final ocap in action workshop report acs editsafnigc.ca/main/includes/media/pdf/final ocap in action...

OCAP™ IN ACTION WORKSHOP February 19 -‐ 20, 2014 REPORT

OCAP™ is a trade-‐mark of the First Nations 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 Calgary, AB T2G 4W6 Ph. 403.640.0515 Cell. 403.850.9791 [email protected]

OCAP™ IN ACTION WORKSHOP REPORT FEBRUARY 19 -‐ 20, 2014 Edmonton, Alberta 1

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 Treaty 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


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, Treaty 7 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 Cree Nation

Engaging in Indigenous Methodology. Survey tools: culturally relevant; effective; appropriate. Consent Process: forms, implementation, appropriate use, youth consent, parental/guardian consent

Dr. Jacqueline Ottmann, Faculty of Education, 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

Co-‐Management Streamlined Approach to OCAP™ Nathalie Lachance, FNIHB, & Bonnie Healy, AFNIGC

Ethical Space and Ceremony Elder Reg Crowshoe, Piikani Blackfoot

Round Table Debate focused on negotiating an OCAP™ Agreement between: Industry and Government Stakeholders; and First Nation Negotiators Elder Reg Crowshoe, Piikani Blackfoot


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 OCAP™ to determine our own collective paths

! The ongoing work is to advance resolutions and the development of a regional centre

! Ownership is about the relationship of a First Nations community to its cultural knowledge, data and information

! Control is First Nations’ aspirations and rights to regain and retain; access to information and data

! Access is the right to determine who accesses data ! Possession is about stewardship ! Ethical Space and Ceremony -‐ place of learning; place of respect and discipline; Our Elders carry forth our ceremony; Our ethical space is what connects us to our ancestors

! Concept of Ethical space as ceremony; Willie Ermine’s thesis on Ethical Order outlines that ethical space involves a process for ethical engagement for research and where mutual respect and reciprocity exists. When two worlds converge, Indigenous and Western, we can develop a space for respect; this is the space where the practice of OCAP™ can be developed

! OCAP™ principles can be used in all aspects of research and information, health, education, etc.

! Principles of OCAP™ have always been within First Nations people ! Ethical spaces explore existing power structures; misconceptions; cultural confusion; building cultural safety and breathing life into OCAP™

! We have systems in place across the country: oral traditions, songs, and descriptions of our ways of knowing

! Our ways of knowing are based on our world views and survival ! There are many commonalities between First Nations systems and culture; when our systems are compromised it is hurtful and harmful; we need to give voice to the people through creating and participating in ethical space

! Through the ages we have studied our world; our ways of interpreting data have evolved into our ways of governance and laws

! We survived on our ability to implement; we used oral models to interpret data and to formulate a readiness plan; this is what OCAP™ is about: about collecting and utilizing data respectfully

! OCAP™ is also about addressing oversight of research and providing accountability back to leadership and communities who own their collective data

! Data can be a tool for collective change ! Provides the ability to share our stories and important information; to implement ideas and connections; to make informed decisions; this gives voice and improves the health and wellbeing of our people

! People who suffer from intergenerational traumas are impacted by the destruction of their social structures and relationships; it is important that the voice of people are heard as this will drive policy

! Why is OCAP™ important? It strives for true transformational change; to make sense of the data streams; prevents cultural harm from researchers; to take ownership of our self-‐determination; implementation evokes cultural change; to understand who we are and how we are


! Benefits include: rebuilding community trust; control of our own analysis; building understanding of protocols and processes; engaging leadership, researchers, and communities on mutually beneficial approaches while creating ethical space; using cultural parallels to come to the same conclusion and accomplish deliverables; carrying out research by First Nations people; reflecting our world views; research that benefits our communities; invitation and community consent to conduct research; knowledge transfer stays within the community who then decide how to store and use the data; data impacts policy and gives voice to First Nations; and backs up our requests for programs and services

! Important to negotiate trust and engage people ! Implementation is about exercising jurisdiction and self-‐government ! Decisions need to be based on credible information ! Growing numbers of First Nations scholars who are contributing to the body of information

! Communities are becoming better aware and more engaged in the collection and governance of information

! Research is based on respectful engagement ! Various and distinct world views of First Nations are respected in developing processes and policies

! Respectful relationships with governments, academia, and institutions through observation of OCAP™ principles

