S1-Episode 7: First Nations data sovereignty

Patricia Kosseim: Hello, I'm Patricia Kosseim, Ontario's Information and Privacy Commissioner, and you're listening to Info Matters, a podcast about people, privacy, and access to information. We dive into conversations with people from all walks of life and hear real stories about the access and privacy issues that matter most to them. Hello listeners, and welcome to another episode of Info Matters. Thank you for joining us. We acknowledge the land we are on today is the traditional territory of many diverse First nations, including the Mississaugas of the Credit, the Anishnabeg, the Chippewa, the Haudenosaunee, and the Wendat peoples.  We also acknowledge that Toronto is covered by Treaty 13, the Williams Treaty, and the “Dish with One Spoon” Wampum Bill Covenant, an agreement to peaceably share and care for the resources around the Great Lakes. Today, the meeting place of Toronto is still the home to many Indigenous peoples from across Turtle Island. We respect a long-standing relationship that Indigenous peoples have to this land as the original caretakers, and we are grateful to work with and live alongside the nations on this territory. It was in 1996 that the report of the Royal Commission on Aboriginal Peoples was published. The OCAP reports spoke to the problematic relationship that Indigenous peoples have historically had with researchers, academics, and other data collectors. The reports spoke of Indigenous peoples not having been consulted about what information should be collected, who should gather that information, who should maintain it, and who should have access to it. It recognized the need for First Nations, Intuit, and Métis people to govern their own data. Today's episode focuses on the right of First Nations in particular to own control, access, and possess information about their peoples. This right to data sovereignty is fundamentally tied to self-determination and to the preservation and development of their culture. My guests for this episode are Dr. Jonathan Dewar, Chief Executive Officer of the First Nations Information Governance Center and Ms. Carmen Jones, Director of Research and Data Management for the Chiefs of Ontario. Jonathan and Carmen have joined me today to discuss ownership, control, access, and possession of First Nations data. More commonly known as the OCAP principles. Jonathan's area of expertise include First Nations data sovereignty, information governance, and research ethics. His work at the First Nations Information Governance center is to ensure ethical data collection and, that First Nations communities are empowered to use their data for their needs. Carmen led the implementation of the First Nations Data Governance Agreement between the Chiefs of Ontario and the Institute for Clinical and Evaluative sciences or ICES, and works directly with First Nations communities in Ontario to facilitate the implementation of the OCAP principles on the ground. Jonathan and Carmen, welcome to this episode of Info Matters. Let me start with you, Jonathan. Can you describe for us the work of the First Nations Information Governance Center? Dr. Jonathan Dewar: I'm joining you from Ottawa, which should be better known as the traditional and contemporary unceded territory of the Algonquin nation, and, I say it in that way for a very particular reason. For us to acknowledge the territory that I'm in, we need to not just refer to it as a traditional territory, something that is in the past, but a contemporary unceded territory and that's acknowledging the future that we have to move into. I'll give you the elevator pitch to get us started, but the work that we do actually goes back over 20 years, though FNIGC as it's now known is only 11 years old as a standalone organization. So, today we're most known for our national survey work and that's the longstanding First Nations Regional Health Survey and then the thematic surveys we do under the title of Regional Social Survey. And so we've done education early learning education employment, most recently, labour and employment, and we'll have additional themes in the coming years. We're also known for research work that we do, which aligns with priorities that have come out of that survey work over 20 plus years. And then I think many people know us as the National Stewards of the OCAP principles. So FNIGC and OCAP, if they're known, they're largely known for that work. And I think what your listeners need to understand is that we are a national organization that exists because the ten First Nations regions in Canada choose to come together to do work that is best done or necessarily done at a national level. So we are the organization that does that national level work. Our regional partners handle the regional and sub-regional work that may be done as a part of those national surveys as a part of the research work and as a part of the education and training work that we do. PK: So, what does the acronym OCAP stand for, and more importantly, what does it really mean? JD: So, OCAP stands for Ownership, Control, Access and Possession. And it's meant to be a tool first and foremost for First Nations, but then also for anyone who might work with First Nations to ensure that First Nations are able to exercise their concept or concepts of First Nations data sovereignty. We