OCAP™ IN ACTION WORKSHOP

February 19 - 20, 2014

REPORT

OCAP™ is a trade-mark of the Information Governance Centre, used under license/or used with permission.

This report summarizes the reports and discussions from the OCAP™ IN ACTION WORKSHOP held on February 19 - 20, 2014 at the Days Inn & Suites in Edmonton. Report prepared, and session facilitated by:

Dr. Marie Delorme, BSc MBA PhD Bay D, 1120 - 44 Avenue SE , AB T2G 4W6 Ph. 403.640.0515 Cell. 403.850.9791 [email protected]

Contents

Executive Summary ...... 2 Highlights from Presentations ...... 3 Full presentations were provided to workshop participants on memory sticks at the session...... 3 Implementing OCAP™ Leadership Resolution / Ethical Space as Ceremony and OCAP™ ...... 3 Certification Process & OCAP™ Overview ...... 5 OCAP™™ and Privacy - A Legal Framework ...... 6 Bigstone OCAP™ in Action ...... 7 Engaging in Indigenous Methodology: Survey tools and Consent Process ...... 8 Education OCAP™ in Action ...... 10 AFNIGC’s Process with FNREEES and RHS Implementation ...... 12 Assembly of Manitoba Chiefs Regional Implementation of OCAP™ ...... 14 Looking for a more streamlines approach: Co-Management and OCAP™ ...... 17 Ethical Space and Ceremony ...... 19 Participants ...... 22

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, 1 Executive Summary

The OCAP™ in Action Workshop was held February 19 and 20, 2014 in Edmonton. The Purpose and Process for the session was as follows:

Purpose Build understanding of protocols and respectful negotiation processes Engage in mutually beneficial discussions

Process Informational presentations from subject matter experts Group work and discussions

Presentations:

Implementing OCAP™ Leadership Resolution / Ethical Space as Ceremony and OCAP™ Brent Scout, Grand Chiefs Liaison Certification Process & OCAP™ Overview Jerry Lanouette, FNIGC Privacy Law Template Bonnie Healy, Operations Manager, AFNIGC Bigstone OCAP™ in Action Lorraine Muskwa, Bigstone Nation Engaging in Indigenous Methodology. Survey tools: culturally relevant; effective; appropriate. Consent Dr. Jacqueline Ottmann, Faculty of Education, Process: forms, implementation, appropriate use, youth consent, parental/guardian consent University of Calgary (Elders Only – Separate Meeting Room) Parallel World Views Elder Reg Crowshoe & Brent Scout Treaty 8 Education OCAP™ in Action Dale Awasis, Treaty 8 Education Director AFNIGC’s Process with FNREEES and RHS Implementation Melanie Parsons & Connie LeGrande AMC Regional Implementation of OCAP™ Leona Star, Assembly of Manitoba Chiefs Nathalie Lachance, FNIHB, & Bonnie Healy, Co-Management Streamlined Approach to OCAP™ AFNIGC Ethical Space and Ceremony Elder Reg Crowshoe, Piikani Blackfoot Round Table Debate focused on negotiating an OCAP™ Agreement between: Industry and Government Elder Reg Crowshoe, Piikani Blackfoot Stakeholders; and First Nation Negotiators

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 2 Highlights from Presentations

Full presentations were provided to workshop participants on USB keys at the session.

Implementing OCAP™ Leadership Resolution / Ethical Space as Ceremony and OCAP™

Brent Scout, Grand Chiefs’ Liaison, Treaty 7

! A Resolution was passed in March, 2010 focused on the concept of ! Our ways of knowing are based on our world views and survival OCAP™ to determine our own collective paths ! There are many commonalities between First Nations systems and ! The ongoing work is to advance resolutions and the development of a culture; when our systems are compromised it is hurtful and harmful; regional centre we need to give voice to the people through creating and participating ! Ownership is about the relationship of a First Nations community to its in ethical space cultural knowledge, data and information ! Through the ages we have studied our world; our ways of interpreting ! Control is First Nations’ aspirations and rights to regain and retain; data have evolved into our ways of governance and laws access to information and data ! We survived on our ability to implement; we used oral models to ! Access is the right to determine who accesses data interpret data and to formulate a readiness plan; this is what OCAP™ is ! Possession is about stewardship about: about collecting and utilizing data respectfully ! Ethical Space and Ceremony - place of learning; place of respect and ! OCAP™ is also about addressing oversight of research and providing discipline; Our Elders carry forth our ceremony; Our ethical space is accountability back to leadership and communities who own their what connects us to our ancestors collective data ! Concept of Ethical space as ceremony; Willie Ermine’s thesis on Ethical ! Data can be a tool for collective change Order outlines that ethical space involves a process for ethical ! Provides the ability to share our stories and important information; to engagement for research and where mutual respect and reciprocity implement ideas and connections; to make informed decisions; this exists. When two worlds converge, Indigenous and Western, we can gives voice and improves the health and wellbeing of our people develop a space for respect; this is the space where the practice of ! People who suffer from intergenerational traumas are impacted by the OCAP™ can be developed destruction of their social structures and relationships; it is important ! OCAP™ principles can be used in all aspects of research and that the voice of people are heard as this will drive policy information, health, education, etc. ! Why is OCAP™ important? It strives for true transformational change; ! Principles of OCAP™ have always been within First Nations people to make sense of the data streams; prevents cultural harm from ! Ethical spaces explore existing power structures; misconceptions; researchers; to take ownership of our self-determination; cultural confusion; building cultural safety and breathing life into implementation evokes cultural change; to understand who we are and OCAP™ how we are ! We have systems in place across the country: oral traditions, songs, and descriptions of our ways of knowing

