An environmental scan was used for gathering information on different areas of IDEA implementation across HDRN Canada. A survey format was chosen for collecting this information, recognising that the answers to the questions asked about broad organisational and data research topics might be held within multiple staff members’ responsibilities. To allow coordination and connection of diverse experts within an organisation, a survey was developed by a subgroup of the IDEA Team (Amy Freier, Amédé Gogovor, Jessica Duris, John Riley, Mamata Pandy). Questions were developed given our collective scope of academic knowledge about organisational IDEA and data equity and institutional knowledge about the broad activities of member organisations. Question validation was done insofar as the questions were deemed to help us achieve our objectives and were appropriate to the varied states of IDEA across organisations.

Environmental scans conducted in academic contexts aligned closely with IDEA in organisational practices sources and helped to inform questions in sections 2, 3, 5, and 6 of the scan [3, 47]. These applied examples helped to refine focus on operational concerns, specifically relating to budgets, policies, and the collection of personal information to measure the diversity of staff and researchers. Resources specific to IDEA in organisations outside of academia were also formative [48]. In particular, the Global Diversity and Inclusion Benchmarks [49] is an internationally recognised tool and their companion document, Diversity, Equity & Inclusion Approaches Insight and Impact Worksheet (DEI Approaches Framework) [50] helped to guide our focus on education, policies, and reflection of IDEA within organisational strategies.

Several data equity frameworks further informed questions in section 4 and 6 of the scan and were complimentary to the academic sources on QuantCrit and data justice. The “Data Equity Framework” developed by We All Count [51], informed our thinking across the data research cycle, including funding, analysis, interpretation, and data sourcing. The BC Office of the Human Rights Commissioner’s report on disaggregated data shaped our questions related to the collection and use of disaggregated data, specifically towards purpose, process, and tools [34]. Finally, we were inspired by the “Toolkit for Centering Racial Equity Throughout Data Integration,” which at the time had been recently developed by the Actionable Institute for Social Policy [52].

While these frameworks informed the focus areas of our scan, we had to adapt them to the context of a distributed data research network in Canada. Questions were highly tailored to understand the local contexts of the data centres; for example, the relative lack of disaggregated data that was routinely collected across provinces and territories informed the depth of questions that could be asked about demographic data collection and use. Additionally, the relative placement of many data centres, which are nested within larger organisational governance systems, and jurisdictional practices informed questions about budgets, policy autonomy, and resources that could be shared across the network.

The survey was comprised of six sections, including: organisational profile, IDEA Team, employment and organisational policies, data processes, education, and priorities (Table 1). The environmental scan focused on organisational aspects of member organisations rather than the organisational aspects of the network operations.

First, we summarised the data using descriptive statistics and narrative synthesis. Second, we sought feedback from members of the IDEA Team and broader HDRN Canada IDEA Community of Practice which includes at least one representative from all HDRN Canada working groups and teams as well as one representative from each member organisation through two review sessions. Finally, we incorporated their insights to refine our analysis and ensure the findings were valid and actionable.

Among the survey respondents there was one independent organisation, two national organisations, four organisations affiliated with a health authority or hospital, and eleven organisations affiliated with a university.

Eleven of the 18 responding organisations had a formal group or team to help organise and support local IDEA initiatives. While there were an estimated 100 distinct individuals involved with local IDEA teams across the network, the vast majority were people volunteering their time with their work on IDEA teams. IDEA implementation was not formally recognised in these individuals’ job descriptions, duties, or performance reviews. Across the network, only 5.25 full-time equivalents (FTEs) were dedicated to carrying out work to further IDEA initiatives.

Despite the voluntary nature of most local IDEA committees, they are often tasked with substantial and substantive work. Most commonly, local IDEA teams were largely involved with “Providing advice and input into organisational strategy” and “Coordinating education and training.” Less commonly, local IDEA teams were tasked with conducting inclusion surveys, conducting outreach, and performing research.

Ten organisations had policies directly relating to diversity and equity, and nine had blanket policies directly related to inclusion and accessibility. Adjacent to Inclusion, Diversity, Equity, and Accessibility, 10 of the 18 member organisations had policies relating to non-discrimination, 9 on sexism, and 8 had policies on anti-racism. Five of the 18 organisations had specific policies related to anti-oppression, transphobia, homophobia, and religious biases. Four of the 18 organisations had no policies relating to any of these topics.

Across member organisations there were large gaps when it came to financial resources (beyond FTEs) dedicated to furthering IDEA, with over a third having no dedicated budget, and a third having more than $25,000 dedicated to IDEA work (Figure 1).

Fourteen organisations collected self-identified demographic data from employees; of those, 10 indicated this occurred during onboarding of new employees or the start of new contracts. Within sites collecting this data, 11 collected data on sex; 10 collected data on age, disability, and Indigenous identity; nine on gender identity or expression; eight on race; seven on immigration status; six on language; and five on sexual orientation.

