Oct 18th-21st, 2023
Calgary, Alberta, Canada
The spectrum from Indigenous lens to Indigenous led people-centred measurement approaches: Whose perspectives are we missing?
Synopsis:
Ongoing colonialism continues to impact the wellness of Indigenous Peoples and constructs barriers to accessing traditional health practices. Further, the lack of diverse Indigenous voices and methodologies in mainstream measurement contribute to health inequities. This symposium aims to share four distinct Nation and place-based perspectives and approaches to measuring the unique health and wellbeing needs of Indigenous Peoples. The symposium will expose gaps in measurement and measurement methodologies that challenge the assumptions of the dominant systems perspectives. Recent calls for eradicating Indigenous-specific racism and discrimination in the health system have created space for Indigenous people to join the conversation on providing culturally safe measurement. Indigenous led and lens measurement highlights measures and indicators relevant to Indigenous Peoples’ wellness providing contextual strengths-based solutions.
Each of the four presenters shared their perspective:
- Wise Practices – from Indigenous lens to Indigenous led (British Columbia)
- Co-endeavour, building Māori Health Equity Report of New Zealand Health System Quality Dashboard (New Zealand)
- Decolonizing Birth Research: Indigenous-led research centering lived expertise and equity in perinatal services) (Manitoba)
- Supporting the Trajectory of our Spirit: Living the Cree Pimatisiwin and Blackfoot Kipaitaipiiwahsinnooni – “Our Spiritual Way of Life” (Alberta)
Following the presentations the symposium moderators facilitated discussion to inspire ongoing conversations about thinking and doing measurement differently. It is paramount to self-reflect and keep in mind, who is telling the story to initiate more responsive changes for those who have been historically excluded from the dominant systems perspectives. Both, Indigenous led and Indigenous lens measurement approaches offer a more wholistic story that is currently missed.
At a critical time in our Reconciliation journey with our Indigenous people here in Canada, we see this as a unique opportunity to welcome our international peers in a good way to this topic and create a safer space for conversation.
1st Presentation:
Wise Practices – from Indigenous lens to Indigenous led (The Office of Patient-Centred Measurement – Indigenous Advisory Committee)
AIMS
In British Columbia, patient reported experience and outcome measures are a provincial strategic objective, giving people who use healthcare services in B.C. a voice in evaluating the quality and safety of their care and progress towards providing patient-centred care. BC’s Indigenous Advisory Committee explores how Indigenous knowledge, experiences and ways of knowing can inform and decolonize current PCM processes (i.e., survey tool selection and development, data collection processes, analysis, reporting and dissemination and on Indigenous ways of knowing).
METHODS
Information sessions were held to promote patient-centred measurement projects to Indigenous teams, health services and researchers. These engagements led to the funding of 3 Indigenous oriented patient-centred measurement projects and the formation of an Indigenous Advisory Committee with B.C. Patient Centred Measurement (BC PCM). Initially, the Committee developed a robust module of survey questions measuring cultural safety from a First Nations and Métis lens. Findings from 4 sector surveys were reported utilizing a distinctions-based approach. One of the funded studies led by the First Nations Health Authority (FNHA) explored how to ask First Nations people about their care experiences and wellness in ways that are culturally safe and accessible.
RESULTS
Person-centred measurement from an Indigenous lens is a good starting point, but Indigenous led measurement utilizing Indigenous methodologies that incorporate Indigenous ways of asking, sharing, assigning meaning and importance, and addressing challenges will result in more meaningful improvement in the quality and relevance of health data captured from Indigenous Peoples. The BCPCM Indigenous Advisory Committee is working to articulate the pathway to Indigenous led patient-centred measurement. The FNHA study produced a number of Wise Practices for Indigenous patient-centred measurement.
CONCLUSION
Indigenous person-centred measurement needs to be led by Indigenous researchers with methodologies relevant to the worldview of the peoples on whose land the research is conducted. The use of Wise Practices ensures more fulsome, culturally safe participation in data collection and community relevant analysis. Use of culturally safe methods that respect the sovereignty and self-determination of Indigenous Peoples will lead to more accurate data to drive systems change and improve health and wellness in Indigenous communities.