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 3

! Benefits include: rebuilding community trust; control of our own ! Research is based on respectful engagement analysis; building understanding of protocols and processes; ! Various and distinct world views of First Nations are respected in engaging leadership, researchers, and communities on mutually developing processes and policies beneficial approaches while creating ethical space; using cultural ! Respectful relationships with “The contrasting of parallels to come to the same conclusion and accomplish governments, academia, and world views creates an deliverables; carrying out research by First Nations people; institutions through observation of ethical space … to reflecting our world views; research that benefits our communities; OCAP™ principles protect our knowledge” ! invitation and community consent to conduct research; knowledge Exploring the development of an transfer stays within the community who then decide how to store Alberta Research Ethics Board to Willie Ermine and use the data; data impacts policy and gives voice to First provide oversight of research Nations; and backs up our requests for programs and services ! Culture and ethics are based on the ! Important to negotiate trust and engage people negotiation and interpretation of ethical engagement and order ! Implementation is about exercising jurisdiction and self-government ! Ethical spaces are fundamental to policies, procedures, relationships, ! Decisions need to be based on credible information cultural safety, and the respect of First Nations’ traditions ! Growing numbers of First Nations scholars who are contributing to ! Ethical engagement and cultural interpretation validation is based in the body of information oral implementation practices of: Language , Actions, Songs ! Communities are becoming better aware and more engaged in the collection and governance of information

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 4 Certification Process & OCAP™ Overview

Jerry Lanouette, Development and Training Coordinator, FNIGC

At the AFN Special Chiefs Assembly held in December 2009, Resolution #48 was passed that supported the development of the First Nation Information Governance Centre (FNIGC). The FNIGC was developed and federally incorporated as a First Nation entity on April 22, 2010 and opened its doors on August 1, 2010. The FNIGC is governed by a Board of Directors, appointed from 10 Regions and has offices in Akwesasne First Nation and Ottawa. Founded on First Nations Principles, The First Nations Information Governance Centre is a premier Indigenous model of research and data excellence for the well-being of our Peoples and Communities.

OCAP™ guides a community in making Ownership: The relationship of a First Access: First Nations must have access decisions regarding why, how and by whom Nations community to its cultural to information and data about

information is collected, used or shared. knowledge/ data/ information. themselves and their communities, Mission regardless of where it is held. The right It reflects a First Nation’s commitment to Control: The aspirations and inherent of First Nations communities and The First Nations use and share information in a way that rights of First Nations to maintain and organizations to manage and make Information Governance brings benefits to the community, while regain control of all aspects of their lives decisions regarding who can access their Centre, under the guidance minimizing harm. and institutions, which also extends to collective information. of its member information and data. First Nations organizations; will build It expresses First Nations jurisdiction over people, their communities and Possession: The state of stewardship of capacity and provide information about First Nations. representative bodies must control how data. First Nation possession puts data credible and relevant information about them is collected, within First Nation jurisdiction and information on First All First Nations own OCAP™. The used and disclosed. therefore, within First Nation control. Nations using the highest interpretation of OCAP™ is unique to each It is the mechanism to assert and protect standards of data research First Nation community or region. Extends to all aspects of information ownership and control. practices, while respecting management, from collection of data to the rights of First Nations the use, disclosure and ultimate self-determination for destruction of data. research and information management and in true Follow-up Questions and Answers compliance with the First Nations principles of Q: Do we have a FN community involved with OCAP™ in Alberta? Ownership, Control, Access A: Yes Bigstone and Siksika and Possession (OCAP™). Q: It is frustrating when people come into our communities to do research then disappear. Can the templates and programs be found on the website how are reports accessed? When is process completed? A: Templates will be sent to the regions. Reports are available on the website www.fnigc.ca we are also on YouTube, Facebook, and twitter. Welcome to use materials as long as principles of OCAP™ process completed at next meeting

Certification demonstrates the value and respect placed in OCAP™™ while working with First Nations. Certification demonstrates the highest standard for ethical practices

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 5 OCAP™™ and Privacy - A Legal Framework

Krista Yao, Nadjiwan Law Office: Presented by Bonnie Healy, Operations Manager, AFNIGC

OCAP™ principles recognize the importance of protecting the individual as well as the community. The gift of information comes with a great deal of responsibility as this is the transfer of sacred information. The western way of protecting information is not new. It is critical to understand that both indigenous worlds and western worlds have ways of gathering and protecting information. Our way of transferring knowledge from one generation to the next is intact.

Researchers agree and acknowledge that they do not transfer knowledge back to communities very well. OCAP™ is about transferring information back to communities and ensuring that communities benefit in a win-win manner.

Relevant laws and legislation landscape:

! privacy laws include: Access to Information Act; ! We have an established OCAP™ relationship with the province Personal Information Protection; Electronic Documents Act, ! The language of OCAP™ can be included in all agreements with Library and Archives of Canada Act government, the housing of information, and requests to access First ! Alberta acts include: Freedom of Information and Protection Nations information. A respectful place to work out these Act; Health Information Act relationships in the context of the legislation can be found. ! There is additional Alberta legislation: Freedom of Information ! Terms used in Personal Impact Assessments: data sharing Act Harm Clause 21(1) (a) (b) and 21(3) that acknowledge First agreement, license to use, data governance agreement, service Nations as governments with the ability to have an OCAP™ agreements, memorandum of understanding compliant relationship with the province. It is recommended that everyone become familiar with this legislation.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 6 Bigstone OCAP™ in Action