! Exploring the development of an Alberta Research Ethics Board to provide oversight of research

! Culture and ethics are based on the negotiation and interpretation of ethical engagement and order

! Ethical spaces are fundamental to policies, procedures, relationships, cultural safety, and the respect of First Nations’ traditions

! Ethical engagement and cultural interpretation validation is based in oral implementation practices of: Language , Actions, Songs

“The contrasting of world views creates an

ethical space … to protect our knowledge”

Willie Ermine


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 decisions regarding why, how and by whom information is collected, used or shared. It reflects a First Nation’s commitment to use and share information in a way that brings benefits to the community, while minimizing harm. It expresses First Nations jurisdiction over information about First Nations. All First Nations own OCAP™. The interpretation of OCAP™ is unique to each First Nation community or region.

Ownership: The relationship of a First Nations community to its cultural knowledge/ data/ information. Control: The aspirations and inherent rights of First Nations to maintain and regain control of all aspects of their lives and institutions, which also extends to information and data. First Nations people, their communities and representative bodies must control how information about them is collected, used and disclosed. Extends to all aspects of information management, from collection of data to the use, disclosure and ultimate destruction of data.

Access: First Nations must have access to information and data about themselves and their communities, regardless of where it is held. The right of First Nations communities and organizations to manage and make decisions regarding who can access their collective information. Possession: The state of stewardship of data. First Nation possession puts data within First Nation jurisdiction and therefore, within First Nation control. It is the mechanism to assert and protect ownership and control.

Follow-‐up Questions and Answers Q: Do we have a FN community involved with OCAP™ in Alberta? A: Yes Bigstone and Siksika

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

Mission The First Nations Information Governance Centre, under the guidance of its member organizations; will build capacity and provide credible and relevant information on First Nations using the highest standards of data research practices, while respecting the rights of First Nations self-‐determination for research and information management and in true compliance with the First Nations principles of Ownership, Control, Access and Possession (OCAP™).


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: ! Canada privacy laws include: Access to Information Act;

Personal Information Protection; Electronic Documents Act, Library and Archives of Canada Act

! Alberta acts include: Freedom of Information and Protection Act; Health Information Act

! There is additional Alberta legislation: Freedom of Information Act Harm Clause 21(1) (a) (b) and 21(3) that acknowledge First Nations as governments with the ability to have an OCAP™ compliant relationship with the province. It is recommended that everyone become familiar with this legislation.

! We have an established OCAP™ relationship with the province ! The language of OCAP™ can be included in all agreements with

government, the housing of information, and requests to access First Nations information. A respectful place to work out these relationships in the context of the legislation can be found.

! Terms used in Personal Impact Assessments: data sharing agreement, license to use, data governance agreement, service agreements, memorandum of understanding


Bigstone OCAP™ in Action Lorraine Muskwa, Chief Operating Officer, Bigstone Cree Nation Q: Use of regional health services data that was returned back to the community. How has the

data been used and protected? A: Bigstone developed a report card on how community health was being measured. The RHS

data met many of the themes in the Bigstone report card. The data agreements were entered into with a BCR and information flows and is housed in a secure manner. There is great RHS data and good data measures. The process is costly but the information that the community acquires is valuable.

Q: What do you do about members who are living in other countries? A: Bigstone does not cover anything outside of Canada. Band members are advised to get

insurance when abroad. The exception is for education travel. Q: Have you denied anyone and do you have an appeal process? A: Yes we have denied. It is in how you talk to people to make them understand. The appeal

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 Commission. If it is denied through this process then our staff looks for other options. orthodontics are denied. We send these to Ottawa and are looking for our own consultant who will address these claims. If there were an orthodontist in our office these would not be denied.

Q: Are you a payer last resort in the area of 3rd party insurance? 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 only reimburse for what our policy states. It is hard to determine which band members have 3rd party insurance.

As of April 2013 Bigstone took over the transfer of non-‐insured health benefits. The pilot began in 2003.

All organizations, whether Facebook, credit card companies, life insurance, require the use of personal information authorization of the individual. They control the data, have access, exercise control, and protect their data.

Bigstone houses a great deal of data and is committed to keeping information safe. The data is kept safe for their members.

Members sign a consent form which provides authorization for the collection and use of data for purposes related to the administration and delivery of health services.

The consent does not authorize the transfer or exchange of information. Any band member can access their information and can withdraw consent at any time with written notice.

