The sector’s data problem needs a unified approach, but organizations are struggling to get on the same page. From developing new data-sharing tools to convincing funders that data is crucial to their charitable missions, here’s how non-profits and charities are coordinating a data renaissance.
A year ago, Melissa Halama was on the lookout for a service that could seamlessly integrate data about her Canadian Mental Health Association (CMHA) clients. Halama is an advocacy and wayfinding coordinator at CMHA Edmonton (located within Treaty 6 Territory and Métis homelands) and needed a new system to simplify their case-management programs. Some clients need one service and follow-up contact, which she says is easy to track. The trouble starts when her clients need to access multiple support programs, her team needs to consult other teams without breaking confidentiality, and the client has more than one point of contact.
A few months ago, Halama’s team began using a program that could manage their caseloads and communicate their clients’ needs as a team – Transform. It’s a digital tool created by Islamic Family & Social Services Association (IFSSA) that records and organizes users’ contact information, the social services they need to access, and much more.
There’s a lot of agencies that are gathering data on client needs and unmet needs. But then there’s that gap of how is this actually being communicated.Melissa Halama, CMHA Edmonton
Some clients accessing social services need a wealth of assistance, from translators to career planners, migration support, or food banks. In Halama’s team’s case, many of her clients also need to be connected to Alberta income-support programs. This is difficult to navigate when clients’ data also needs to remain confidential. “There’s a lot of agencies that are gathering data on client needs and unmet needs,” Halama says. “But then there’s that gap of how is this actually being communicated, perhaps, to those that could provide that service to fill that unmet need?”
But Halama’s concerns about collecting, organizing, and protecting client data are not unique to CMHA’s processes. In fact, IFSSA created the Transform tool because they recognized that non-profits needed to improve how they collect, store, and use their data to effectively serve their clients and communities.
Canada’s non-profit organizations know their sector lacks data about itself and the people they serve. Some organizations struggle to share data about their communities because of privacy concerns and capacity limits. Some actors are forming organizations to help non-profits improve their data strategies. Some are appealing to funders to support better data infrastructure, while other organizations are advocating for the federal government to mandate and fund data collection. Despite these initiatives, the sector lacks a unified approach to data collection and strategy, which could be slowing down its progress.
“There isn’t a level of data mobility or a level of communication between all these different social service organizations,” says Raj Rajakumar, the IFSSA product manager who leads Transform. “We collaborate really well in person. When it comes to an actual technical systems level, we don’t communicate at all.”
There isn’t a level of data mobility or a level of communication between all these different social service organizations.Raj Rajakumar, Islamic Family & Social Services Association
IFSSA began building Transform in August 2022 and launched the tool in July 2023. It is a software-as-a-service (SaaS) web-based tool that can be accessed by any device. The organization is working with developers to include offline data collection so rural communities with unreliable network connections can also use the tool. Transform allows caseworkers to communicate with clients over WhatsApp, Facebook Messenger, SMS (i.e., texting), or other preferred communication platforms. It also enables instant translations to alleviate language barriers.
Rajakumar says IFSSA is working with its developers to include multiple privacy frameworks, such as Indigenous principles of ownership, control, access, and possession (known as OCAP) and the Personal Information Protection and Electronic Documents Act (PIPEDA). Rajakumar says caseworkers can delete data from Transform if clients request to remove their information; “the data belongs to that person,” Rajakumar says.
Clients can also determine which organizations access their data if their support involves multiple organizations. For example, IFSSA staff will tell clients about the organizations they collaborate with and could be receiving support from. If a client had a negative experience with an organization and wants to stop their data from being shared, Rajakumar says that they have “every right to do so.” When social workers update clients’ information in their Transform profiles, they can indicate which organizations should be excluded from having access to their data. “Whenever we’re making referrals or whenever we’re sharing data at a macro level, we already know they’re only comfortable with us sharing with these specific organizations,” Rajakumar says.
Improving capacity to improve data
For some non-profits, data sharing is the least of their worries because they struggle to collect data for themselves.
Daniel Liadsky is the managing director of Purpose Analytics, an organization of data scientists that helps strategize, extract, and transform non-profits’ data and analysis processes. He says many organizations they work with are still figuring out how to gain more competence over the information they collect since they are such large data creators. He says the software systems can act as a “black hole” as caseworkers collect basic contact or operational information that is typically checked only when funder reports are due. The non-profit professionals he works with are left wondering how people are moving through their programs and services, if their programs are successful, and what the specific outcomes are over time. “I would argue that they’re often sitting on a lot of information that could answer those questions, but they don’t have the capacity to spend the time sifting through the data that they have,” Liadsky says.