Lorraine Muskwa, Chief Operating Officer,

As of April 2013 Bigstone took over the transfer of non-insured health benefits. The pilot began in 2003. Q: Use of regional health services data that was returned back to the community. How has the All organizations, whether Facebook, credit card data been used and protected? A: Bigstone developed a report card on how community health was being measured. The RHS companies, life insurance, require the use of data met many of the themes in the Bigstone report card. The data agreements were personal information authorization of the entered into with a BCR and information flows and is housed in a secure manner. There is individual. They control the data, have access, great RHS data and good data measures. The process is costly but the information that the exercise control, and protect their data. community acquires is valuable. Bigstone houses a great deal of data and is

Q: What do you do about members who are living in other countries? committed to keeping information safe. The A: Bigstone does not cover anything outside of Canada. Band members are advised to get data is kept safe for their members. insurance when abroad. The exception is for education travel. Members sign a consent form which provides authorization for the collection and use of data Q: Have you denied anyone and do you have an appeal process? for purposes related to the administration and A: Yes we have denied. It is in how you talk to people to make them understand. The appeal delivery of health services. process is dealing with the manager of non-insured health benefits. If that is declined, there is a second level of appeal through the CEO. The third level is the Bigstone Health The consent does not authorize the transfer or Commission. If it is denied through this process then our staff looks for other options. exchange of information. Any band member can orthodontics are denied. We send these to Ottawa and are looking for our own consultant access their information and can withdraw who will address these claims. If there were an orthodontist in our office these would not consent at any time with written notice. be denied. Bigstone can analyze 12 years of data to Q: Are you a payer last resort in the area of 3rd party insurance? enhance services to community members. A: We try to work 3rd party issues out by working with our clients where the cost is over and above what the policy states. We also have clients who pay for their own services. We can How Bigstone implements OCAP™ principles: only reimburse for what our policy states. It is hard to determine which band members Bigstone has done a great job protecting the have 3rd party insurance. privacy of individuals

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 7 Engaging in Indigenous Methodology: Survey tools and Consent Process

Dr. Jacqueline Ottmann, Faculty of Education, University of Calgary

Indigenous people around the world have been Differences between Western and Indigenous Research has to promote a sense of health and engaging and standing firm on regaining control of research design and protocol: Western is a theory: our indigenous methodologies. researcher orientation; Indigenous is focused on ! it has to be liberating to be emancipatory; to what the community requires in order to get Protocols are those things we do to access be decolonized access to information and recognizes that gaining knowledge and show respect. This is inherent ! it should be transformational for the the truth takes time and respect. within indigenous ways of being and doing. individual, the community, the environment Western ways of being and doing are starting to You have to listen, observe, and be in relationship ! it should move from survival to recovery to understand the importance of protocol in research with the community otherwise the research results development and in our daily lives. are invalid because the researcher interprets it ! it should do no harm from his or her worldview. ! it should always be in relationship building Quantitative data is linked to observation in data mode collection. Historically, research has been about power and privilege; now this is shifting. The message of Questions that researchers should be asking (from We have to think beyond ourselves back to the Indigenous methodology is to bring it back to Smith “Research is Ceremony”) should be based on past and forward to the future. centre. Research should be based on respect and a respect, reciprocity, and responsibility. Data can have a significant impact on decision mutual seeking of an answer or truth. There are several examples of indigenous making. Historically, indigenous people have been Researchers should always be active listeners who communities who have developed their own ethics negatively impacted by data but currently taking are in “learning mode”. and application processes for researchers. Two are: control of our information. If the community is strengthened then everyone ! A Mi'kmaq Ethics Committee has been Research begins with asking: who we are, where do benefits including the researchers. appointed by the Sante' Mawio'mi (Grand we come from, where are we going, what are our Council) to establish a set of principles and responsibilities. Change is inherent in our environment as protocols that will protect the integrity and Indigenous people. There are many examples of It is important to be aware of the good that can cultural knowledge of the Mi'kmaq people. This adaptivity as our learning comes from the land and result from research as well as the harm. is found at the Cape Breton University website our environment. under “Ethics Watch”. In indigenous perspectives there is power in stories ! The Inuit lay claim through the Education Act to and listening. Within indigenous perspective time is access to their information and knowledge not linear but collapsed where the past, present, through research. Their approach and process is and future are captured in every moment. This unique. impacts the approach to research.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 8 ! Researchers have to understand that a community’s protocols supersede that of post-secondary nd institutions. Refer to Panel of Research Ethics, Draft 2 Edition of the TCPC, Definition of Indigenous methodology: Research by and December 2008 Ch. 9. A. “Research involving Aboriginal Peoples: Interpreting the Ethics Framework in for Indigenous people using techniques and methods Aboriginal Contexts”. drawn from the traditions and knowledge of those ! Principles of good research questions: do not complicate the language; do not use double negatives; peoples (Evans, Hole, Berg, Hutchinson & Sookraj as seek to gain truth and clarity. cited in Denzin, Lincoln, Smith)

The Consent Process - Bonnie Healy

! The consent form should explain to the participant: the project; how the information will be Q: Our people have been studied and research to death. Under used; what is being asked of the participant; the time commitment; where the information will what paradigm has this happened? be housed; what is being consented to; liability to the researcher, the organization, the A. Dr. Ottmann: Under a Western paradigm. For the first time participant; the compensation; what is the impact of the research; who will have access to the what I see in this area of data ownership, and possession, information; how is the information protected; what is the option to withdraw; is the research Indigenous people are saying ‘no, we are not giving you access culturally relevant and valid; how can it benefit the community; what is the methodology; who unless you go through a protocol and consent process’. Some is responsible for contacting the study participants; who are the participants; what other of the old documents from the 1600s used words that perceive research exists on this subject matter. us through a different lens, words like savage. This is changing, but our people are cautious about the information they ! OCAP™ involves an additional layer of community consent in addition to the individual consent provide and are resistant to providing information because of process; this involves consent from leaders who will typically consult with Elders and the this. There is a shift and all organizations, including community; the leaders will provide approval through a Band Council Resolution. universities, are feeling this.