say First Nations plural because there are many First Nations in Canada, many First Nations languages in Canada. There's a great deal of diversity across and within First Nations in Canada, so it is important to understand that. And so when we talk about first nation status sovereignty, or we talk about the First Nations principles of OCAP, we are talking about different First Nations. And so the vision of our organization is that every first nation will achieve data sovereignty in alignment with its distinct worldview and this is to acknowledge that diversity. And the fact that First Nations are not a monolith in Canada. These are incredibly rich and old cultures and nations that have developed over millennia. And while there may be similarities, there can also be incredible differences. And so the OCAP principles are a set of principles at a high level that First Nations can come together on. We work at the level of principle as FNIGC, but First Nations, the rights and title holders, work at the level of definition and implementation. And so it is a First Nation in accordance with its First Nations laws from time immemorial to contemporary understanding of those laws, its worldview, its traditional knowledge, its contemporary knowledge. All of those ways, it approaches ownership, control, access, and possession in a particular way. A First Nation defines ownership, control, access, and possession, and then implements it accordingly. So in that sense, it is the rights and title holders of a nation or a community within that larger nation context, who take the principles, which is a great starting point, take the principles and make them live. And so whoever they're working with, needs to know what the OCAP principles are to be the best partner of that First Nation. Carmen works with one of our regional partners, the Chiefs of Ontario. I'm super pleased that she's able to join us today, too. She can talk about what it means to work with First Nations very directly on the ground in the context of that region that we can refer to as Ontario. PK: Carmen, I'm looking forward to hearing about your experience in implementing these on the ground, but before we get there, Jonathan, can you tell us about the history behind these OCAP principles? Where do they come from originally? And why was it so important to develop them in the first place? JD: There is this long legacy of unethical behavior in research and information gathering. That includes the over collection of information from First Nations people, First Nations communities from First Nations themselves. Why is the federal government, why have provincial and territorial governments done this? Well, because they can. And so there is this imbalance in power that has long existed and as I said, still persists to this day. So, in the early to mid 1990s, Canada made a decision to leave First Nations on reserve and in Northern communities out of three important population surveys. And First Nations communities, the First Nations population was already struggling with a dearth of good information about First Nations, their own communities. And so being left out of what is admittedly a poor tool, a Canadian tool, is still a huge challenge. In some ways it's better to be involved in something that is less than perfect than to not be involved at all. So, this created a huge challenge for First Nations leadership. What they did was they turned that challenge into an opportunity and they lobbied for the creation of a First Nations led approach to data collection. That eventually saw the creation of what we now call the First Nations Regional Health Survey. The aspiration initially was for it to be longitudinal. An assessment had to be done in 2011, several years later as to the ongoing feasibility of a longitudinal study, it was determined it was simply not feasible with the degree of complexity and the level of support that the federal government was willing to provide. And so instead we have the cross-sectional approach that we know today. So, this was historic. First Nations able to lead the discussion on not only how they would collect, what they would collect, but, everything from conception to completion is informed by First Nations ways of thinking, ways of knowing, ways of being, and this has to be done, of course, collectively. And with that incredible diversity across the country, of course, there are the challenges of how diverse First Nations can come together and do this work. So, if you take the legacy of unethical behavior, you take this historic moment of First Nations achieving the success of being able to go forward with a First Nations led approach. There was the need to land on the way this work could be done ethically. And out of those conversations around the ethics of this work developed a set of principles. This was the set of principles that our collective of First Nations could use to ensure that First Nations data sovereignty was being advanced. That First Nations, given their inherent treaty and constitutional right to self-determination could successfully embark on this kind of never before conceived, never before completed, never before done, process of national survey work. And then that it really just sort of caught fire as this incredible tool for First Nations, not just in this national survey work, but in