Purpose Analytics mostly works with program managers and some operations specialists when non-profits enlist their services, as only some organizations have data professionals on staff. Liadsky says most organizations lack clear data goals, such as what they want their data to answer about the organization and what data they need. “What we do with them will evolve as the organizations become data mature,” he says.
If you take people’s information and then it just sits in a computer system and doesn’t get looked at, you intruded on that person to give you stuff and then wrecked the value of what they’ve provided to you.Daniel Liadsky, Purpose Analytics
Liadsky says some organizations have data-management committees to make collaborative decisions about data collection. He says organizations should include community members in the process to understand what to collect and how to serve them better. “From a stewardship perspective, I think this exchange would be more respectful if you actually promised to do something beneficial with the data you’re collecting,” he says. “If you take people’s information, which is a little bit of an intrusive thing, and then it just sits in a folder or computer system and doesn’t get looked at, you sort of intruded on that person to give you stuff and then wrecked the value of what they’ve provided to you.”
This uncertainty around data is nothing new. That’s why PolicyWise for Children & Families has been around for 20 years, strengthening research, data, and evaluation initiatives for organizations to serve children, youth, and families better.
Clearly, something needs to be done to enable the non-profit sector and government to be working in this more collaborative way with the data that they have.Jody Wolfe, PolicyWise
Jody Wolfe, research and policy manager at PolicyWise, says that people are not accessing available data to inform their decision-making and organizations are not taking advantage of how their data could work together. “Clearly, something needs to be done to enable the non-profit sector and government to be working in this more collaborative way with the data that they have,” she says.
PolicyWise’s Build Better Data project is a free resource that takes organizations through the full data life cycle: planning, building, collecting, preparing, analyzing, and informing. Wolfe describes it as a “capacity-building” initiative to improve staff data skills and, thus, organizations’ data capabilities.
Struggling to afford mature data strategies
Beyond that, Wolfe says her organization is focused on developing a better data culture. She says organizations need self-administered tools and a better understanding of what data to collect to drive a more mature data culture. PolicyWise provides staff workshops to actively support organizations in enhancing their data practices.
Neemarie Alam, data strategy manager at the Ontario Nonprofit Network, says one problem with data collection in the sector is staff not understanding how the information they collect is related to a greater data goal or infrastructure. “Your administrative front-line person doesn’t see their work as being data. And they may not understand how that intake process, that admin data that they’re collecting, is actually really critical,” she says. “It becomes something that they do because it’s their job or sometimes off the side of their desk. They get to it when they can, but timely, consistent, and relevant aren’t things that their organization is necessarily imparting to them.”
Your administrative front-line person doesn’t see their work as being data. And they may not understand how that intake process, that data that they’re collecting, is actually really critical.Neemarie Alam, Ontario Nonprofit Network
On top of this, data collection isn’t uniform.
“At the other end of the spectrum, you have folks that have been hired to do specific data projects or to lead data and research projects, who have all this knowledge and expertise but their work is often super siloed,” Alam says. She says the non-profit sector needs more data stewards to develop data infrastructure and improve what data resourcing looks like.
Some of PolicyWise’s workshops are free, while others have enrolment fees so PolicyWise can recover its organizational expenses. Similarly, Transform is a non-profit social service, but IFSSA charges organizations for the program so it can keep developing it for others. The price depends on organizations’ annual recurring revenue and may include additional costs for other supports like developing data-consolidation strategies.
As an inability to afford data professionals and a lack of staff capacity continues to prevent non-profits from adequately collecting data, organizational leaders are turning to funders to fill the gap. “What I’m seeing is that funders are responding to those asks, as opposed to being proactive,” Wolfe says.
Wolfe says that collecting information about grant recipients in her previous role revealed the funder’s perspective on data funding. She says funders wanted organizations to be more innovative in how they organized their systems and coordinated care but didn’t have specific mechanisms in place for ongoing funding, infrastructure, or capacity building. Since there weren’t funding streams dedicated to it, they did not know what role funders had in making systematic shifts.
“Where I do see it happening in the sector is within data collaborations,” Wolfe says. She says organizations with common goals are advocating together to have a stronger voice with funders. “They’re actually generating the case for change themselves. They’re identifying how data would be useful for the shared concerns and shared purpose that they have together as a sub-sector.”
One of these funders is the Ontario Trillium Foundation, where Liz Forsberg leads the partnership work in the impact space, focused on building a healthy ecosystem for data, learning, and action in the non-profit sector. Part of her work involves connecting organizations that are leading data initiatives with other funders to ensure that the sector has a healthy ecosystem for data, learning, and action.
