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Patients’ Experiences and Insights in Patient Engagement in Research

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Open to Interior Region, Volunteers across the Interior region

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Interested in identifying “What matters in patient engagement in research”? The BC SUPPORT Unit Interior Centre Patient Engagement in Research Planning Committee will work toward the successful development and implementation of the Patient Engagement in Research Collaborative event and would like to engage with patients to ensure that their ideas are reflected in the program.
Open to: Volunteers across the Interior region

Lead Organization or Department

BC SUPPORT Unit Interior Centre Key Contact: Karin Maiwald, Interior Health

Aim

The BC SUPPORT Unit Interior Centre Patient Engagement in Research Planning Committee will work toward the successful development and implementation of the Patient Engagement in Research Collaborative event taking place in January 2017 (exact date and location TBD). We would like to pro-actively engage with diverse patients across the entire Interior region in the planning of this regional initiative to ensure that their suggestions, needs, ideas, or critiques are reflected in the program as well as in this regional plan or approach itself to meaningfully engage patients in research. This is in line with engaging patients as early as possible in the planning process.

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

  • Person must be over 18 years of age. We encourage patients from diverse ages, gender, region/community, health conditions, experiences with research and research-related activities, skills and expertise to consider participation.
  • Preference for volunteers with diverse experiences with researchers/students and health care providers engaged in research. In general, to be comfortable with being involved in planning or design phase so we can ensure that patients’ ideas and concerns are considered and reflected in alternatives and recommendations. Also, to be comfortable with developing alternatives, recommendations and solutions in research processes. A question that could arise is, “What are examples of good research and research practice, according to you?”.
  • Preference for volunteers who wish to engage in a private conversation about research and research-related activities but hesitate sharing suggestions, ideas, or critique in an open environment such as a focus group or public forum, world cafés etcetera. And, this engagement opportunity does not include any travel.
  • Open to volunteers across the entire spectrum of health-problems and/or disabilities across the whole Interior region.
  • Patients should have previously attended a PVN orientation session. If you have not attended an orientation but are interested, please contact the supporting Engagement Leader directly to see if accommodations may be possible.

Logistics

  • We are looking for approximately 10-12 PVN Volunteers. Additional volunteers may be included if there is much interest and time permits.
  • This is a one event – the telephone/teleconference preliminary conversations are scheduled to take place in September and October 2016, although some conversations may be held in November 2016, if needed. Various meeting dates will be offered to the participants, allowing flexibility and preference.
  • Conversations will be approximately 45 minutes long but can be shorter/longer (maximum one hour). Note: conversations will be recorded, if the participant agrees, to ensure we capture what is being said and can go back to key pieces in conversations. The participant can stop the conversation at any time.

Reimbursement

We do not expect any expenses to occur as a result of these conversations.

Background

  • Patient-oriented research is defined as research that engages patients as partners and focuses on patient-identified priorities with the goals of improving patient experiences, health outcomes and the health system.
  • The BC SUPPORT Unit is a multi-partner organization created to support, streamline and increase patient-oriented research throughout BC. The Unit is one of several SUPPORT Units established across the country as part of Canada’s Strategy for Patient-Oriented Research (SPOR) led by the Canadian Institutes of Health Research (CIHR). Regional centres will be the first point of contact for stakeholders located outside of the Vancouver region.
  • According to CIHR, “Canada’s Strategy for Patient-Oriented Research (SPOR) is about ensuring that the right patient receives the right intervention at the right time” (CIHR 2015). The objective of SPOR is to foster person-centred evidence-informed health care by bringing innovative diagnostic and therapeutic approaches to the point of care, so as to ensure greater quality, accountability, and accessibility of care.
  • BC SUPPORT Unit regional centres, corresponding with regional health authorities and their affiliated universities, will provide a key integration function, ensuring that patient-oriented research is conducted and research evidence is used to improve patient experience and outcomes – and that patients are engaged in these efforts.
  • The BC SUPPORT Unit Interior Centre is one of the regional centres.
More about the opportunity (Who else will be involved) First, in the Interior Centre, we are asking patients about their perceptions and experiences when engaging and participating in research in the Interior region. Secondly, we like to hear their needs, ideas, and suggestions to design patient engagement in research in this large organization. And, we will be asking researchers, decision-makers, clinicians and providers similar questions. What are benefits and risks, if any The Interior Centre estimates no risks to participants when engaging in preliminary conversations with trained professionals from the Interior Health Authority and from the University of British Columbia- Okanagan. And, the participant can stop the conversation at any time. We would like to suggest that participating could benefit the people in the Interior region and in BC in terms of contributing and having a voice in designing a NEW research strategy in the Interior region.

Health Care Partner Contact Information

Selena Davis
Engagement Leader, Patient and Public Engagement | Kootenays & Boundary
250.505.7866
sdavis@bcpsqc.ca

From Our Community

Christine Wallsworth

Patient Partner, Vancouver

Christine Wallsworth

Patient and family partners should not be a check box on research proposals! They need to be involved right from the start. I know patient and family partners are doing their part by providing their knowledge to researchers from their lived experience.  It’s a win-win for us to work together through PVN to make sure our input drives improvements.