Can the non-profit sector adopt voluntary standards to improve its data problem? 

This article was previously published by The Philanthropist Journal and is reprinted with permission.

Canada’s first data standard for the non-profit and charitable sector was published on May 7. Entitled CAN/DGSI 100-11: Data Governance – Part 11: Delivery of Community and Human Services, the standard outlines minimum requirements to help organizations responsibly collect, store, and use personal information from the communities they serve. It comes after years of non-profit networks and professionals seeking solutions to address the sector’s data deficit and limited data coordination.  

In 2021, the Ontario Nonprofit Network (ONN) introduced data as an agenda priority and created a proposal for the Data Evidence-Use Learning (DEAL) framework to outline how the sector’s data can be used ethically. In 2022, the Canadian Centre for Nonprofit Digital Resilience was established with a mission to help non-profits thrive in a tech-driven world. The same year, the Charity Insights Canada Project launched its pilot to transform how the sector uses its data about itself. Last year, the Federal Nonprofit Data Coalition celebrated its first large-scale survey of the sector in 20 years, but determined that it needed more support to address its data deficit. The standard will help to consolidate data knowledge and improve data maturity across organizations.  

The document covers five sections: governance and oversight, data collection, data storage, data access and use, and data sharing and publishing.  

“I think that there is some level of assurance, some level of security . . . that the data that you’re providing is being handled by an organization [with] minimum requirements that they’re implementing to preserve your privacy: in the ways that they collect, store, and use the data that you’re providing to them,” says Darryl Kingston, executive director of the Digital Governance Standards Institute (DGSI). 

DGSI, an organization that develops digital-technology governance standards globally, supported the development of the standard. Drafted primarily by a voluntary team of non-profit organizations, networks, and funders across Canada, it was then reviewed by DGSI’s technical committee on data governance, approximately 250 participants in total. The draft will be open for public review for 60 days so people outside of the technical committee, such as other non-profit professionals across Canada, can review it and provide feedback before it is published as a complete standard. It will undergo review every two years.  

As written in its forward, the standard is meant to “reduce risk to Canadians and Canadian organizations adopting and using innovative digital technologies in today’s digital economy.” 

“Having very clear guidelines, standards, and policies in place to determine how you treat other people’s information is critical to protecting that information,” says Wilfreda Edward, executive director of the Canadian Centre for Nonprofit Digital Resilience (CCNDR). Edward joined CCNDR after the data standards project was already underway. She has not seen the standard ahead of publication, but given CCNDR’s mandate to empower non-profits to use data and technologies more effectively, she says that having a standard to support that work is a “no-brainer.” 

But what exactly is at risk if organizations don’t establish data practices in their work?  

The significance of data best practices

“Data is human and it’s a human right,” says Michelle Christian, chief of staff at the Canadian Mental Health Association (CMHA) Toronto and a member of DGSI’s data-governance technical committee.  

Christian says that CMHA Toronto partners with its front-line workers, clients, and their family members to handle data. CMHA Toronto staff share how clients’ data will be collected and discuss how clients feel about the ways their data is gathered as they analyze what information they are collecting together. “When a client comes for service and they tell me something voluntarily, that’s data,” Christian says. She thinks that the standard can help staff think about why they are asking questions and only recording pertinent information. She uses an example of a Black woman sharing her postal code as a potential opportunity for discrimination. If the woman lives in an area known for facing worse credit ratings, less access to public services, underfunded schools, or other disadvantages, people could perceive her differently. Christian says the same can be said for sharing one’s marital status or even one’s name. “The voices of Black people in particular are largely missing, particularly in this jurisdiction in Canada, around data, data governance, AI, all things intangible,” she says. “I think that’s a really dangerous piece if we’re not at the table in multiples.” 

Christian says she sees the data standard as a place where a small non-profit can begin to think about how they can engage with data better. She says small organizations in the sector – especially those that are led by youth, newcomers, and Black, Indigenous, or racialized communities – should have the opportunity to “tap into the power of this intangible economy, because if they start to work through the [data standard] in a simple way, they also have the opportunity to decide in their own communities how to monetize their own data to further their own mission.” 

Christian says she wants small organizations to understand that the data they have is power, and that they do not have to give it only to funders – they can use it to further their own missions.  

Equipping organizations to implement the standard

But do all organizations have the capacity to implement the standard in the first place? The standard is voluntary, which is why ONN’s director of policy and interim co-executive director, Pamela Uppal-Sandhu, says her fellow expert drafting team members wanted to ensure that the standard was accessible to small to mid-sized organizations.  

Uppal-Sandhu says the team tried to address two key questions when framing the standard: 1) How does the committee talk about the disproportionate harm of bad data practices on Black and Indigenous communities while highlighting all the work that they’ve done, and 2) How does the committee make sure there is an equity lens woven throughout the standard? “Being sector-driven means [the standard] reflects the realities of the sector, and then you also get more buy-in for people to actually use it,” Uppal-Sandhu says. “There’s no point in having a standard that no one is going to use.” 

Christian says the committee tried drafting the standard through the lens of smaller organizations that are often led by Black, Indigenous, and racialized communities. Some questions they considered: “Is this operable? Who would this harm? How difficult would this be? Does this language even make sense to them?”  

The standard includes normative references to works that shaped it, including the Black Health Equity Working Group’s Engagement, Governance, Access, and Protection Framework; the City of Toronto’s Black Community Data Governance Framework; the First Nations Information Governance Centre’s (FNIGC) First Nations Principles of OCAP (ownership, collection, access, and protection); ONN’s Framework for Nonprofit Data Strategies; and the National Association of Friendship Centres’ National Data Strategy.  