other work across the country, having to do with information, whether that's research or its relationships with a provincial territorial and federal governments and beyond. PK: So, Jonathan, what did the Truth and Reconciliation Commission have to say in their report about the need for good information and the respectful collection of data concerning Indigenous peoples? Were there any specific calls to action in respect of data sovereignty? JD: So the Truth and Reconciliation Commission in its large reports, which everyone of course should read. It doesn't make specific reference to First Nations data sovereignty or the OCAP principles, but it certainly makes repeated reference to the importance of the Royal Commission on Aboriginal Peoples report, which you referenced earlier. So, that was in 1996 and of course the TRC report was in 2015. So we're seeing a span of 20 years there, but to their credit, the TRC talked about the importance of the RCAP report. They took a different approach to the idea of recommendations instead, putting out what they call the “calls to action.” So, there are 94 of them and data is an important element of several of the calls to action. There are calls to action about collecting specific information because it's lacking. And then very importantly, there are these calls to action around a national council for reconciliation. So, this would be an independent body that could hold the government to account on reconciliation. And it would need to have the mandate to collect... Well, first to define what information is necessary, collect that information and then hold the government to account. So, one of those recommendations talks about the Prime Minister reporting to parliament on progress. Well, he's going to need data to do that as well. So, the National Council on Reconciliation, its data needs are extremely important in the TRCs report. But I think we can extrapolate from that the importance of First Nations, Inuit and Métis nation working with its partner, Canada in these efforts. So, all of the constituencies of Canada coming together to determine what needs to be collected so that good reporting can be done and ultimately the Crown Canada could be held accountable. Now, that means that First Nations, Inuit, and the Métis nation will need to be able to express their approaches to sovereignty, their approaches to data sovereignty. And I tease that out necessarily because First Nations, Inuit, Métis nation have different relationships with the Crown historically and contemporarily. And so we approach these issues differently. I won't speak to Inuit or Métis nation aspirations toward something called data sovereignty in their worldview or worldviews. You'll have to have them on your podcast to talk about it. PK: Certainly we can do that. In your view, how well understood are the OCAP principles among and across First Nations communities and how are they ultimately enforced? JD: So, I think Carmen is going to be able to speak to this in some really beautiful detail based on the work that she does in Ontario with First Nations in Ontario. I can tell you from the national perspective, that the understanding around OCAP is much stronger today than it was five years ago and 10 years ago, and 15 years ago. I know the tireless work that people did to develop these concepts to communicate them. To work with First Nations, to learn from mistakes, and of course, build on successes. And there are many across the country that we could talk about if we had more time. So, it's extremely well understood. It's not as well understood as I think we'd all like. The problem is First Nations, well, you know, First Nations governments are the most over-inscribed governments on the entire planet. They're municipal, they're regional, they're provincial, territorial, they're federal all wrapped into one. And so given that workload First Nations governments, they simply don't have the resources they need. To say nothing of the inequities that exist because of the Indian Act, because of the legacy of colonialism. I mean, you only need to look at front page news stories about the underfunding of First Nations education on reserve. The underfunding of child welfare. I mean, these are front page stories in all jurisdictions across the country. So, it's this lack of capacity that really hinders the First Nations ability to wield OCAP as a tool, to the best of their ability. It's why Carmen's work is so important to support First Nations on the ground from a regional perspective. It's why FNIGC and Carmen sits in our national board is so important because we can support from a national level. And one of the ways that we support from a national level is we do the education and training, or at least the first step of education and training around the OCAP principles. So, if you go to our website, FNIGC.ca, you'll find all kinds of information on OCAP. You'll also find instructions on how to take the current online Fundamentals of OCAP, course. And that's a sort of OCAP 101 course that can get people started. That's for both First Nations people, communities, nations, and organizations, but also for non-indigenous people of whether they're working with First Nations now or not, this is an important tool for people to have in their toolbox. So, while we want to do better, I'm incredibly