! Consent should be voluntary and fully informed; people should not be coerced to participate. Q Why are we so concerned about getting recognition from someone else? We have had to abide by the rules and ! If interviewing youth, an assent form is used; this is a respectful process to gain the permission regulations of others. Could we not develop our own criteria of youth participants in addition to the formal consent of their parents. and accreditation? A: Dr. Ottmann: That is part of the , ! Consent forms should be readable at a 6-8 grade reading level. Memorandum of Understanding. Part of the understanding is to not only take control of our knowledge but to house it ! Records and impact on privacy: how long is data stored; how long is it legally required to be through an Indigenous Knowledge and Wisdom Centre. There stored; is consent required to access medical records; ensure that mandatory reporting is a new wave of approaching, storing, and taking control of requirements are disclosed in the consent. our research.

! Be clear on budget issues: assess for conflicts of interest; ensure costs of tests and assessments have been considered; ensure that participant payment is included if offered; what is the financial relationship between the sponsor and the investigator.

! The study should be approved as recommended; approved pending clarification of minor issues; if the study contains significant concerns it requires a return to the Board

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 9 Treaty 8 Education OCAP™ in Action

Dale Awasis, Education Director, Treaty 8 First Nations of Alberta

Treaty 8 First Nations of Alberta (T8FNA) organization is a federally incorporated entity. The Data Policy of

T8FNA was endorsed in February, 2013. This primary purpose of the Policy is to ensure that any data collected, stored, and used must be done according to established guidelines and best practices. T8FNA: OCAP™ Principles ! Recognizes the individual sovereignty and authority of each First Nation; ! Is directly accountable to the Chiefs; Ownership ! Believes data from First Nations is sensitive, confidential, and must be protected; All data belongs to the First Nation. ! Ensures that data policies are based on the principles of OCAP™; ! Commits to collecting, storing, and using data as authorized by the individual Chief and Council on Control behalf of their membership. First Nation have control over their data. Chief and Council determine the timeframe and level of participation their First Nation. Fist Nations can opt Three Levels of Participation in or out of the agreement at their discretion. Level 1 Level 2 Level 3 Treaty 8 First Nations of Alberta will… Treaty 8 First Nations of Alberta will… Treaty 8 First Nations of Alberta will… Access ! Collect and store First Nations ! Collect and store First Nations ! Collect and store First Nations First Nation authorizes, through a Data Sharing data in a secure location in a data; data; Agreement/BCR, Treaty 8 First Nations of Alberta server specifically designated to ! Be the stewards of all data ! Be the stewards of all data (Education) to be stewards of the data that is the First Nation; collected and stored; collected and stored collected. ! Treaty 8 will not access or use the ! Access data to produce reports ! Access data to produce reports First Nation’s data. internally; externally Possession ! Provide 30 days’ notice if data is ! Provide 90 days’ notice if data is All data remains the property of the First Nation to be used; to be used and their server can be physically removed at ! Obtain permission from the First ! Obtain consent from the First anytime. Nation before sharing data Nation before sharing data externally. externally by providing specific details to the First Nation

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 10 T8FNA Data Sharing Agreement

Data that is to be Released (Level 2 OR 3) Community Responsibility Privacy ! Must be in aggregate (non-identifying) form ! Schools to have on their school enrollment ! Compliance with OCAP™ principals ! Any data sets with fewer than 6 results will sheet a statement that their child's ! Privacy policies and procedures be suppressed information will be collected for “program ! Employee/Contractor Confidentiality ! Any internal results must be labeled “for and service evaluation purposes” agreement internal use only” ! Each community to decide how T8FNA is Security Termination to engage with their community in regards ! Password protection ! Upon communication from the Chief T8FNA to data sharing initiative(s) ! Tiered access for users (to ensure users can will cease and desist any and all activity until only see information they are authorized to advised through formal letter what to do access) with the data that is stored in their server. ! SSL (Secure Socket Layer) encryption Amendments ! Data is stored in a server that is secure, ! Formal letter from Chief stating changes they maintained, and contains computer virus would like made to the original agreement countermeasures ! Timeframe ! Terms of the Agreement

Q: How does FOIP come into play with education? A: The Data Sharing Agreement includes The , other Federal legislation, plus FOIP. Every community has the right of inherent custom - the ability of the First Nation to create its own law. FOIP applies when working with the provincial government to get provincial data.

Q: Who is in the power position of holding information in the context of the collective versus the individual? A: We have to look at this in a deeper way. When it comes to the individual, who has the privacy rights. To date we have only looked at the collective. As a school authority we can approach a school for Provincial Achievement Results. The province dictates that individual consent from the parent is required to access data. We have to take this a step forward to ensure parents are aware.

Q: Is there a plan to look closer with this table at education system policies? A: At present we have our own psychologist. We do not have the same support systems that the province offers. For example the psychologist was asked for a private assessment by a family. In most cases, because students are not classified as residents of the province, we cannot bring in specialists (e.g. speech pathologists, behavioural). Our tuition agreements have to be revised as some go back to 1930. In Treaty 8 we have encouraged the First Nations to renegotiate their service agreements (tuition agreements) to incorporate transportation, wrap around services, and special education. Health, Human Resources, and Education Provincial Ministers have been meeting for two years to create a service integration model. We need to start collecting provincial data; this can be done through an agreement to share PATSI data.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 11 AFNIGC’s FNREEES and RHS Implementation Process

Melanie Parsons, Research Project Coordinator, AFNIGC Connie LeGrande, Research Associate and Project Director, AFNIGC

The AFNIGC is mandated by & accountable to the Chiefs of Alberta. A Board of Directors, comprised of two representatives from each Treaty area, in addition to a Chiefs’ Senate guide the operations of the AFNIGC. The Centre focuses on research project and partnership development. It is home of the Regional Health Survey (RHS) and First Nations Regional Early Childhood, Education and Employment Survey (FNREEES). The AFNIGC implements the First Nations Information Governance Centre’s (FNIGC) First Nations principles of Ownership, Control, Access, and Possession (OCAP™) in research projects and data management systems.

