first nations and the jurisdictions ehealth convergence

8/16/2019 First Nations and the Jurisdictions EHealth Convergence

1/91


2/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

2

On behalf of COACH - Canada!s Health Informatics Association, the Assembly of First

Nations (AFN) and our supporting partners Canada Health Infoway (CHI) and HealthCanada!s First Nation and Inuit Health Branch (FNIHB), we are pleased to makeavailable this summary report of the First Nation!s and Jurisdictions! eHealthConvergence Forum held in Vancouver on June 20th 2012.

The overall poor health status of First Nations is well known; one of the majorchallenges is access to care as many First Nations communities are in remote andisolated areas of the country. It is universally recognized that eHealth has a central rolein enabling improvement within the health care system in the areas of patient safety,access to care, quality and improved productivity. Through the support of Infoway, thefederal, provincial and territorial governments are investing in eHealth infra and infostructures. First Nations are also accelerating investment in eHealth. In order tooptimize the investments and outcomes, it is critical that eHealth activities within the

jurisdictions and First Nations are aligned.

This forum provided a unique opportunity to bring together jurisdictional (provincial,territorial and federal) eHealth program leaders and First Nations representatives tolearn from each other and discuss, debate and come to consensus on the issues andapproaches required to leverage current and future eHealth investments to support anintegrated, interoperable eHealth system within Canada that will benefit First Nationspeople and communities.

This report will be distributed to the participants and other stakeholders; it is expectedthat the forum and the report will form the basis of improved understanding and a call toaction across the country.


3/91


4/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

4

1. Executive Summary

1.1. Background

Canada!s Federal Government (FG), Canada Health Infoway (CHI), and the jurisdictions(provinces and territories) have provided significant investment into eHealthinfrastructure. Concurrently Health Canada, through its First Nations and Inuit HealthBranch (FNIHB), has been investing in eHealth service provision through telehealth,First Nations capacity building, and more recently in information infrastructure(infostructure) through the implementation of electronic health records (EHRs) in FirstNations communities. In addition, many First Nations themselves have become activelyengaged in developing eHealth capacities within their communities.

While great strides have been made generally in information infostructure and in a fewFirst Nations contexts, the EHR and other eHealth capabilities for First Nations havetaken a back seat in many provincial/territorial and federal government initiatives. Inmost jurisdictions, investments in infrastructure, applications and capacity developmenthave not been sufficient to enable the type of electronic data exchange required tosupport health care service delivery to First Nations. Meanwhile provinces and

jurisdictions continue to develop eHealth infostructure to support existing services fornon-First Nations citizens.

The gap between health status and health services available to First Nations versusnon-First Nations is already very wide. If eHealth initiatives advance at the current pacewithin the provincial/territorial systems without serious consideration for First Nationscommunities the gap is likely to grow even wider.

The urgency to align jurisdictional eHealth initiatives with First Nations initiatives can beillustrated with the following telling statistics:

• Compared to the general Canadian population, First Nations adults have ahigher frequency of arthritis/rheumatism, high blood pressure, diabetes,asthma, heart disease, cataracts, chronic bronchitis, and cancer.1

• The prevalence of diabetes among First Nations adults is nearly four times asgreat as the general Canadian population (400%).

• Nearly one in five First Nations adults had no doctor or nurse available in theirarea (18.5%).

In the words of Richard Jock – Chief Executive Officer of the Assembly of First Nations:

1 FNIGC, “Quick Facts,” .


5/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

5

“Reciting these troubling statistics is not meant to stigmatize First Nations people;rather, they should be understood as a call to action. Given these stark realities coupledwith the proliferation of technology, inaction is no longer acceptable. First Nationspeople deserve the same access to quality comprehensive health care as all other

Canadians. Technology offers a remarkable opportunity to make serious improvementsin the health of First Nations people in Canada. This forum is an important first step increating a national conversation and building towards a collective vision of collaborationbetween First Nations and jurisdictions on an aligned eHealth agenda.“

It is well understood that Canada!s First Nations bear a greater burden of disease andpoorer health status overall2, largely as a result of complex and interrelated economic,political and social facts rooted in colonialism. Poorer health generally means morefrequent interactions with health systems and therefore increased costs to bothprovincial and federal systems. In addition, for many First Nations communities acrossCanada, federal government-funded health programs are limited largely to primary care.To receive health services beyond those available on-reserve First Nations have toleave their communities to access provincial/territorial health systems. Beyond thehealth system itself, unhealthy people (First Nations or otherwise) are costly toprovincial systems in other ways beyond the health service delivery. For example, thosewith addictions or mental health issues are more likely to find themselves withinprovincial justice systems. Similarly, with unhealthy parents, children suffering fromeither physical or mental health issues may require support from provincial child welfareservices incurring significant costs to provinces/territories. These examples point to theneed for increased attention and planning focused on the social determinants of health.3 Simply, eHealth is not going to be able to address every factor that produces poor

health outcomes in First Nations communities; however, eHealth technologies can bevery powerful tools in enabling more broad-based transformations within communities.

