Engaging Communities in your Data Collection Initiative
COVID-19 has exacerbated many of the underlying inequities within our society. Many of these inequities disproportionately impact Black, Indigenous and People of Colour. The impact of COVID-19 and the increased visibility of racial injustices across North America have shattered the veil of multiculturalism in Canada that was once used to dismiss accounts of systemic racism in our country.
Why do we need sociodemographic data?
Researchers of systemic and structural drivers of health have long been advocating for the collection of race-based and socio-demographic data in Canada to be able to better understand disparate health outcomes and barriers to equitable care at the population-level.
This collection has been happening throughout the pandemic in the United States, and more recently in the United Kingdom, to better identify and address inequities for those most marginalized by society. Ontario has recently mandated the provincial collection of socio-demographic data by all public health units to better understand, prevent, and address the impacts of COVID-19.
Sociodemographic data collection is an important tool in challenging inequity linked to systemic racism, discrimination, and income inequality. Disaggregated data is considered vital for identifying disparities, monitoring the impact of interventions and advocating for policy change.
The collection of sociodemographic and race-based data is not an end in itself. It is one of many tools that may be used to promote health equity. The data needs to be appropriately analyzed as part of a clearly articulated plan for the development and implementation of equity focused interventions if it is to make meaningful change in reducing disparities.
Why do we need to engage communities in the collection and use of this data?
Our health system historically undervalues the wealth of knowledge that exists within lived experiences. When the system places emphasis solely on the quantifiable, measurable and countable, it often fails to pause, listen, learn and act on what individuals living and breathing inequities experience on a daily basis.
Community engagement for equity data collection initiatives is important because when done successfully it creates a platform for those who are directly impacted by inequities to add colour to the quantifiable. It also allows communities to properly frame what the data is revealing in a way that leaves no room for assumptions because you are speaking directly with the authors. This platform that is built through partnership with community can also serve as a launching pad for collective action planning - what can we do, within our own organizations, and collectively, to address the inequities we uncover through the data collection?
What are some of the concerns community stakeholders have around data collection?
Historical misuse of data: Data has often been collected, interpreted, and reported about certain communities without their consent or approval. Depictions of communities that focus on negatives, harms, and problems reinforce messaging to the broader public that people from these groups are vulnerable and powerless.
Lack of community benefit: Data collectors have often selected to focus initiatives on personal interests or on interests of the larger society, rather than the priorities of the communities they are studying. This has been the case with much data collection around First Nations people whereby the benefits of such collection to the individuals and communities are often unclear.
Lack of ownership and access: Many data collection initiatives enable gatekeeping of information whereby those who are studied are not able to access what has been collected. Ownership of data is a strong focus of the First Nations OCAP principles. Similarly, Black communities have voiced concerns about the extraction of knowledge from Black people, where the data is not owned by or even accessible to Black communities.
Implications for privacy and security: Historically, there have been data collection initiatives that have not respected the privacy rights of marginalized communities. This includes how the data will be collected, stored, and maintained. It also involves ensuring that individuals are fully informed and consent to the collection process. Breaches like this one show how data can be manipulated and exploited if proper security and privacy policies are not in place.
Lack of action: While the intentions of socio-demographic data collection may be to reduce inequities, a commitment to collective action planning is crucial to ensuring this is not data for data’s sake. Often, even where data is collected and available, decision makers are slow to act and provide resources or commitments to meaningfully improve outcomes.
Seat at the table: Traditionally Black, Indigenous, racialized, low-income and other community members who equity data collection seeks to measure are not included in the planning processes. This perpetuates the systemic harms that marginalize and exclude voices from the decision making process. Many organizations, systems and governments also have reputations and relationships with communities that warrant distrust which leads to failure to “engage” or participate in the process. This further leads to a lack of diversity in who is at the table.
What challenges do organizations typically bump up against when doing engagement around data collection?
We have an incomplete list of stakeholders. How do we define ‘community’ in community engagement? Who do we talk to about this?
Think about everyone connected to the problem. As much as possible, centre the role of lived experience and perspectives of community members that represent the groups you are trying to learn about. Remember to build in a budget for your activities so that people with lived experience are properly compensated for their expertise and time.