2nd Presentation:
Co-endeavour, building Māori Health Equity Report of New Zealand Health System Quality Dashboard
AIMS
This presentation describes how the Health Quality and Safety Commission (the Commission) partnered with Te Tumu Whakarae (Pillars of Māori Health Leadership in District Health Boards) to co-design the Māori Health Equity Report of New Zealand Health System Quality Dashboard. It also demonstrates how this interactive reporting tool assisted in addressing health inequity for Māori population of New Zealand and helped local and national system to generate actionable insights for quality improvement.
The Commission as a crown entity has the responsbility to enable Māori to excercise authority over their health and wellbeing and to achieve equitable health coutcomes for Māori. Health equity remains the central of the Commission’s work.
METHODS
In the re-development of the Health System Quality Dashboard, we focused on designing an equity view to address the inequity of Māori health outcome. We partnered with Te Tumu Whakarae and worked together as a team. The team undertook a PDSA approach seeking consultation from internal and external Māori stakeholders and produced an innovation of Māori Health Equity Report in 2020. It is ground-breaking work and is resulting in behaviour change in the system to address indigenous health and wellbeing.
RESULTS
The Māori Health Equity Report is an interactive online reporting and analysing tool. It gives at a glance an in-depth overview of equity gaps at both local and national levels with Statistical Process Control method (SPC). In the report, a dartboard uses slices to group related indicators and show their pattern by theme. The report also provides the details of each selected indicator from the dartboard, including a line chart presenting the change over time and a bar chart illustrating the variation between districts. The tool is easy to use, accessible and downloadable.
CONCLUSION
Since 2021, the Māori Health Equity Report has been updated quarterly as a useful tool to highlight health inequity and drive improvement in closing gap between Māori and non-Māori health outcomes.
The co-endeavour with Te Tumu Whakarae supported by various Māori stakeholders, while work continues to constantly improve presentation, indicators and data sources used. It also enhanced a partnership between the Commission and Māori stakeholders.
3rd Presentation:
Decolonizing Birth Research: Indigenous-led research centering lived expertise and equity in perinatal services
AIMS
Indigenous people are more likely to experience barriers and maltreatment when accessing or receiving perinatal care. However, very little information exists on these experiences, and even less information exists on validated, endorsed or Indigenous developed patient-centered measures for Indigenous people. The aim of this project was to explore best research practices toward the development of person-centered measures of respect, disrespect, racism and/or mistreatment as experienced by Indigenous families during pregnancy and childbirth.
METHODS
In keeping with a decolonizing approach, this project was co-led by 2 Indigenous researchers and 1 racialized settler researcher. First, in a national research project1, we worked with transdisciplinary study teams to develop novel person-centered measures across multiple domains, including, respect, cultural safety, discrimination, and mistreatment during childbearing care. Then we co-led a companion research project, to explore how applicable these methods and person-centered measures were to 5 Indigenous communities in BC, (Seabird Island, Haida Gwaii, Port Hardy, Vancouver, Okanagon), and Cross-Lake in Manitoba. We relied on Community Leads, Knowledge Keepers, and Elders in each setting and we provided resources to them to engage participants and funding to develop community-led research processes. As requested, we provided them templates, measures, information, training and support.
RESULTS
Communities selected their own unique approaches to data collection, recruitment, data management and stewardship, analysis, interpretation, and reporting. Approaches included birth journals, sharing through talking circles, supported survey completion, and working with a storyteller. We found that wise practices for conducting birth research with Indigenous communities prioritize respect, reciprocity, and relationship building. Intentional allocation of leadership roles, attending to cultural safety, supportive research teams, and community-centered research are key factors.
CONCLUSION
We co-developed a roadmap for Indigenous communities to lead and meaningfully participate in maternity care research that promotes autonomy and cultural safety. Our co-leadership model capitalized on our varying areas of expertise and pre-existing trusted relationships with Indigenous communities, Elders and Knowledge Keepers. By applying principles of participatory action and decolonizing research we can improve the integrity and availability of reliable data on Indigenous health and well-being, and enhance the responsiveness and quality of health services.