Ownership Tools for Respectful Community Engagement Relationship to traditional knowledge, data and information. ! Community letter Control ! Statement of Participation & Letter of Decline First Nations are within their rights in seeking to control aspects of ! Survey themes research and information management processes. ! FNREEES FAQ ! Band Council Resolution example Access ! Draft OCAP™ FAQ Community’s right to access, manage, and make decisions regarding their ! OCAP™/ AFNIGC Resolutions collective information.

Possession Information is in First Nation possession and protected from breach and/or misuse.

Valid/credible data can:

• Identify and verify issues, theories and perceptions • Help to proactively address issues, measure progress and capitalize on opportunities • Help to gain trust, develop effective and respectful consultations, while securing the support of key decision-makers and stakeholders • Assist in transformational change with evidence based decision making; policy development and program evaluation.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 12 Implementing the Regional Health Survey & First Nations Regional Early Childhood, Education, and Employment Survey

! Questionnaires developed with guidance from First Nation professionals, committees, and communities ! National & Regional Advisory Committee (RAC) ! Ethics Review Committee ! Randomly selected First Nations are contacted & information is shared and/or presentations offered to leadership and staff ! BCR & Data steward ! Membership Office & Human Resource Department ! Members living on-reserve that have been randomly selected to participate in voluntary survey are contacted by AFNIGC Knowledge Gatherers ! Formal consent process ! Confidentiality ! Eligible communities receive community-level report ! Protection of Individual Privacy ! Returning information to elected data steward ! National & Regional reports developed & shared ! Regional report developed with the assistance of RAC ! Regional dissemination plan developed & followed ! Survey Evaluation with communities ! Survey questionnaire evaluation and development ! Use of information

Q: Do BCR’s go to AANDC? A: The process to collect data in a community is through a BCR. The community oversees the BCR process.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 13 Assembly of Manitoba Chiefs Regional Implementation of OCAP™ RHS Themes: Leona Star, Research Associate, RHS and REEES Coordinator, Assembly of Manitoba Chiefs § Traditional Language and Culture § Traditional and Spiritual Care § Education and Economic Circumstances Assembly of Manitoba Chiefs Mandate Our Research, Our Data, Our Way § Housing and Community

§ Household and Family Networks To protect and strengthen treaty and Our people always did research and always sought out § Current and Historical Trauma inherent rights and to improve the socio- understanding. § Emotional, Behavioural and Mental Well- economic conditions of First Nations people Protected our knowledge, origin stories and songs being and communities. § Drug Use, Alcohol Consumption, OCAP™ is fundamentally tied to self-determination and self- Smoking, and Gambling governance – First Nations governments, like other governments § Sexual Health need data on their people and the preservation and development of First Nations cultures. OCAP™ allows a community § Physical Activity to make decisions regarding why, how and by whom information is collected, used and shared for research, evaluation § Weight, Diet and Nutrition and planning purposes. § Self-rated Health, Signs and Symptoms, Health Conditions

§ Injuries Regional Longitudinal Health Survey (RHS) was created by First Nations for First Nations health and wellbeing and § Disability and Activity Limitations collects information on health and living conditions for First Nations communities in 10 regions. We determine what § Maternal Child Health and Women’s information to use as First Nations. Health Issues § Western Health Care Free Prior and Informed Consent (agreement): requires both community and individual consent; must be free § Dental Care (voluntary - no pressure), prior (before any information is collected), and informed (First Nation and person needs to § Barriers to Health Services know what research purpose methods, use would be ahead of participation).

Assembly of Manitoba Chiefs Chief’s Taskforce on Health Manitoba Chiefs in Assembly Health Information “Research is a relationship Governance Committee Mandated by Manitoba Chiefs Comprised of Chiefs of First based on respect and it Constitution to carry out the Nation communities within takes time to build trust.” Mandated by Manitoba Chiefs Manitoba First Nations Health Manitoba (Elders workshop on Ethics in Assembly to provide Strategy, ten years and 2005) oversight and guidance to the beyond 2005 Grand Chief and Executive RHS and research involving Council of Chiefs serve in Manitoba First Nations Grand Chief as Ex-officio between Chiefs Assemblies member

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 14

AMC HIRGC Research Protocols Upholding OCAP™ throughout RHS Process How has RHS data been used?

1. Contact and engage AMC/Community/First Manitoba Region RHS: 2002-03 National RHS data Nation partner prior to/or at the idea or draft ! Smoking Cessation Program stage of research proposal ! Community Involvement (Leadership, Health ! Diabetes Integration Program 2. Draft proposal, involve partners in design, Directors, First Nation members) ! Home & Community Care Program include feedback ! Cultural Considerations (Gender balance, 3. Finalize proposal cultural customs, language) 2008-10 Manitoba RHS data 4. Submit proposal to AMC ! Community & regional feedback (Lessons ! Food & Insecurity data presented to United HIRGC/Community/Tribal Council obtain learned gatherings) Nations Special Rapporteur on the Right to letter of support ! Return of DATA (Returned 21/34 Community Food 5. University Research Ethics Board profiles to participating RHS Manitoba First ! Resiliency and Suicide Prevention among 6. Maintain communication/consultation/ Nations) Manitoba First Nations Youth engagement through entire research process