Notably, eight member organisations collected self-identified data on service users, students, or researchers. Of those sites, seven collected data on gender identity or expression and Indigenous identity; six collected data on race and disability; five collected data on age, sex, sexual orientation, and immigration status; and one collected data on language.

Member organisations were asked to identify any tools or guidance their organisation provides for researchers working in the administrative data environment. A number of examples were provided covering key tasks of data centres, including appropriate use of disaggregated data, health equity and social determinants of health, IDEA in study team composition, research question development, variable identification, community or public engagement, and knowledge translation.

As HDRN Canada member organisations largely provide services related to the use of already collected data, questions about data collection were omitted.

The scan demonstrated most traction within the realm of disaggregated data. The term “disaggregated data” represents the concept of collecting sociodemographic equity data to facilitate the disaggregation of results from whole populations to systemically marginalised populations. Across respondents, five organisations indicated that they had formal mechanisms to ensure disaggregated data are considered within data research project design and interpretation (for both internal and external researchers). A further four had informal processes that were recommended but not required.

No organisations reported having any tools/methods to adequately track whether data about systemically marginalised populations were being used to inform health or health systems in their respective provinces.

Respondents identified education as a priority to further awareness of concepts of IDEA. Most commonly, 11 respondents used webinars to provide education; eight respondents indicated that guest speakers, conferences, and E-learning modules were used to provide education; six sites relied on workshops and orientation training; four used toolkits, and mentorship; and six organisations employed some other mechanism to increase learning and awareness of IDEA.

Member organisations were asked to indicate what priorities existed in their organisation related to IDEA from a curated list covering organisation and data research activities. Results indicated that cultivating support from management or advisory boards, dedicating time for staff to learn about concepts of IDEA, and incorporating IDEA into the organisation’s mission, vision, or strategic plan were their top three priorities (Table 2).

Building competence focuses on improving the effectiveness of interactions among individuals [50]. Across North America, organisations are heavily investing limited IDEA resources into training and education. Similarly, in HDRN Canada organisations, webinars, guest speakers, and workshops were popular mechanisms to learn about embedding IDEA in operational and data research practices. Research shows the most impactful IDEA training derives from multi-sessional programmes that build upon knowledge, skills, and organisational capacity [53]. However, many organisations still rely on one-off unconscious bias training sessions, which are shown to be unhelpful and often harmful [53].

At HDRN Canada, staff often access IDEA-related education through their host institutions, where content remains conceptual rather than applied to data research. This scan did not ask whether the training provided was mandatory for staff and leadership. As a distributed network, HDRN Canada could strengthen organisation-level priorities by providing coordinated, cumulative, and skills-based training to all its members and member organisations.

While building knowledge and capacity in IDEA is essential for change, training rarely results in measurable behavioural changes [54]. Future education initiatives should be tied explicitly to learning outcomes, and subsequent environmental scans should examine changes in behaviour, operations, and attitudes as a result of training.

Being in compliance refers to rules, legislation and any other regulatory requirements [50]. Organisations are obligated to enact policies that reduce discrimination and harassment [55]. Implementing IDEA-focused policies is foundational to advancing positive change and needs to be supported by training to promote awareness and accountability in the workplace [56]. A scan of Canadian universities found significant variation in IDEA-related policies [2], which is mirrored across HDRN Canada member organisations. These differences reflect how institutions understood, internalised, and operationalised concepts, with diversity and equity as the most digested and actioned concepts in organisational policies.

Survey respondents indicated that IDEA concepts are often embedded within broad anti-discrimination/harassment policies. While broad policies encompass all forms of discrimination targeted policies are also necessary to enact specific and timely responses [57]. Equity impact assessments, aimed at uncovering structural biases and gaps within policies, have become popular tools to address these limitations [58].

A significant yet unintended finding of the environmental scan revealed a lack of awareness regarding where policies were located within the host organisations. Many member organisations indicated that no individuals were assigned to track updates to institutional policies or roll out new policies, particularly prevalent in data centres affiliated with governments or universities. Discussion showed that gaps in knowledge were leading to gaps in application and timely access to resolution or justice.

Overall, the wide variation in policies reflected a lack of established mechanisms to deal with equity issues. Within a distributed network, this finding has implications for how IDEA issues are addressed (e.g., when staff are hosted at two separate institutions and thus governed by different policies). At the time of the environmental scan, HDRN Canada did not have guidance on how to navigate such policy issues.