FNIGC’s OCAP principles refer to First Nations’ relationship with their cultural knowledge, data, and information. The principles have been in place for 26 years and represent the data sovereignty First Nations are entitled to, including the creation, collection, analysis, interpretation, management, dissemination, and reuse of their own data. 

FNIGC executive director Jonathan Dewar says it takes a lot of work for people to understand how to get from a conversation about minimum standards to best practices in an organization. “Funders hold an inordinate amount of power and influence,” he says. He says organizations need data literacy and need to understand the concepts of data sovereignty and the OCAP principles. “But the federal government does not fund us to do that education and training work.” 

With the funding available to them, Dewar says that First Nations have strategically determined how to steward OCAP principles by creating opportunities to educate others on them, data sovereignty, and broader data literacy questions. FNIGC offers an online course, “The Fundamentals of OCAP,” to educate people about information governance, as well as workshops and presentations.  

Applying this lens to the standard, Christian asks: “What are the kinds of educational supports that would accompany this? This can’t be a stand-alone document. It can be launched with accompaniment, with education, with resources, with a place, over time, that these same organizations can come [to] for some navigational support.” 

As yet, there are no supplementary resources to directly support organizations that want to adopt the standards. Uppal-Sandhu acknowledges that organizations are on their own data journeys but says ONN began with a data governance policy, an audit, and an assessment. “Is there [an] opportunity to think about some tools and templates that would be helpful for small to mid-sized organizations to get themselves unstuck from ‘what do we do next?’” 

Uppal-Sandhu says ONN doesn’t have an IT or data professional on staff, which made co-chairing the technical committee an opportunity to learn how ONN can implement better data practices as it drafts its data governance, IT, and cybersecurity policies. “Did I necessarily think that we were these big data holders, prior? Not so much. But now it’s at the forefront of my mind,” Uppal-Sandhu says. “I’m applying these things day-to-day in the data work that we do . . . [Organizations in the sector] are already doing the work, but it’s just how they do it in the best possible way. And I think the standard gives the foundation for that.” 

The privilege of holding data

Non-profits and charities already collect data for public and private funders. While granting applications and reporting can be laborious, it also consolidates valuable information that organizations are being encouraged to use alongside funder requirements. “The non-profit sector is uniquely positioned to influence the type of data that’s being collected by [federal] grantmakers because we have access to data at the community and the local level that the government has no way of collecting itself, even through the national statistics program,” Edward says.  

Statistics Canada collects data from people, businesses, governments, and private-sector organizations. Their surveys are completed by paper, telephone, online, and in person. Statistics Canada also uses administrative data, open data, and web scraping to improve its data quality. But there are still people and populations left out. “The federal government can say ‘Thou shalt,’ and we then have an obligation to comply,” Edward says. “But I think our role is really to inform the use of the data, because we are the ones who are closest to the individuals that the data is about.”  

During the pandemic, calls for Canada to provide disaggregated race-based data increased. Last year, Statistics Canada announced its Disaggregated Data Action Plan.  

But sometimes, data in the hands of the federal government can be harmful for marginalized communities. “When it comes to privacy, it’s critical to how you leverage that information and how you use it to tell a story that is not your own, and then making sure that data is representative of the populations that it’s about,” Edward says.  

Dewar says that when First Nations acknowledged that the national data the federal government wanted – about them living on reserves, their social determinants of health, and their children and families – would be something the government benefited from, they realized they had to own that information. He says that creating a National Data Governance Strategy, which is in its first phase of implementation, is part of FNIGC’s intention to create a First Nations–led information governance system and a First Nations–led statistical system. 

The Alberta First Nations Information Governance Centre’s report Data Resources and Challenges for First Nations Communities highlights that “data is inherently political” because it helps identify priorities and targets for governments. Collecting information about Indigenous families to remove children and place them in residential schools is just one example of Canada misusing data about Indigenous people to the detriment of their communities. 

“Acknowledging that there are a lot of demands on the public purse, when Canada uses the rhetoric of supporting Indigenous Nations to build the institutions that they need to serve their people, the actions need to match the rhetoric,” Dewar says.  

Christian says that since CMHA is a big and majority-white organization, it gives them “permission” and “some protection” that “requires” them to be brave when re-evaluating the data they send funders, asking why funders are requesting it, and questioning what data the CMHA is leaving out. “Funders are going ‘Show me the data, show me the data, show me the data,’ but they’re divorcing in their minds [that] data is actually human,” Christian says.  

According to Edward, non-profits do have the leverage to say, “We will give you this data because you’ve told us that we have to, but we also have a say in how that data is used.” 

Future of the standard

“Executives have a role to play in understanding how to ingrain data into their organizational operations,” Edward says.  

Uppal-Sandhu says the standard is interconnected, relying on each core practice to inform the next. It opens with definitions of the terms in use and begins with governance and oversight, so data practices can build on each other. “A consultant could be helpful on that front,” she says. “The big organizations are already going to have some of this stuff in place, or they will have capacity, in one way or another, in their organizations to make this data standard come alive.”  

The context section of the standard reads that “Data governance standards are most effective when they are used collectively.”  

ONN’s framework on non-profit data strategies outlines suggestions to support the sector’s data governance, standards, equity, and capacity goals.  

While an organization is encouraged to include its community in decisions about how data is being collected and invest in organizational data literacy, a non-profit collective is encouraged to build consensus on data ownership and storage processes and advocate for more funds to enable accessible data systems in non-profit work.  

“But the standard is not perfect, and I can’t sit here and say that it couldn’t possibly replicate some kind of harm if it’s correctly applied or misapplied,” Christian says. “I think in the journey toward equity, perfection shouldn’t be what we’re aiming at.”