Bigstone can analyze 12 years of data to enhance services to community members.

How Bigstone implements OCAP™ principles: Bigstone has done a great job protecting the privacy of individuals


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 engaging and standing firm on regaining control of our indigenous methodologies.

Protocols are those things we do to access knowledge and show respect. This is inherent within indigenous ways of being and doing. Western ways of being and doing are starting to understand the importance of protocol in research and in our daily lives.

Quantitative data is linked to observation in data collection.

We have to think beyond ourselves back to the past and forward to the future.

Data can have a significant impact on decision making. Historically, indigenous people have been negatively impacted by data but currently taking control of our information.

Research begins with asking: who we are, where do we come from, where are we going, what are our responsibilities.

It is important to be aware of the good that can result from research as well as the harm.

In indigenous perspectives there is power in stories and listening. Within indigenous perspective time is not linear but collapsed where the past, present, and future are captured in every moment. This impacts the approach to research.

Differences between Western and Indigenous research design and protocol: Western is a researcher orientation; Indigenous is focused on what the community requires in order to get access to information and recognizes that gaining the truth takes time and respect.

You have to listen, observe, and be in relationship with the community otherwise the research results are invalid because the researcher interprets it from his or her worldview.

Historically, research has been about power and privilege; now this is shifting. The message of Indigenous methodology is to bring it back to centre. Research should be based on respect and a mutual seeking of an answer or truth.

Researchers should always be active listeners who are in “learning mode”.

If the community is strengthened then everyone benefits including the researchers.

Change is inherent in our environment as Indigenous people. There are many examples of adaptivity as our learning comes from the land and our environment.

Research has to promote a sense of health and theory:

! it has to be liberating to be emancipatory; to be decolonized

! it should be transformational for the individual, the community, the environment

! it should move from survival to recovery to development

! it should do no harm ! it should always be in relationship building

mode

Questions that researchers should be asking (from Smith “Research is Ceremony”) should be based on respect, reciprocity, and responsibility.

There are several examples of indigenous communities who have developed their own ethics and application processes for researchers. Two are:

! A Mi'kmaq Ethics Committee has been appointed by the Sante' Mawio'mi (Grand Council) to establish a set of principles and protocols that will protect the integrity and cultural knowledge of the Mi'kmaq people. This is found at the Cape Breton University website under “Ethics Watch”.

! The Inuit lay claim through the Education Act to access to their information and knowledge through research. Their approach and process is unique.


! Researchers have to understand that a community’s protocols supersede that of post-‐secondary institutions. Refer to Government of Canada Panel of Research Ethics, Draft 2nd Edition of the TCPC, December 2008 Ch. 9. A. “Research involving Aboriginal Peoples: Interpreting the Ethics Framework in Aboriginal Contexts”.

! Principles of good research questions: do not complicate the language; do not use double negatives; seek to gain truth and clarity.

The Consent Process -‐ Bonnie Healy

! The consent form should explain to the participant: the project; how the information will be used; what is being asked of the participant; the time commitment; where the information will be housed; what is being consented to; liability to the researcher, the organization, the participant; the compensation; what is the impact of the research; who will have access to the information; how is the information protected; what is the option to withdraw; is the research culturally relevant and valid; how can it benefit the community; what is the methodology; who is responsible for contacting the study participants; who are the participants; what other research exists on this subject matter.

! OCAP™ involves an additional layer of community consent in addition to the individual consent

process; this involves consent from leaders who will typically consult with Elders and the community; the leaders will provide approval through a Band Council Resolution.

! Consent should be voluntary and fully informed; people should not be coerced to participate.

! If interviewing youth, an assent form is used; this is a respectful process to gain the permission

of youth participants in addition to the formal consent of their parents.

! Consent forms should be readable at a 6-‐8 grade reading level.

! Records and impact on privacy: how long is data stored; how long is it legally required to be stored; is consent required to access medical records; ensure that mandatory reporting requirements are disclosed in the consent.

! 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

Q: Our people have been studied and research to death. Under what paradigm has this happened?

A. Dr. Ottmann: Under a Western paradigm. For the first time what I see in this area of data ownership, and possession, Indigenous people are saying ‘no, we are not giving you access unless you go through a protocol and consent process’. Some of the old documents from the 1600s used words that perceive us through a different lens, words like savage. This is changing, but our people are cautious about the information they provide and are resistant to providing information because of this. There is a shift and all organizations, including universities, are feeling this.