Beyond the projected cost savings associated with improving the health of First Nationspeople as a result of improved availability and quality of health services, the deploymentof eHealth technology holds great potential for the development of evidenced-basedpolicy at all levels. The data resulting from the implementation of electronic healthrecord systems (EHRS) will allow First Nations and their partners to measure theimpacts of health care services and programs and to develop programs and communityhealth plans based on accurate demographic and utilization statistics. Given thehistorical challenges associated with collecting First Nations medical data, the

opportunity that eHealth deployments present in terms of evidence-based policy makingis profound.

" #$%&'( )%*%+% ,"-.-/ 0 1'%'23'24%& 56782&$ 7* '($ #$%&'( 78 9263' :%'27*3 2* )%*%+%; 044$33$+

0EDE3' H-> "-."B H 976 I76$ 2*876I%'27* 7* '($ 3742%& +$'$6I2*%*'3 78 ($%&'(> @&$%3$ 3$$ '($ 09:J3 @%@$6; K$88$6L MB N$%+2*D>

0*+6$A OI$'24 %*+ Q9263' :%'27*3 =(7&232'24 57&24L %*+ 5&%**2*D R7+$&; S234E3327* 5%@$6 876 '($

=76&+ #$%&'( T6D%*2U%'27* )7II23327* 7* '($ 1742%& S$'$6I2*%*'3 78 #$%&'(>V ,0@62& "--W/B


6/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

6

On June 20, 2012, a forum was held in Vancouver, B.C. to begin and accelerate the journey towards eHealth alignment, convergence and clinical data integration for FirstNations. The forum participants included eHealth leaders from FNIHB, provincial andterritorial jurisdictions, First Nations, CHI and COACH – Canada!s Health Informatics

Association. It was recognized that a number of jurisdictions are well down the pathwhile others are just beginning to think about it. The forum provided an opportunity forlearning, discussion, debate and consensus building. Discussion addressed:

A. Senior Leadership and GovernanceB. PolicyC. SustainabilityD. Privacy and ConsentE. Data Flow

1.2.

Key Insights

The following Key Insights were gained from the discussions at the ConvergenceForum:

1. eHealth has the ability to significantly improve access to health care for First

Nations in remote and isolated communities. Lack of access to health services

contributes to the First Nations having the lowest health status and poorest

health outcomes of all Canadians.

2. Although the federal government has the constitutional responsibility for on-

reserve First Nations health care either through direct service provision or

funding jurisdictional service delivery, increasingly First Nations are assuming

some level of authority over their own health care systems, particularly on-

reserve.

3. There is a need for further discussions clarifying and articulating accountability

and responsibility for leading and/or implementing of health information systems

on-reserve. This discussion must include all levels of government, COACH, CHI,

and First Nations. For example, as First Nations governance structures vary

across Canada, the jurisdictions need to know the appropriate First Nations

organizations to deal with related to eHealth.4. Federal, provincial and territorial governments continue to invest significantly in

eHealth systems. However there has been little coordination between

governments and projects to ensure that systems are interoperable and able to

share data.

5. Systems that cannot interoperate are not sustainable. All stakeholders, federal,

provincial and territorial, must leverage existing investments and coordinate

future investments through joint planning.


7/91


8/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

8

1.3. Recommendations

The following Recommendations emerged from forum discussions with regard to eachof the areas of discussion.

A. Governance and Leadership Governance and Leadership refers to senior leadership involvement and commitment atall stages of eHealth development from conception to operations.

1. Each province or territory must work with its own First Nations governing

bodies/assemblies to understand their needs and priorities with respect to eHealth.

From this, a joint strategy should be developed, validated and communicated. This

strategy should be fully integrated into the provincial/territorial eHealth strategy.

2. As eHealth decision-making bodies are determining roles and accountabilities, they

should do so from the perspective of how to best serve citizens and patients. Inaddition, defining roles and accountabilities should include consideration of how to

maximize collaboration, consultation, communication and coordination on a go-

forward basis.

3. In each province or territory, the First Nations governing body/assembly should

engage with the jurisdictional eHealth authority to begin the process of defining a

strategy to integrate First Nations into the provincial/territorial eHealth strategy. As

part of this process consideration should be given to ways to increase the level of

eHealth expertise among First Nations community members. Developing this

expertise will facilitate the success of ensuing eHealth initiatives and also providecareer enhancement opportunities for community members.