No Research Application is approved by University of Manitoba Research Ethics Board without a letter of support from AMC

POSSESSION: Setting up the Manitoba First Nations Research Server

• Research server established at AMC in 2010, based on the First • MFN Research July2010 • 2008-10 RHS data July 2013 Nation Information Governance Centre (FNIGC) approved data Server established released to AMC nd centre modeled after the Stats Can Research Centres at AMC (only data • 1997-98 & 2002-03 from the Naonal • 2 Research Server stored on server no RHS data released RHS team installed at AMC , • Access is restricted to a locked down computer with no access soware) to AMC from U of M data going directly to the internet or printers and disabled USB ports to AMC • Currently holds RHS 1997-98, 2002-03 & 2008-10 datasets June 2010 Jan 2011 • Anyone who is in contact with the RHS datasets must sign a confidentiality agreement

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 15

Defining ACCESS protocols & procedures for MFN Defining who and how MFN RHS Data is Testing Data Access RHS data access ACCESSED

! Confidentiality agreements signed ! Once approved by AMC HIRGC, researcher Participating Community ! 2 restricted computers signs a Confidentiality Agreement ! Signed BCR and identified data steward within ! RHS Community Survey 2008-10 ! Onsite at AMC under supervision of Manitoba community ! MFN RHS team uploaded and extracted data First Nations RHS team External Researcher from computers ! Restricted computer (no access to internet, disk ! Access is restricted to those research drives disabled, no access to printer) applications reviewed and approved by AMC ! AMC Research Team will upload RHS variables HIRGC specified in research application and extract ! Researcher works on-site at AMC analyzed data from restricted computer Tribal Council ! Signed data sharing agreement with participating RHS communities

Future of Manitoba First Nations Research Server First Nations Statistical Centre of Excellence

1. AMC Research team will continue to: ! Based on AMC Health & Wellness Strategy ! Work with AMC-HIRGC; ! Supported by resolution passed by Chiefs in Assembly in June 2012 ! Protect the confidentiality of RHS participants; ! Building on processes and protocols established through MFN Research Server ! Protect the quality and integrity of RHS data. ! Continuing to assert First Nations self-determination over information by 2. Develop a list of priority research areas based on the needs of MFNs adhering to OCAP™, FPIC & First Nation Ethical Standards. 3. MFNs and researchers will have the option to store their own research data on the MFN Research Server (Possession)

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 16 Looking for a more streamlines approach: Co-Management and OCAP™

Nathalie Lachance, Director of Strategic Policy, FNIHB Bonnie Healy, Operations Manager AFNIGC

Currently involved in two parallel processes: Data collection, analysis, dissemination and storing through the Co- OCAP™ is about: Management structure; and access to the Indian Registry System data for health assessment and surveillance.

Alberta Leadership OCAP™ Resolution – March 2010 RESPECT for First Nations self- determination in information The Centre will promote, protect and advance the management First Nations Ownership, Control, Access, and Possession (OCAP™) principles, the Inherent Right to RESPECTING First Nation’s self-determination and jurisdiction in research and jurisdiction over information information management.

Alberta Regional Process

Seeking to establish a process that will ensure: ! Development/implementation of a streamlined process that will be used by all sub-committees and working groups ! Outlining an approval process that will provide for timely decisions as well as ensure respectful information sharing

! Respectful data collection with informed consent Next steps: ! Meaningful data analysis and recommendations ! Development of templates and checklist ! Appropriate dissemination of data and findings ! Meeting with Co-Management Co-Chairs ! Safe storage and/or destruction of the data ! Approval by Co-Management collected

Access to the Indian Registry System: Health Assessment and Surveillance Just Beginning … Purpose … Numbers can held in many ways … ! Working Group being put together and will include: ! Public Health Surveillance: Alberta Health; Alberta ! Setting priorities Treaty representatives; Alberta First Nations Health Services; First Nations and Inuit Health ! Health planning Information Governance Centre; Alberta Health; Branch, Health Canada (collaborative work through ! Disease investigations Health Canada; Aboriginal Affairs and Northern co-management) ! Evaluation of programs Development Canada ! Mandated by law to analyse, interpret, and ! Raising funds ! We will work together to: apply for access to the disseminate health data and information for the ! Research Indian Registry System and develop an Alberta First purpose of public health action. Nations Data Governance Agreement ! NOT research!

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 17 Current Issues

It is becoming more difficult to provide accurate First Nations specific numbers… ! Health premiums not collected after 2009 ! First Nations identifying information no longer updated

Ownership, Control, Access, Possession (OCAP™) ! Ensure that accountability, respect, ethics, values and information processes are protected and advanced

Q: When you are embarking on an initiative, where is the onus to ensure that the OCAP™ principles are adhered to? A: When we do co-management it is the First Nations and FNIHB who will work together. What we are looking to is to streamline and clarify the process. This process has to be respectful and will be meaningful to all Alberta First Nations

Q: What is the role of the sub-committees? Do we need to now establish an Ethics Committee? A: We are still in discussions. We need to determine the role of an Ethics Committee and how it works. We are still working our way through this. The fact that we are aware that we can do better than in the past and that we can do better now is crucial.

Q: Is the Health Surveillance Report rolled up aggregately? A: Yes. The next version will include data on health determinants. It is one tool to share surveillance data. In the negotiations of this work they are already doing this work in some communities. This will contribute to First Nations program planning and evaluation.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 18 Ethical Space and Ceremony

Dr. Reg Crowshoe, Elder, Piikani Blackfoot Brent Scout, Grand Chiefs’ Liaison, Treaty 7

The purpose of the Elders’ forum today was the negotiation and development of a process for cultural interpretation of ethical order. We come together in ceremony to demonstrate reciprocity and respect for mutual benefit. Developing ethical space as ceremony has been fundamental to the work of AFNIGC. Respect is intrinsic in our creation stories and within in our relationships with each other. We need to lend voice to, and formulate, this in order to develop frameworks and take these concepts to our communities.