4th Presentation:
Supporting the Trajectory of our Spirit: Living the Cree Pimatisiwin and Blackfoot Kipaitaipiiwahsinnooni (Our Spiritual Way of Life)
AIMS
A multidisciplinary all Indigenous team partnered with Cree and Blackfoot communities, in Manitoba and Alberta to develop a pathway to examine the question: How do cultural, spiritual, land-based and community connections from the time of birth impact the health and wellness of our children as defined by our Nations? Both the Cree and Blackfoot have developed Nation-based indicators that can measure the strengths of their unique Nations to follow the trajectory of children born with the support of a culturally trained birth helper.
METHODS
Epidemiological measures historically utilize tools from a western, deficit-based framework and are not relevant to how Indigenous peoples perceive their well-being. The Nation-defined indicators of wellness are unique to each community, but the process of development was replicated in each Cree and Blackfoot community. The project began in ceremony, the Advisory circle consisted of community Knowledge Holders, the research was facilitated and analyzed by a community member. All focus groups were conducted in the language of the community.
RESULTS
For the Blackfoot communities, the overarching themes were knowing your family history, clan, and Blackfoot names; feeling connected to the land, ceremonies, and people; having access to the Blackfoot knowledge by knowing a ceremonial knowledge keeper and comprehending the language. A Blackfoot Wellness framework was visualized and is grounded in Siksikai’tsitapii knowledge, which has always been recorded on Blackfoot tipis. Therefore, the framework evolution of a tipi design aligns with Siksikai’tsitapii health sovereignty. The Cree have developed 11 indicators and a visualization for their framework as well. Both Cree and Blackfoot discussions led to the realization that to measure Indigenous indicators, it is just as important to measure the colonial interruptions that help form the health inequities experienced today.
CONCLUSIONS
It is important for Indigenous people to measure what is working and how they return to their intended path as Cree and Blackfoot people. Grandmothers teach that the most critical years of instilling identity and pride are 0-5 years, and strong identity and pride lead to more positive outcomes. This project aims to support wellness and identity by defining wellness from Indigenous perspectives, encompassing their values, and in their language.
Advancing the science of measuring what matters to patients: A qualitative
analysis to identify patient-driven priorities for patient-centred measurement
Fuchsia Howard 1 , Linda Warner 2 , Lena Cuthbertson 3 , Richard Sawatzky 4
1 University of British Columbia, 2 School of Nursing, The University of British Columbia, 3 Office of Patient Centred
Measurement, British Columbia Ministry of Health, 4 School of Nursing, Trinity Western University
AIMS
Patient-centred measurement (PCM) emphasizes a holistic approach wherein the voice of patients is reflected in the standardized use of patient-reported outcome and experience measures (PROMS & PREMS) and represented throughout the continuum of measurement activities. Given the challenges of routinely integrating PCM into clinical care and healthcare service delivery, the perspectives of all healthcare system stakeholders, especially patients, are necessary to advance the science of PCM. Our aim was to identify patient-driven priorities for research on advancing the science of PCM.
METHODS
Seven in-person focus groups were conducted across the province of British Columbia, Canada, that included a total of 73 patients (73% female, mean age 59 years, range 21-88). We analyzed focus group data using inductive qualitative and constant comparative methods.
RESULTS
We found that the patients conveyed a desire for PCM to contribute to healthcare decisions, specifically that their individual healthcare needs and related priorities as they see them are always front and centre, guiding all healthcare interactions. The patients highlighted intersecting priorities for research on advancing the science of PCM that would help transform care by: (1) enhancing the patient-provider relationship, (2) giving voice to patients’ stories, (3) addressing health equity through inclusive and safe PCM, (4) including family and communities, (5) improving healthcare services and systems to better meet patient needs, and (6) bolstering healthcare system accountability.
CONCLUSION
The patients in our study affirmed the value of PCM in the context of an individual’s health and healthcare. That is, the patients’ commentaries suggested the prioritization of research wherein PCM could potentially transform an individual patient’s care and inform changes that would result in improved patient-centred care and services across the broader healthcare system. These patient-driven priorities provide direction for future research efforts that would be positioned to make progress toward better health, better care, and better use of resources for individuals and for society.