We recognize we can use our powers as funders to approach other funders to say, ‘We think this is important to invest in. Come work alongside us if this aligns.’Liz Forsberg, Ontario Trillium Foundation
“Unlike a grant, we are active in the co-creation of these initiatives,” Forsberg says. “It’s one thing for non-profits to go knocking on a funder’s door, but we recognize we can use our powers as funders to approach other funders to say, ‘We think this is important to invest in. Come work alongside us if this aligns.’ Although I will say it has been challenging in the data-learning space to do that because it’s not a sexy project.”
Alam says a significant part of her team’s advocacy is inviting funders to meet with non-profits to have difficult conversations about what data is being held and what is useful for their data strategies. “Conversations about reciprocal data sharing are becoming more and more parallel. Non-profits potentially risk being left behind as all this other stuff comes barrelling through.”
Appealing to the government
Non-profits face this challenge at the governmental level, too. Cathy Barr, Imagine Canada’s vice-president of research and strategic relationships, has been vocal about the federal government’s failure to mandate and fund comprehensive data collection about the non-profit and charitable sector. “The problem with the lack of data about the sector is that we’re kind of invisible as a sector to the Canadian public, to the government,” she says. “We’re seen as organizations that take money from the government, taking donations, as opposed to organizations that employ people, that deliver products and services needed by Canadians.”
The problem with the lack of data about the sector is that we’re kind of invisible as a sector to the Canadian public, to the government.Cathy Barr, Imagine Canada
Though the number of people who work in the non-profit sector has fallen since the pandemic, there are still 2.4 million Canadians fulfilling these jobs, accounting for 9% of Canada’s gross domestic product (GDP), according to Statistics Canada.
“I think part of it is because we are a female-dominated sector, we are the caring sector, the sector that’s doing a lot of work that historically was done for free, but largely by women and low-income women,” Barr says. “As a result of that historical development, we’re not seen as a part of the economy in the same way the auto industry is, or the manufacturing industry or the agricultural industry.”
Barr says the primary problem is that the federal government does not provide the funding or the mandate to collect data on the non-profit sector. In 2003, Statistics Canada released its Highlights of the National Survey of Nonprofit and Voluntary Organizations. In March 2023, it published an update to the 2004 Satellite Account of Non-Profit Institutions and Volunteering report, accounting for GDP and employment changes in 2019 and 2020.
During that time, Imagine Canada was one of the organizations trying to collect data and advocate for better data collection. In 2009, it started conducting surveys across registered charities. In 2017, it convened a working group on sector-wide data with Statistics Canada to discuss funding issues that prevented adequate data collection. Barr says it can take decades to advocate and continually focus on a topic before you see results.
“Non-profits have always been an extension of government services and have always been expected to collect and report on information to justify their existence,” Alam says.
Wolfe says the government can collect better information about the non-profit and charitable sector by refining what information it requires about it. There are approximately 86,000 registered charities across Canada, identified by the compulsory annual tax filing.
“Enhancing what information is collected on that annual return could be a really easy way for us to get additional information about the workforce that is employed in the non-profit sector, something that we tend to know very little about,” Wolfe says. “Collecting that information on an annual basis from every single non-profit would be a simple way that a small change, in a form that is already in existence, could create a much richer data set and a more accurate and timely picture of what is happening in the sector itself.”
All funders ask for data from their grantees. Instead of asking for reports, they could ask the grantees to participate in a shared data and reporting initiative.Daniel Liadsky
Liadsky raises a similar point. “All funders ask for data from their grantees. They always have to report. Instead of asking for reports, they could ask the grantees to participate in a shared data and reporting initiative,” he says. “Those grantees could have more support around their data and the funder would get better data, more unified data, out of the grantees. I haven’t seen that yet in Canada.”
For Halama, collecting data will continue to be part of her team’s operations, but they are continually exploring how they can refine the collaboration process with other organizations so they can serve their clients better. “We collect data on unmet needs throughout our 211 program specifically, but it’s kind of like, ‘Where does that information go? Does that actually get translated to the community?’ Because we really need to depend on that collaboration amongst folks. I think that’s a big gap I still see and encounter.”
For now, Halama and her team are satisfied with how Transform is helping CMHA Edmonton communicate with its clients. She says they are still developing what data collection looks like for their program and Transform is helping them through that piloting process. “It’s simple and straightforward for what we’re doing, which is needed when the work we’re already doing is fairly complex.”
The illustration that accompanies this article is by Alan Yu. Alan worked with The Philanthropist Journal this fall as part of the experiential learning program at Ontario College of Art & Design University. He notes that the data that non-profit organizations collect are like pieces of a jigsaw puzzle. The two puzzles in the illustration represent the datasets collected by different organizations, and the two puzzle pieces that have been removed are swapped with each other to show the organizations sharing their data to try to complete each other.