Our creation stories teach about dispute resolution, discipline, and the consequences of taking from a community without asking. The absence of these teachings has resulted in a of distrust. Our stories, our belief systems, our oral processes are fundamental to the traditional concepts of ownership. Our Thunder Pipe stories talk about justice, integrity, and honourable practices. Ceremony holds these disciplines, so should ethical spaces and our ability to work together and move forward.

Elders spoke about white man thinkers and Indian thinkers. We start by understanding each other, little by little. We have a lot to share from our culture and a lot to work with.

Western Indigenous “God gave dominion to man” “Creator created man as equal” “Dominion” - man superior to all creation “Equal” - man equal to all creation “Dominion” concept defines thinking “Equal” concept defines thinking Dominion Equality Language and “written” system Language and “oral” system Church, education, government Ceremonies, education, government Hierarchical structure of practice Circle structure of practice “Ownership” - Authority “Stewardship” – Authority Written documentation Songs and oral documentation License, permits, and certificates Transfers, ceremony, and songs

We validate information to be real through our oral practices, we look at how we pass ownership from one person to another. In Indigenous culture our oral systems are ceremony. Being equal is how we understood all creation, so as an example we needed authorities from the buffalo through traditional knowledge and through song and ceremony in order to hunt buffalo. If we were given the authority to hunt buffalo, we shared that with the community. In Western culture ownership is identified through written documentation. These are representations of licenses like driving, permits, and certificates. When we talk about the concept of equality in Indigenous culture we are talking about the interconnection of all things; the people, the land, the animals, the water. Being given a song through a society is like being given a certificate or license that proved one was capable.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 19 Cultural Interpretation We can literally translate words but we translate and interpret from our cultural perspective

Parallel meanings There are regulated systems in our ways as well as a western regulated systems

Cultural Regulated System For example the seniors program from Ottawa has regulations, but we also have our oral systems related to seniors

Cultural confusion When you put both cultures together, what are they really saying? We still struggle with these interpretations today.

The demands of industry do not align with our ways of conveying information. So industry believes they have fulfilled consultation requirements while First Nations processes do not concur that information has been transferred in a culturally appropriate way. We have traditional natural laws that come from creation and environment all being equal. Equality is where we get our authorities. Stories, knowledge, ceremonies are geographically based which makes all of our indigenous cultures unique. It is important that we understand that songs are physical documentation of rights and privileges.

Practices Systems Environment

Transfer Rules Stories of Creation, Napi, Kutuis and Bundle Land VALS Process creations People Oral Process (existing) Belief systems Water Circle Structures (tech) Stories of validation Animals Develop Implementation practices (tech) for Songs and languages Resources Operations, Management, Create Consensus

Oral implementation laws Absolute Laws Natural Laws Treaty song

Our stories define our laws. The parallel with Christianity is the absolute laws that were given to Moses. Information is made real by the connection to the language and the environment.

Now we have to look at how we culturally transfer our information today. Knowledge and data processes include: rules and processes around societies, collective mandates, consent, privacy laws, data sharing agreements, transfer of knowledge to researchers. These can be explained by paralleling our First Nations oral and cultural processes with Western written processes.

We need to look at processes and models to determine how we can use these in developing ethical spaces. When we talk about ethical space, our culture and language help us move ahead.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 20 We must use our governance systems to secure ownership of that which The circle in our Tipi Floor Plan Model represents authorities which enable defines who we are. We can use any of our societies to stamp ownership the sharing and use of information. We need facilitators who can operate a on our knowledge and information. circle and represent a mandate in the circle. Hosts are concepts. Anyone can be a host whether health, justice, or education. Our circle is our place We live within the boundaries of our territories, our environment, and of ethical practices. Our stories are our Elders; the core group can put the our belief systems. When information is presented this is brought into the system together and culturally implement and interpret what we need to societies who sort the information, good from bad and present to the say. Validating information happens through our recorders. The process to leadership who make the decisions. validate information is through rounds and following steps of venue, language, action, and song. This makes ownership real. Information is the new resource that we have to develop as the inputs and give to our leaders as outputs. We make this information real We have a core group that represent our three through our management teams. Our management teams have the Treaty areas and who can translate information understanding of how to use inputs and outputs in ways that lead to to our Elders and our people. decision making. We have to look at our cultural interpretations for our organizations.

Natural Law Absolute Law Theoretical Law Practice Laws Environment Stories Shared purpose Ethical Circle Space Territory Honour, Respect Complex organization Facilitator Permeable Truth, respect Knowledge centricity Host Boundaries Value, Knowledge Multi-dimensional Support Creator Bundle Creation Stories Bundle Creation Stories Elder

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 21 Participants

Last Name First Name Organization Abraham Karen Frog Lake Beaver Mike Elder Bigstone Cree Nation Bird Anne Yellowhead Tribal Council Corrigan Nikki Courtorielle Doris Elder, Crowshoe Reg Elder, Piikani Blackfoot Crowshoe Rose Elder, Piikani Blackfoot Heavy Runner Tobi Treaty 7 Iron Shirt Bruce Treaty 7 Kahlina Vera Yellowhead Tribal Council Lanouette Jerry FNIGC Lightning Gail Maskwacis Health Loh Kimberley Health Canada Many Heads Janis Treaty 7 McDonald Sherry Treaty 6 Morin Connie Kehewin Health Services Ottmann Jacqueline University of Calgary Paul Barb HD, Alexis Health Services Perry Roxanne Frog Lake Saddleback Bonita Maskwacis Health Services Schnurr Marcella Treaty 8 First Nations Scout Brent Treaty 7 Management Corporation Scout Lance Blood Tribe Sitting Eagle Margo Treaty 7 Health Secretariat Smalllegs Clayton Chief, Starr Leona Presenter Swampy Beverly HCoM Thomas Arleen Elder, Saddle Lake First Nation Wadsworth Bill Blood Tribe Wale Susan Treaty 8 First Nation Finance Wood Charles Elder, Saddle Lake First Nation Wood Mary Elder, Saddle Lake First Nation Wuttunee Peyasu HCoM

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 22 Reference Documents

This documentation was provided to session participants on memory sticks distributed at the end of the workshop.