impressed with the progress that has been made over 20 years. But the truth is we want your office and all of the colleagues you work with across Ontario to be expert in that tool that is OCAP. Both what it is and how to wield it. And if we're not there yet with you, it shows that we have some work still to do, but that's what we're here for. PK: Thank you for that, Jonathan and we're always looking to learn more, and we'll certainly take you up on your offer of more education. And speaking of our office, of course, is the Information and Privacy Commissioner of Ontario, I'm curious to know why privacy isn't mentioned as one of the OCAP principles. Was it not considered as important 25 years ago when these principles were developed? Or do First Nations just have a different conception of privacy? Jonathan, what's the reason why privacy doesn't feature in your OCAP principles. JD: Yeah, it's a good question. And I won't be able to give the definitive, definitive, definitive answer. I'll say this, we have recently done a paper that's going to be coming out and we have plans for the coming years to do a great deal more work in this area. I think you know well that Canada has been looking at the privacy act and related legislation, and there will be changes to the information regime if we can call it that. There were a series of discussion papers that came out I think for justice and we have responded to that constructively. So, that information is going to be coming out. It's a very long paper so I won't try to say everything that is in that document, but you hit on something at the end of your question which was, do First Nations have a different concept of privacy? And the simple answer to that is yes. One of the problems is, Canadian law really falls down on this issue for First Nations, because the focus is on the individual and not the collective. First Nations have a collective right to privacy, but where is the Canadian law that supports that? Well, it doesn't exist. First Nations from time immemorial have had concepts of privacy. They've had First Nations laws. Now, these would of course be in original languages, and not using the word, English word privacy, but that exists and that knowledge is in communities, it's in First Nations. And so that has always been... The problem has been Canadian law, essentially overshadowing First Nations law. It's that imbalance of power that we've talked about. And that's one of the things that we have to rectify within our work toward reconciliation, whenever that is. Canada and First Nations, if they're truly in nation to nation, relationships need to reconcile that and so what can Canadian law do alongside First Nations law? First Nations law being the more ideal place to articulate what it means for the collective to have a right to privacy. So, could there be a second “P” on OCAP? That's an interesting thought. We will certainly take that back into the collective conversation that we have, but I think there's a great deal of work that needs to be done within First Nations and with Canada to work through those issues. But, the simple fact of the matter is yes, First Nations have their own thinking on, their own concepts of, privacy and Canadian law is insufficient. PK: And do you think Canadian privacy laws should evolve to include this collective notion of privacy or group notion of privacy? JD: Well, I go further than should and say, it has to be both. Canada can never achieve a harmonious nation to nation relationship with First Nations without it. PK: Very interesting. You've given us so much to think about. Thank you, Jonathan, Meegwetch. Carmen, I'd like to welcome you to join us in this fascinating conversation and for listeners to hear your views as well. Let me turn to you now and ask you to tell us a little bit about yourself and the work you do at the regional level with the Chiefs of Ontario. Carmen R. Jones: [Indigenous language] Carmen Jones [Indigenous language] Before I talk, I want to acknowledge and thank you for having me on your podcast. And I'd like to acknowledge the Anishnabeg people in the traditional territory of the Anishnabeg nation and the Treaty of 1850. I'm situated right now in Sudbury, Ontario, so thank you for having me. This has been great. I've been at the Chiefs of Ontario for about eight years, but I started with them in 2010 on the implementation and development of the Data Governance Agreement with the Institute for Clinical Evaluative Sciences. As Jonathan has said, I've been around in 1997 when the RHS, our Regional Health Survey was put in place. And the concept of OCAP did come out, so Chiefs of Ontario is one of the pilots of that, of the regional health survey. So, quite familiar with the past work that we've done in OCAP. I have been working at the Chiefs of Ontario and implementing OCAP principles at the regional level. As you know, the Chiefs of Ontario is a secretariat. There's 133 First Nations in Ontario that we work with and has been quite a long journey and OCAP principles is one of those journeys. PK: That's fascinating. I understand your role actually involves implementing OCAP principles through data governance agreements with health research organizations. For example, you mentioned the one between First Nations community and the Institute of Clinical and Evaluative Sciences or ICES. So, on