Q Why are we so concerned about getting recognition from

someone else? We have had to abide by the rules and regulations of others. Could we not develop our own criteria and accreditation?

A: Dr. Ottmann: That is part of the First Nations in Alberta, Memorandum of Understanding. Part of the understanding is to not only take control of our knowledge but to house it through an Indigenous Knowledge and Wisdom Centre. There is a new wave of approaching, storing, and taking control of our research.

Definition of Indigenous methodology: Research by and for Indigenous people using techniques and methods drawn from the traditions and knowledge of those peoples (Evans, Hole, Berg, Hutchinson & Sookraj as cited in Denzin, Lincoln, Smith)


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:

! Recognizes the individual sovereignty and authority of each First Nation; ! Is directly accountable to the Chiefs; ! Believes data from First Nations is sensitive, confidential, and must be protected; ! 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

behalf of their membership.

Three Levels of Participation Level 1 Level 2 Level 3

Treaty 8 First Nations of Alberta will… ! Collect and store First Nations

data in a secure location in a server specifically designated to the First Nation;

! Treaty 8 will not access or use the First Nation’s data.


data; ! Be the stewards of all data

collected and stored; ! Access data to produce reports

internally; ! Provide 30 days’ notice if data is

to be used; ! Obtain permission from the First

Nation before sharing data externally.


data; ! Be the stewards of all data

collected and stored ! Access data to produce reports

externally ! Provide 90 days’ notice if data is

to be used ! Obtain consent from the First

Nation before sharing data externally by providing specific details to the First Nation

OCAP™ Principles Ownership All data belongs to the First Nation. Control First Nation have control over their data. Chief and Council determine the timeframe and level of participation their First Nation. Fist Nations can opt in or out of the agreement at their discretion.

Access First Nation authorizes, through a Data Sharing Agreement/BCR, Treaty 8 First Nations of Alberta (Education) to be stewards of the data that is collected.

Possession All data remains the property of the First Nation and their server can be physically removed at anytime.


T8FNA Data Sharing Agreement Data that is to be Released (Level 2 OR 3) ! Must be in aggregate (non-‐identifying) form ! Any data sets with fewer than 6 results will be suppressed

! Any internal results must be labeled “for internal use only”

Termination ! Upon communication from the Chief T8FNA will cease and desist any and all activity until advised through formal letter what to do with the data that is stored in their server.

Amendments ! Formal letter from Chief stating changes they would like made to the original agreement

! Timeframe ! Terms of the Agreement

Community Responsibility ! Schools to have on their school enrollment sheet a statement that their child's information will be collected for “program and service evaluation purposes”

! Each community to decide how T8FNA is to engage with their community in regards to data sharing initiative(s)

Privacy ! Compliance with OCAP™ principals ! Privacy policies and procedures ! Employee/Contractor Confidentiality agreement

Security ! Password protection ! Tiered access for users (to ensure users can only see information they are authorized to access)

! SSL (Secure Socket Layer) encryption ! Data is stored in a server that is secure, maintained, and contains computer virus countermeasures

Q: How does FOIP come into play with education? A: The Data Sharing Agreement includes The Indian Act, 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.


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 Relationship to traditional knowledge, data and information.

Control First Nations are within their rights in seeking to control aspects of research and information management processes. Access Community’s right to access, manage, and make decisions regarding their collective information. Possession Information is in First Nation possession and protected from breach and/or misuse.

Tools for Respectful Community Engagement

! Community letter ! Statement of Participation & Letter of Decline ! Survey themes ! FNREEES FAQ ! Band Council Resolution example ! Draft OCAP™ FAQ ! OCAP™/ AFNIGC Resolutions

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.


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.


Assembly of Manitoba Chiefs Regional Implementation of OCAP™ Leona Star, Research Associate, RHS and REEES Coordinator, Assembly of Manitoba Chiefs

Our Research, Our Data, Our Way Our people always did research and always sought out understanding. Protected our knowledge, origin stories and songs OCAP™ is fundamentally tied to self-‐determination and self-‐governance – First Nations governments, like other governments

need data on their people and the preservation and development of First Nations cultures. OCAP™ allows a community to make decisions regarding why, how and by whom information is collected, used and shared for research, evaluation and planning purposes.