PowerPoint Presentations:

AFNIGC’s Process with FNREEES/RHS Implementation. Connie LeGrande, Research Associate & Project Director. Melanie Parsons, Research Project Coordinator. The Alberta First Nations Information Governance Centre. February 20, 2014.

AMC Regional Implementation of OCAP™, Leona Star, Assembly of Manitoba Chiefs.

Bigstone Health Commission OCAP™ Presentation. Lorraine Muskwa, Chief Operating Officer, Bigstone Cree Nation. February 19, 2014.

Engaging Indigenous Methodology: Protecting our Knowledge, Telling our Stories, Strengthening our Communities. OCAP™, in action. Dr. Jacqueline Ottmann. University of Calgary. January 19, 2014.

Ethics and Ceremony: Between Worldviews. Dr. Reg Crowshoe, Piikani Nation, University of Calgary. Brent Scout, Kainai Nation, Treaty 7 First Nations Chiefs Association. February 19 and 20, 2014.

Ethics Review Guidelines. Bonnie Healy, Operations Manager, The Alberta First Nations Information Governance Centre. February 19-20, 2014.

First Nations Privacy Laws. Bonnie Healy, Operations Manager, The Alberta First Nations Information Governance Centre. February 19-20, 2014.

Implementing OCAP™ Leadership Resolution / Ethical Space as Ceremony and OCAP™. Brent Scout. Treaty 7 Grand Chiefs Liaison. February 19, 2014.

Looking for a More Streamlined Approach: Co-Management and OCAP™. Nathalie Lachance, FNIHB. Health Co-Management Secretariat. February, 2014.

OCAP™ and Privacy: a legal framework. Krista Yao, Nadjiwan Law Office. Nipissing First Nation. North Bay, ON. September 23, 2011.

The First Nations Principles of OCAP™. Jerry Lanouette, Development and Training Coordinator. The First Nations Information Governance Centre. Ottawa, On. February 19, 2014.

Treaty 8 First Nations of Alberta Data Policy. February 20, 2014.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 23 Ethics Review Templates:

Pediatric Consent Form Template. November 26, 2002.

Consent Form Template. CHREB. August, 2008.

Surrogate Consent Form Template. CHREB. August, 2008.

Assents for Minors. CHREB. January 2013.

CHREB Ethics Review Guidelines. CHREB. July, 2013.

Privacy Law Templates:

Barriers and Levers for the Implementation of OCAP™. Krista Yao, Nadjiwan Law Office for The First Nations Information Governance Centre. February, 2013.

Draft Law for the Protection of Personal Privacy. Undated.

Framework for a Data Sharing Agreement Version 0.1. Krista Yao, Nadjiwan Law Office. February 7, 2014.

Ownership, Control, Access and Possession (OCAP™): The Path to First Nations Information Governance. First Nations Information Governance Centre. March 15, 2013.

Protecting Health Information with a First Nations Environment. Version 4. Undated.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 24 Publications and Resources:

CIHR Guidelines for Health Research Involving Aboriginal People. Canadian Institutes of Health Research. Ottawa. May 2007.

Considerations and Templates for Ethical Research Practices. First Nations Centre. Ottawa. April, 2007.

First Nations Regional Health Survey (RHS). Pace. D. & Konczi, A. The Alberta First Nations Information Governance Centre. Alberta Report 2012.

Freedom of Information and Protection of Privacy Act. Revised Statutes of Alberta 2000. Ch. F-25. December 11, 2013.

Health Information Act. Revised Statutes of Alberta 2000. Ch. H-5. With Amendments in force as of May 16, 2003.

Health Information Act: Guidelines and Practices Manual. Government of Alberta. March, 2011.

Hierarchies, Partnerships or Commons?: Identifying Useful Approaches to the Governance of Indigenous Data. Jodi Bruhn, Stratéjuste. PowerPoint presentation. September, 2013.

Identifying Useful Approaches to the Governance of Indigenous Data and Information. Jodi Bruhn, Stratéjuste. November, 2013.

OCAP™ FAQ. Alberta First Nations Information Governance Centre. Undated.

Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada,and Social Sciences and Humanities Research Council of Canada. December, 2010.

Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Medical Research Council of Canada Natural Sciences and Engineering Research Council of Canada Social Sciences and Humanities Research Council of Canada. August, 1998.

Using Community-Based Participatory Research to Address Health Disparities. July 2006. Wallerstein & Duran. Health Promotion Practice. July 2006. 7(3).

Yukon First Nations; Research: Project Information Sheet and Checklist. Undated.

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 - 20, 2014 Edmonton, Alberta 25

Head Office: South Office: North Office: #400 9911 Chula Blvd. Suite 111, 535 8th Avenue SE 16310-100 Avenue Tsuu T’ina, AB T2W 6H6 Calgary, AB T2G 5S9 Edmonton, AB T5P 4X5

Phone: 403-539-5775 E-mail: [email protected]

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