Consider organizations who are closest to these individuals - who do they go to for support and who do they trust. Many sociodemographic data collectors turn to researchers and other ‘experts’ who may have advice on methodology and best practices, but can also occupy a certain position of power and privilege that may not always be in-tune with the members of the communities.
We need to move quickly to get this engagement done so we can start collecting. This often means engaging too late, or creating the feeling of one-off/token engagements.
If sociodemographic data collection is a new initiative for your organization, you will need to think about this work as the first of many opportunities to collaborate with the communities you are seeking to quantify. Start early in your engagements - the sooner you can get others involved in what you are doing (e.g. shared objectives, project design, etc.), the more meaningful the engagement will be.
Action planning is outside our mandate. We just collect and report the data.
Given the nuances and complexities of data collection, often collectors have a particular type of technical skills and may even be on separate teams within their larger organization. When setting up your data collection initiative, it is imperative to build partnership with data users, not just data collectors. This includes others inside your own organization who will use the data (don’t forget to include a variety of roles from front-line staff to senior leadership!), but also outside of your organization as well. See our list of stakeholders to consider below.
When we do engagements, we get lots of ideas for how to use the data that are outside our scope of control. We also get feedback on things that are already developed and cannot easily be changed.
A good community engagement plan will help you to decide upfront, not only who you will talk to, but what will be in-scope for the engagement. See a framework below that can help clarify your objectives and expectations internally and with your partners.
What might help you get started?
Here’s a framework that we found helpful to sort through objectives of community engagement for a data collection initiative. This framework from the Tamarack Institute (adopted from IAP2 Spectrum of Public Participation) describes a continuum of engagement that allows you to articulate what the purpose and scope of your engagements will be.
Adapted from the IAP2 Public Participation. Spectrum
Consider all the stakeholders necessary to engage as part of this process. For each stakeholder, ask yourself what level of engagement is most appropriate and what you’re willing to commit to.
Here’s an example of the types of stakeholders you may want to consider engaging as part of a socio-demographic data collection initiative.
Public or clients - Individuals within communities who we are collecting data about. It can also include clients of an organization who utilize your services. Examples include community leaders or ambassadors, neighbourhood or resident associations, members of patient-family advisory boards and more.
Service providers - Front line staff and leadership within organizations that work directly with communities who you are collecting data about (e.g. people who are Indigenous, racialized, newcomers, LGBTQ+, have a disability, experiencing poverty, experiencing homelessness, or who use substances). Examples include community health centres and agencies or not-for-profit organizations that provide community supports and services.
Advocacy groups - Community-based representatives that exist inside and outside formal institutions but who are champions of the needs of communities you are collecting data about. Some local examples include Black Health Alliance, Colour of Poverty, Colour of Change and many more.
Sociodemographic data experts - Organizations or individuals that work with or have expertise in sociodemographic data collection or utilization. This can include researchers, public health units, and other government agencies like Statistics Canada.
It can also be helpful to break the data collection initiative into sections because different stakeholders may have varying levels of engagement in different aspects of the work. For instance, sociodemographic data experts would be ‘involved’ in designing the methodology or data management practices, but would only be ‘informed’ in the reporting or use of the data. Data collection initiatives can be broken down into: data collection; project partnerships; survey content and methodology; analysis; interpretation, reporting, knowledge translation; and use/action planning.
For example, for their enhanced COVID-19 sociodemographic data collection initiative, Toronto Public Health will be consulting with community and health service organizations, advocacy groups and community leaders, and sociodemographic data experts to inform how results are interpreted, the content and design of knowledge translation products, the format/audience of products, considerations related to stigma, and the frequency of reporting. Some tools and tactics they will use to facilitate this will include surveys, focus groups, interviews, and informal meetings.
For more information about our learnings guiding an organization through this process, or to talk with the Health Commons team about your own data collection initiatives, contact us.
Tools You Can Use
2020 Black experiences in health care symposium report (PDF)
Sociodemographic data collection (PPT)