Key Informant, Cultural Safety in Patient-Centered Measurement for Indigenous Peoples

Volunteer Opportunity
First Nations Health Authority would like to have one-on-one conversations with Indigenous people from across the province to discuss how they would like to be asked about their experience as patients in the health care system. Your voice matters!

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Lead Organization/Department
First Nations Health Authority

Aim
At the First Nations Health Authority we believe that the healthcare system and health outcomes for First Nations in British Columbia can be improved when services are tailored to the needs of Indigenous people and communities. One way to do this is to ensure the Indigenous people in British Columbia can share their healthcare experiences in ways that are culturally safe for them. One of our research questions is “In the modern context of health care delivery, what Indigenous knowledge-gathering approaches, practices, and/or protocols are relevant and important when gathering information about Indigenous Peoples’ health care experiences?”

To explore that, we would like to have a one-on-one conversations with Indigenous people across the province to discuss how (where, when with who) they would like to share back their experiences as patients with the health care system.

Note: More information on the research project is provided below under “Background”.

Level of Engagement
This opportunity is at the level of collaborate on the spectrum of engagement. The promise to you is that the health care partner will work together with you to formulate solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible.

Eligibility
• 18 years of age or older
• Comfortable speaking English
• Used or accessed health care services (e.g. clinic, hospital, outreach or emergency services) as a patient
• Would be comfortable speaking one-on-one with a member of the FNHA research team
• Preference is for peoples who have access to internet or telephone, however patient advocates are welcome to contact us with a recommendation for those with limited access to telephones and/or the internet.
• Please note:

• 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 Cathy Almost

Logistics
• Number of vacancies: 5
• One-on-one conversations to be held either online (zoom or skype, or other) or over the telephone in the summer of 2021. With your permission, the conversation will be recorded. After the interview the conversation will be transcribed into a written document and sent to you for your approval. Once you have given your approval, the written documents will be reviewed by members of the research team for common themes. In the autumn all participants will be invited to a validation gathering which will be held online (at a date and time to be determined). With participants permission the validation event will be recorded. Participants at the validation gathering will review the project findings and make recommendations for improving how Indigenous people are asked about their experience as a patient. A report based on these findings will be provided to FNHA’s partners in the research and health care system.
• Date and Time: As availability allows
• Location: telephone or Zoom (online video conference)
• Commitment: seven months to a year

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 Cathy Almost at calmost@bcpsqc.ca to see if support options are available. We are always seeking to better understand and reduce barriers to participation

Background
It is well documented that the health care system frequently provides inadequate or inappropriate care for Indigenous people in Canada, which results in delay or avoidance in accessing care and exacerbates existing health disparities. We also know that experiences can be harmful if the health care provider is racist or provides unsafe or dismissive care. To improve patient-safety and experiences in health care, patient-centered measurements (PCMs), such as patient reported experience measures (PREMs) are employed at the provincial, regional and local level. The responses collected from patients are used for quality improvement, policy development and to improve service delivery. We also know that Indigenous people are less likely to self-identify as Indigenous, or participate in these measurement activities, resulting in a lack of Indigenous perspectives, or their priorities not included.

We hypothesize that this underreporting and inability to engage Indigenous people in PCMs stems from the lack of culturally safe PREMs, and the lack of self-determination over the use of how the data is used. This study takes an initial step to close this knowledge gap by identifying culturally safe approaches to patient-reported health care and quality experience assessments, thereby working to include Indigenous voices in PCM in BC. This project will lay the foundation for the development of a future work to ensure culturally safe PCM and the inclusion of Indigenous voices and epistemologies in PREMs.

This research is guided by two questions:
1. What culturally safe approaches, practices, or protocols to gathering Indigenous patients’ health care experiences are used in BC, Canada, the United States, Australia, and Aotearoa (New Zealand), and;
2. In the modern context of health care delivery, what Indigenous knowledge-gathering approaches, practices, and/or protocols are relevant and important when gathering information about Indigenous Peoples’ health care experiences?

This study will combine Western and Indigenous knowledge and research methods, in alignment with Two-Eyed Seeing. Utilizing a Two-Eyed Seeing approach, we aim to address both questions in a decolonizing research manner that centers Indigenous self-determination. Our study design includes a scoping review, virtual interviews with 13 key informants, and a virtual validation gathering event.

To ensure that this work is done in a good way, an advisory committee has been formed, co-chaired by an Elder and made up of subject matters experts including project team members, a BC Ministry of Health representative, a Métis Nation representative, FNHA technical experts, and five First Nations and/or Métis patient partners recruited from the Patient Voices Network. First Nations and Métis people make up at least 50% of the committee.

During the interview, the interviewer will go over the study objectives and review why the participant has been invited to contribute. Informed consent to participate will be discussed and obtained. The interviews are anticipated to take 1-2 hours and questions will be open-ended, allowing for participants to include any information they feel is relevant to the project’s objectives. At any time, the participant may take a break or stop the interview. The interviews will be transcribed. Participants will be provided a copy of their transcript for their review and to check for completeness and accuracy. The approved transcriptions will be used for thematic analysis.

The findings from the scoping review and key informant interviews will be refined and validated at a one-day validation gathering which will be recorded. The validation gathering will consist of: Indigenous patient partners (including the key informants); Aboriginal Patient Navigators/Liaison Nurses; traditional knowledge keepers; First Nations Health Directors; members of hospital Cultural Safety Committees; key members of the project team and technical committee; representatives of FNHA governance bodies; Patient Quality, Complaint and/or accreditation experts; and Indigenous/First Nations community members. Participants will be divided into breakout groups using Indigenous conversational methods such as storytelling and sharing experiences. Multiple breakout sessions will occur throughout the event and cover diverse topics including different approaches to data collection, and OCAP principles.

Participants may choose to share experiences of feeling unsafe and/or of racism in the health care system that could be triggering or upsetting. If support is needed it will be accessible through a tailored list of cultural and emotional supports and resources that will be provided before the interview, e.g. KUU-US Crisis Line Society. The interviewers will describe to the patient partners through the objectives of the study and the consent process. Key informants will be advised that they may at any time decline to answer any question, reschedule the interview for a later date, or withdraw their consent and terminate the interview all without consequence or forfeiture of their honorarium. For the virtual validation gathering event, cultural support workers will be available during and after the validation gathering event for participants needing emotional or counselling support via Zoom or phone. The same list of supports and resources will also be provided for validation gathering event to participants should they require healing support.

Our project is seeking diversity in its patient partners including Nations and community membership, life stage and individuals from gender and sexual diverse communities. FNHA acknowledges that cultural safety is achieved when First Nations and Indigenous peoples say their experience was positive, safe and health was improved. Our team is interested in learning from Indigenous people how they would like to be asked about their experience, what allows them to feel safe to share their stories, needs and suggestions about the quality of their experience accessing health services.

Health Care Partner Contact Information

Cathy Almost
Engagement Leader, Patient and Public Engagement | Northern Region
250-615-9932
calmost@bcpsqc.ca