. The working group will be composed of ~12 members that will include patients, researchers, health leaders and subject matter experts.  The working group will be led by Stefanie Cheah, Project Manager, Vancouver Coast Health Resarch Institute. Other project team members include, Colleen McGavin, Patient Engagement Lead, BC SUPPORT Unit, and Stephania Manusha, Director, Clinical Trials Administration, Vancouver Coastal Health Research Institute with others to be determined. Dr. Robert McMaster, VP Research, Vancouver Coastal Health serves as the Principal Investigator.

Engagement Leader Contact Information

Karen Estrin
Engagement Leader, Patient and Public Engagement | Lower Mainland & Sunshine Coast
604.668.8245
kestrin@bcpsqc.ca

 

From Our Community

Karla Warkotsch

Patient Experience Consultant – Interior Health

Karla Warkotsch

The question I like to ask health care employees is ‘Who is this for?’ and ‘Do we have the right people at the table?’ As a health care employee, I see how easy it is to fall into doing for, rather than doing with patients. The voices of the patient, family and caregiver are essential to ensure the patient is central to the direction and focus of the work being done.