While there are few agreed upon standards related to the demographic diversity of staff members, demographic data is often seen as one of the most tangible measures of IDEA within a workforce and is reflected within Canada’s Employment Equity Act [59]. The Government of Canada has created the 50-30 challenge to achieve gender parity and increase representation of systemically marginalised groups on boards and senior management [60], or research appointments, for example Canada Research Chairs [61]. However, these programmes have limitations. Pursuing 50-50 gender parity while recognising gender is not a binary is potentially harmful. Further, measuring diversity through a thirty percent indicator may flatten many other aspects of diversity and intersectionality (religion, language, worldview, SES, disability).

Within academic or government institutions, data centres or departments often lack direct control over which demographic data is collected from employees during onboarding or at different times throughout employment. Even in cases where demographic data were collected from employees, most organisations did not have access to this data to analyse the diversity of data centre staff as stipulated within the Employment Equity Act [59]. Anonymous staff, vendor, and product-user surveys and scans were also rarely resourced or prioritised.

HDRN Canada’s distributed structure adds complexity. Staff are typically hired by local institutions bound to prescribed hiring procedures, making additional diversity requirements not feasible at this time. Moreover, assignments to HDRN Canada work are dependent on local skills and capacity. Nonetheless, understanding staff diversity is important to obtain a baseline measure and to identify specific gaps in experiences and perspectives.

Developing the organisation includes systemically improving performance [50]. Most organisations had a team to help support local IDEA initiatives, often relying on employee volunteers and individual dedication. As in line with other organisations, this work was typically done outside of job descriptions, was unevaluated, and added to regular job requirements [62].

Volunteerism has both positive and negative aspects. Volunteering demonstrates genuine buy-in and dedication from staff. However, reliance on volunteers can be tenuous, especially when formal duties recognised in job descriptions take precedence, when employees leave the organisation, or when burnout happens amongst volunteers [63]. As IDEA becomes central within organisational strategies, increasingly more critical planning and decision-making is placed on employees who may not be appropriately compensated, are pressured to undertake this emotionally-taxing work alongside their regular responsibilities and are often members of systemically marginalised groups advocating for their own rights [63–66].

Advancing of IDEA requires a dedicated budget [67], yet these budgets are often the first cut during financial adversity [68, 69]. This runs counter to the fact that recessions impact systemically marginalised groups the earliest and the hardest [70–72]. As a distributed network of federal, provincial, and academic units, understanding the current financial resources dedicated to IDEA within each of the member organisations was important for HDRN Canada as a first step to coordinating and sharing resources across the network.

Significant funding gaps exist across member organisations. Some academic respondents’ institutions reported zero IDEA budget since IDEA budgets sit with central administration or faculty rather than local units. The lack of agency within academic units speaks to the fact that in most cases IDEA initiatives are top-down and are disconnected from members’ specific needs.

Since inclusion represents how people feel, the perception of no dedicated resources may signal whether IDEA is valued [73]. However, the IDEA Team hesitated to set a minimum standard for IDEA budgets, understanding that funding decisions outside of a data centre’s control could become exclusionary. These disparities demonstrate an equity issue. Notably, the organisations with the highest budgets were often SPOR Support for People and Patient-Oriented Research and Trials (SUPPORT) Units funded by Canada’s health funding agency, CIHR, and local partners, whose mandates identify equity, diversity and inclusion (EDI). Their examples show how IDEA can be embedded in operations, something newer for data centres, yet crucial to sustainability of IDEA.

Data centres within HDRN Canada are stewards of administrative data, registries, and survey data; they provide access to data once ethics, privacy, and permissions requirements have been met. Data centres can instruct researchers who are part of their unit to follow best practices in incorporating IDEA concepts into their research, but they are unable to impose requirements and processes onto external researchers beyond what is required in data sharing agreements.

When the environmental scan was conducted, knowledge of how to consider equity in data processes (including curation, cleaning, linkage, analytics, and interpretation) was limited across the network. Instead of asking an overwhelming amount of specific questions, which might have limited survey responses, we decided to ask overarching questions in the hopes that diverse processes would be revealed.

Despite the limited disaggregated data being collected across Canada at the time of the survey, responses showed high interest in best practices [34, 52, 74–76] However, the treatment of disaggregated data was not cohesive across the network and very few organisations had adopted tools that address disaggregated data explicitly. HDRN Canada has an opportunity to fill this gap as an access hub for researchers across the country. The desire for, as well as caution towards, the collection and use of disaggregated data from systemically marginalised groups is clear [76–78]. Guiding documents in the collection and use of this data are being released from governments and institutions across the country and HDRN Canada can provide a platform for sharing these documents with all researchers who access data through the HDRN Canada website.

While there is a call to ensure that disaggregated data is specifically used to improve equity [34], there were currently no mechanisms developed to ensure use of disaggregated data was tied to equity initiatives in policy or system improvement. As a first step toward creating an HDRN Canada IDEA Strategy, the lack of coordinated and consistent data processes to further IDEA is a foundational discovery, providing an opportunity to move this work forward across jurisdictions by leveraging existing guidance and resources.