the ground, Carmen, what does that work involve? When you're actually negotiating research agreements at that level, how do you explain the importance of integrating OCAP principles? CRJ: When they develop the governance agreement with the Institute for Clinical Evaluative Sciences, ICES, that took quite a long time. We did that from 2010 onwards. The agreement covers all the data that sits in ICES that is First Nation data, and the communities can access their data at the Chiefs of Ontario. We've negotiated also an agreement with the Indigenous Services Canada to bring over the Indian Registry into ICES. And so when we want to do, if a community wants to do a project within their community, that the band Council has agreed to do, we also work with them and ICES notifies us and they say, "Oh yes, go ahead." They can do that through Applied Health Research question, the ARQ request. And they can do that. As well as part of our data governance agreement with the ICES, we've put in place a data governance committee that oversees all research projects that are regional, that are accessing, wanting to access First Nation data at ICES. So, it's a process. They put in an application, we review the application, it goes to the committee. We make sure that the OCAP principles are actually followed. One of the things that happens a lot of times is that researchers look at OCAP and say "Oh, it's a barrier." You know, like, "Why do we have to go through all of this?" But, I think the most important thing that we have to understand is that it's a tool to work better with researchers to be able to have data that's interpreted by First Nations people. Many of the research that came out years ago, which has harmed our people, did not shine the light on our people as a resilient people. And so what happens a lot of times researchers say, "Well, why do we have to go through all this to understand OCAP?" Well, in order to work with us, wouldn't it be better to work with us in partnership? To understand where we're coming from? Instead of saying, "Well, we want to do it the way we want to do it." So, I think it's very important for researchers, or if you want to go into partnership with First Nation community, to be able to understand why we need OCAP principles and why the communities as the holders of that data need to be able to use it in a good way so that they can do the programs and services that they need in their communities. For example, we just completed a diabetes project across the province, and that really helped in showing that our diabetes rates, particularly in children are going up. So, we used our own data to show that these are the things that we need to have done, but we did it in a good way. And the researchers that worked with us was in partnership. Which makes a very big difference is having, instead of having research that come to us and say, "We want to do this because it's part of our PhD.” Or it's part of like, "I need to do a report" or "I have to be published." Well, I think don't you think it's better to work with us so that you know how that we look at things. So, that's a lot of the work that I do. PK: Fascinating. I think you make a very, very compelling case for the need for education. To really help researchers gain better understanding of the people with whom they work and how these OCAP principles, far from being a barrier can actually be an enabler, as you say, to sound research and ethical data collection. So, when these OCAP principles are applied properly and appropriately, in what ways can data collection, data sharing, and data governance in general actually affect positive change in the health of First Nations communities? Are there you can share with us of how good research ethically done, respectful of First Nations and their data sovereignty, resulted in positive changes in the health of First Nations? CRJ: For example, we worked with about 90 communities up in the far north in doing chronic disease. So, now that they've looked at that data, they're being able to put it in plans in their communities so that they can be able to put the proper services that are needed. In the past what happened is that government always looked at our communities like we don't have the data to show that what's happening in our communities. So government steps in, in this situation, the data actually provided the information, the services that needed to go into those communities, particularly around mental health, which is a very, very good point about the data that we’ve shown about mental health. We have to look at mental health in a different way. You have to look at the past of our people. You have to look at what's happening now. You have to look at what's going on in the communities. So, that data was collected and it was given back to the communities and they were able to put in mental health services in their communities. That's a really positive health change instead of always having a situation where it's always like, "Oh my God, they can't do it." Yes, we can. Just give us the data. When you equip a community with the data that they need, then they can govern their community properly. And I think that's the key issue that we tried to push out to our communities. We are in baby stages in Ontario, we are working with FNIGC to develop a research information and governance