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

Assembly of Manitoba Chiefs Mandate To protect and strengthen treaty and inherent rights and to improve the socio-‐economic conditions of First Nations people and communities.

RHS Themes: § Traditional Language and Culture § Traditional and Spiritual Care § Education and Economic Circumstances § Housing and Community § Household and Family Networks § Current and Historical Trauma § Emotional, Behavioural and Mental Well-‐

being § Drug Use, Alcohol Consumption,

Smoking, and Gambling § Sexual Health § Physical Activity § Weight, Diet and Nutrition § Self-‐rated Health, Signs and Symptoms,

Health Conditions § Injuries § Disability and Activity Limitations § Maternal Child Health and Women’s

Health Issues § Western Health Care § Dental Care § Barriers to Health Services

Assembly of Manitoba Chiefs Health Information Governance Committee Mandated by Manitoba Chiefs in Assembly to provide oversight and guidance to the RHS and research involving Manitoba First Nations

Chief’s Taskforce on Health Mandated by Manitoba Chiefs Constitution to carry out the Manitoba First Nations Health Strategy, ten years and beyond 2005 Grand Chief as Ex-‐officio member

Manitoba Chiefs in Assembly Comprised of Chiefs of First Nation communities within Manitoba Grand Chief and Executive Council of Chiefs serve in between Chiefs Assemblies

“Research is a relationship based on respect and it takes time to build trust.” (Elders workshop on Ethics 2005)


AMC HIRGC Research Protocols 1. Contact and engage AMC/Community/First Nation partner prior to/or at the idea or draft stage of research proposal

2. Draft proposal, involve partners in design, include feedback

3. Finalize proposal 4. Submit proposal to AMC HIRGC/Community/Tribal Council obtain letter of support

5. University Research Ethics Board 6. Maintain communication/consultation/ engagement through entire research process

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

Upholding OCAP™ throughout RHS Process Manitoba Region RHS:

! Community Involvement (Leadership, Health Directors, First Nation members)

! Cultural Considerations (Gender balance, cultural customs, language)

! Community & regional feedback (Lessons learned gatherings)

! Return of DATA (Returned 21/34 Community profiles to participating RHS Manitoba First Nations)

How has RHS data been used? 2002-‐03 National RHS data

! Smoking Cessation Program ! Diabetes Integration Program ! Home & Community Care Program

2008-‐10 Manitoba RHS data

! Food & Insecurity data presented to United Nations Special Rapporteur on the Right to Food

! Resiliency and Suicide Prevention among Manitoba First Nations Youth

POSSESSION: Setting up the Manitoba First Nations Research Server

• MFN Research Server established at AMC (only data stored on server no sosware)

June 2010

• 1997-‐98 & 2002-‐03 RHS data released to AMC from U of M

July2010 • 2008-‐10 RHS data released to AMC from the Natonal RHS team

Jan 2011

• 2nd Research Server installed at AMC , data going directly to AMC

July 2013

• Research server established at AMC in 2010, based on the First Nation Information Governance Centre (FNIGC) approved data centre modeled after the Stats Can Research Centres

• Access is restricted to a locked down computer with no access to the internet or printers and disabled USB ports

• Currently holds RHS 1997-‐98, 2002-‐03 & 2008-‐10 datasets • Anyone who is in contact with the RHS datasets must sign a confidentiality agreement


Testing Data Access ! Confidentiality agreements signed ! 2 restricted computers ! RHS Community Survey 2008-‐10 ! MFN RHS team uploaded and extracted data from computers

Defining ACCESS protocols & procedures for MFN RHS data access

! Once approved by AMC HIRGC, researcher signs a Confidentiality Agreement

! Onsite at AMC under supervision of Manitoba First Nations RHS team

! Restricted computer (no access to internet, disk drives disabled, no access to printer)

! AMC Research Team will upload RHS variables specified in research application and extract analyzed data from restricted computer

Defining who and how MFN RHS Data is ACCESSED Participating Community ! Signed BCR and identified data steward within

community External Researcher

! Access is restricted to those research applications reviewed and approved by AMC HIRGC

! Researcher works on-‐site at AMC Tribal Council

! Signed data sharing agreement with participating RHS communities

Future of Manitoba First Nations Research Server 1. AMC Research team will continue to:

! Work with AMC-‐HIRGC; ! Protect the confidentiality of RHS participants; ! Protect the quality and integrity of RHS data.