4. The CHI CIO Forum should consider having the First Nations eHealth agenda

becoming a standing item at its meetings.

B. PolicyPolicy refers to the establishment of appropriate and supporting legislation, regulations,polices, standards and guidelines.

1. This report should be provided to the jurisdictional CIOs and First NationsLeadership.

2. The First Nations and Inuit Health Branch (FNIHB) and the Assembly of First Nations

(AFN) should be more proactive in interacting with the jurisdictional eHealth

leadership.

3. The jurisdictions, FNIHB and First Nations should work together to identify and

change existing policies that inhibit he integration and appropriate access to First

Nations health data and make the necessary changes to improve access.


9/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

9

4. The jurisdictions should prioritize the resolution of privacy impediments (legal and

policy) to enable access and sharing of eHealth data.

"# COACH and the AFN should consider engaging a working group to further explore

the intent / implications of OCAP™ in the context of existing privacy legislation.

Privacy guidelines should be developed that meet the needs of both First Nationsand the jurisdictions.

C. SustainabilitySustainability refers to the establishment and availability of funds for on-goingoperations, evaluation, and human resource capacity.

1. First Nations must be involved in any discussion about the provision of services to

their communities from planning to implementation.

2. First Nations should be more involved in jurisdictional eHealth governance, planning,solution selection, solution implementation, capacity building and operations. First

Nations involvement in solution selection and implementation is especially important

for First Nations community-based applications.

3. FNIHB and the AFN should consider working with Canada Health Infoway (CHI) and

the CIO Forum to develop a First Nations eHealth benefits evaluation framework.

FNIHB and the AFN could leverage the experience and tools developed by CHI in

their benefits evaluations for eHealth investments such as Drug, Diagnostic Imaging

and Telehealth.

4. COACH and the AFN should consider collaborating on eHealth competency profilesand educational opportunities.

5. FNIHB and First Nations should leverage activity and solutions where the

province/territory is leading the overall integration of the three jurisdictional areas.

D. Privacy and Consent

Privacy and Consent refers to the establishment and alignment of jurisdictional, federaland First Nations privacy legislation and data management protocols.

1. First Nations need to clarify what it means by “protect First Nations personal healthinformation” and how the concept differs from protecting personal health information

in the general population.

2. First Nations should consider and articulate the implications of OCAPTM as applied to

direct patient care as Privacy Legislation in most jurisdictions does not contemplate

"community ownership and control!


10/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

10

3. The jurisdictions and First Nations need more dialogue to better understand the

implications of OCAPTM and eHealth requirements in regard to data access and

sharing.

E. Data Flow Data flow refers to solutions permitting point of care access to personal health data aswell as appropriate secondary use for health surveillance, planning and evaluation.

1. First Nations should be more directly involved in jurisdictional eHealth planning,

governance and operations.

2. The Jurisdictions and First Nations need to come to a common understanding of

OCAPTM, what is legally permissible within OCAPTM, and develop a consensus on its

implementation. In light of COACH!s role in publishing established and legally

accepted national privacy and security guidelines, COACH and the AFN should

consider leading this discussion / initiative together.

3. Greater dialogue must to take place between First Nations and the jurisdictions to

ensure that First Nations! requirements and jurisdictions! capacities to satisfy these

are well understood.

4. More discussion is needed between the FNIHB, First Nations and the jurisdictions to

ensure a clear understanding of desired health information management strategies.

5. Increased input from health care providers delivering services in and to First Nations

communities in determining needs and priorities for point of care access.


11/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

11

2.

Forum Full Report

2.1. Background

Significant investments in eHealth info / infra-structure4 have been made by the federalgovernment (FG), Canada Health Infoway (CHI), and the jurisdictions (provinces andterritories). Concurrently, Health Canada through its First Nations and Inuit HealthBranch (FNIHB) has been investing in eHealth service provision through telehealth, FirstNations capacity building and more recently in infostructure through the implementationof electronic records in First Nations Communities. In addition, many First Nationsthemselves have become actively engaged in developing eHealth capacities within their

communities.

While important strides have been made generally, the electronic health record andother eHealth capabilities for First Nations have taken a back seat in manyprovincial/territorial and federal government initiatives. In most jurisdictions,investments in infrastructure, applications and capacity development have not beenmade at a level that would allow for the electronic data exchange required to supporthealth care service delivery to First Nations. The gap between health status andservices in First Nations versus non-First Nations is already too wide. If eHealthinitiatives continue at the current pace within the provincial/territorial systems withoutserious consideration for First Nations communities, there is a serious risk for wideningthe gap even more.