centre in Ontario and trying to give the understanding what OCAP means. How to work with our communities and having that patient-oriented research, which is very important as well. PK: Indeed, those are very powerful examples. Thank you, Carmen. I guess one last question I'd like to ask you from the perspective of First Nations, is how willing are communities to participate in these types of research projects? Have the OCAP principles helped in establishing that basic level of trust needed for First Nations communities to want to participate in research? And for these projects to be ultimately successful and beneficial to First Nations peoples? What's your assessment of the level of trust that exists from the perspective of First Nations communities vis-a-vis researchers? CRJ I think that there are some researchers that are out working with our communities that have over the years built trust with our communities. But, there are communities that will not allow people to come to do research. I'll give you an example of Manitoulin Island. They have an ethics committee for those communities that are there. So, when a researcher comes in, they must go to their ethics committee to make sure that first of all, they look at the OCAP. They also look at what kind of relationship that they're going to build with those communities that they are working with. There's hesitancy out there in the communities, because the communities are saying we've been researched to death. But, they haven't seen the benefits of that research for their communities. I think that because of that, we at the regional level, and also at the national level, have to build trust with our communities, because they always come back to us, "Do we have to do another research project?" So, it's very important that we were using administrative data as well to link to see what the disease rates are, whether or not there's needs to be changes. Instead of always going to a community and asking to engage. We do have a process, if it's a health research project, there is the Data Governance Committee, but we also go to the... It's called the Health Coordination Unit, which is all the directors of the political territorial organizations and independents that sit there. And we bring the research to them and they say whether or not it fits within our priority areas to do the research. So, they have to work with their communities as well. So, because of what's happened in the past about researchers and what's happened in the past about none of that research came back to the communities and when it did come back or when it was released, it was never in a good way. And I think that we have to do a lot of work with our communities as well, to get them to understand what OCAP means and to get to build that trust with our communities. One of the common words that I've heard in the past is expert researchers. Trusted researchers. Well, for us trusted researchers does it mean that you're trusted in our communities. Makes a big difference. You have to build a relationship no matter who you are, so I think that's very important. PK: Thank you so much, Carmen. And thank you, Jonathan, as well for teaching us about First Nations data sovereignty. About the importance and the origins of the OCAP principles. And most importantly about the critical need to establish that trusting and respectful relationship on which research can proceed by First Nations communities for First Nations communities. You've helped us understand why data sovereignty is so important to self-determination of First Nations peoples and to the preservation and development of their culture, particularly when communities themselves have a say in identifying research priorities, designing research methods and ensuring responsible and ethical use of data to help communities support themselves in improving their level of services and ultimately their health. So, thank you both of you so much. For those of you out there who want to learn more about the OCAP principles. I encourage you to visit the First Nations Information Governance Center website, and find more information about OCAP there. And if you're interested in general information about access and privacy topics, you can visit our website at ipc.on.ca. You can also contact our office for assistance in general information about Ontario's access and privacy laws. Again, Carmen and Jonathan, thank you so much. It's been a real honour to speak to you both. And I hope this is the beginning of a much broader dialogue towards understanding the importance of data sovereignty to First Nations peoples expressed through the OCAP principles and their role in guiding us along our journey towards lasting and sustainable reconciliation. I wish you both very well. Well, that's it for this episode, everyone. Thank you for listening and until next time. I'm Patricia Kosseim, Ontario's Information and Privacy Commissioner, and this has been Info Matters. If you enjoyed the podcast, leave us a rating or review. If there's an access or privacy topic you'd like us to explore on a future episode, we'd love to hear from you. Send us a tweet @ipcinfoprivacy or email us at [email protected]. Thanks for listening and please join us again for more conversations about people, privacy, and access to information. If it matters to you, it matters to me.