2. Develop a list of priority research areas based on the needs of MFNs 3. MFNs and researchers will have the option to store their own research

data on the MFN Research Server (Possession)

First Nations Statistical Centre of Excellence ! Based on AMC Health & Wellness Strategy ! Supported by resolution passed by Chiefs in Assembly in June 2012 ! Building on processes and protocols established through MFN Research Server ! Continuing to assert First Nations self-‐determination over information by

adhering to OCAP™, FPIC & First Nation Ethical Standards.


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-‐Management structure; and access to the Indian Registry System data for health assessment and surveillance.

Alberta Leadership OCAP™ Resolution – March 2010

The Centre will promote, protect and advance the First Nations Ownership, Control, Access, and Possession (OCAP™) principles, the Inherent Right to self-‐determination and jurisdiction in research and 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 ! Meaningful data analysis and recommendations ! Appropriate dissemination of data and findings ! Safe storage and/or destruction of the data collected

Next steps: ! Development of templates and checklist ! Meeting with Co-‐Management Co-‐Chairs ! Approval by Co-‐Management

Access to the Indian Registry System: Health Assessment and Surveillance Just Beginning … ! Working Group being put together and will include:

Treaty representatives; Alberta First Nations Information Governance Centre; Alberta Health; Health Canada; Aboriginal Affairs and Northern Development Canada

! We will work together to: apply for access to the Indian Registry System and develop an Alberta First Nations Data Governance Agreement

Purpose … ! Public Health Surveillance: Alberta Health; Alberta

Health Services; First Nations and Inuit Health Branch, Health Canada (collaborative work through co-‐management)

! Mandated by law to analyse, interpret, and disseminate health data and information for the purpose of public health action.

! NOT research!

Numbers can held in many ways … ! Setting priorities ! Health planning ! Disease investigations ! Evaluation of programs ! Raising funds ! Research

OCAP™ is about: RESPECT for First Nations self-‐determination in information management RESPECTING First Nation’s jurisdiction over information


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.


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 high level 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” “Dominion” -‐ man superior to all creation “Dominion” concept defines thinking

“Creator created man as equal” “Equal” -‐ man equal to all creation “Equal” concept defines thinking

Dominion Language and “written” system Church, education, government Hierarchical structure of practice

Equality Language and “oral” system Ceremonies, education, government Circle structure of practice

“Ownership” -‐ Authority Written documentation License, permits, and certificates

“Stewardship” – Authority Songs and oral documentation 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.


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 VALS Process Oral Process (existing) Circle Structures (tech) Develop Implementation practices (tech) for Operations, Management, Create Consensus

Stories of Creation, Napi, Kutuis and Bundle creations

Belief systems Stories of validation Songs and languages

Land People Water Animals Resources

Oral implementation laws Treaty song

Absolute Laws Natural Laws

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.


We must use our governance systems to secure ownership of that which defines who we are. We can use any of our societies to stamp ownership on our knowledge and information. We live within the boundaries of our territories, our environment, and our belief systems. When information is presented this is brought into the societies who sort the information, good from bad and present to the leadership who make the decisions. 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 through our management teams. Our management teams have the understanding of how to use inputs and outputs in ways that lead to decision making. We have to look at our cultural interpretations for our organizations.

The circle in our Tipi Floor Plan Model represents authorities which enable the sharing and use of information. We need facilitators who can operate a 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 of ethical practices. Our stories are our Elders; the core group can put the system together and culturally implement and interpret what we need to say. Validating information happens through our recorders. The process to validate information is through rounds and following steps of venue, language, action, and song. This makes ownership real.

We have a core group that represent our three Treaty areas and who can translate information to our Elders and our people.

Natural Law Absolute Law Theoretical Law Practice Laws Environment Territory Permeable Boundaries Creator

Stories Honour, Respect Truth, respect Value, Knowledge Bundle Creation Stories

Shared purpose Complex organization Knowledge centricity Multi-‐dimensional Bundle Creation Stories

Ethical Circle Space Facilitator Host Support Elder


Participants

Last Name First Name Organization Abraham Karen Frog Lake Beaver Mike Elder Bigstone Cree Nation Bird Anne Yellowhead Tribal Council Corrigan Nikki Treaty 6 Courtorielle Doris Elder, Swan River First Nation 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, Piikani Nation 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


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.


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.


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.


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