It is well understood that Canada!s First Nations bear a greater burden of disease andpoorer health status overall5, largely as a result of complex and interrelated economic,political and social facts rooted in colonialism. Poorer health generally means morefrequent interactions with health systems and therefore increased costs to bothprovincial and federal systems. In addition, for many First Nations communities acrossCanada, federal government-funded health programs are limited largely to primary care.To receive health services beyond those available on-reserve First Nations have toleave their communities to access provincial/territorial health systems. Beyond the

health system itself, unhealthy people (First Nations or otherwise) are costly toprovincial systems in other ways beyond the health service delivery. For example, thosewith addictions or mental health issues are more likely to find themselves within

X Y*873'6E4'E6$ 6$8$63 '7 +%'% %*+ '($ @7&242$3 %*+ @674$33$3 876 2'3 3'76%D$ %*+ E3$> A(2&$ QY*86%3'6E4'E6$V

6$8$63 '7 '($ 23 '($ @(L324%& (%6+A%6$ %*+ 378'A%6$ E3$+ '7 2*'$647**$4' 47I@E'$63 %*+ E3$63Z #$%&'( )%*%+% ,"-.-/ 0 1'%'23'24%& 56782&$ 7* '($ #$%&'( 78 9263' :%'27*3 2* )%*%+%;

044$33$+ 0EDE3' H-> "-."


12/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

12

provincial justice systems. Similarly, unhealthy parents, suffering from either physical ormental health issues, may require support from provincial child welfare servicesincurring significant costs to provinces/territories. These examples point to the need forincreased attention and planning focused on the social determinants of health.6 Simply,eHealth is not going to be able to address every factor that produces poor health

outcomes in First Nations communities; however, eHealth technologies can be verypowerful tools in enabling more broad-based transformations within communities.

Beyond the savings that healthy First Nations people will bring to the provinces andterritories across the spectrum of services, the deployment of eHealth technology holdsgreat possibilities in terms of the development of evidenced-based policy at all levels.The data resulting from the implementation of an Electronic Health Record System(EHRS) will allow First Nations and their partners to measure the impacts of health careservices and programs and develop programs and community health plans based onaccurate demographics and utilization statistics. Keep in mind that medical data of FirstNations, for a number of reasons, has historically been particularly challenging to get ahandle on. The opportunity that eHealth deployments present in terms of evidence-based policy making is profound.

There has not, in general, been a focus on aligning jurisdictional eHealth initiatives andFirst Nations to now. Why the urgency now? Here are just a few telling statistics:

• Compared to the general Canadian population, First Nations adults have ahigher frequency of arthritis/rheumatism, high blood pressure, diabetes,asthma, heart disease, cataracts, chronic bronchitis, and cancer.7

• The prevalence of diabetes among First Nations adults is nearly four times as

great as the general Canadian population (400%).• Nearly one in five First Nations adults had no doctor or nurse available in their

area (18.5%).

In the words of Richard Jock – Chief Executive Officer at the Assembly of First Nations:

“Reciting these troubling statistics is not meant to stigmatize First Nations people;rather, they should be understood as a call to action. Given these stark realities coupledwith the proliferation of technology, inaction is no longer acceptable. First Nationspeople deserve the same access to quality comprehensive health care as all otherCanadians. Technology offers a remarkable opportunity to make serious improvements

in the health of First Nations people in Canada. I hope that we can agree that thisForum is a first step in creating a national conversation and building towards a collectivevision of collaboration between First Nations and jurisdictions on an aligned eHealthagenda”.

[ 976 I76$ 2*876I%'27* 7* '($ 3742%& +$'$6I2*%*'3 78 ($%&'(> @&$%3$ 3$$ '($ 09:J3 @%@$6; K$88$6L MB N$%+2*D>

0*+6$A OI$'24 %*+ Q9263' :%'27*3 =(7&232'24 57&24L %*+ 5&%**2*D R7+$&; S234E3327* 5%@$6 876 '($

=76&+ #$%&'( T6D%*2U%'27* )7II23327* 7* '($ 1742%& S$'$6I2*%*'3 78 #$%&'(>V ,0@62& "--W/BW 9:YP)> Q\E24] 9%4'3>V ^(''@;??AAAB6(3C$63B4%?8%4'3_B


13/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

13

2.2. Forum Participants

The forum held in Vancouver, B.C. on June 20, 2012 had participation from eHealthleaders representing Health Canada – First Nations and Inuit Health Branch (FNIHB),

the Provinces and Territories, First Nations (as represented by the Assembly of FirstNations, the interim First Nations Health Authority (BC) and the Assembly of ManitobaChiefs), CHI and COACH – Canada!s Health Informatics Associations to begin thediscussion of eHealth alignment, convergence and clinical data integration. It wasrecognized that a number of Jurisdictions are well down the path while others are justbeginning to think about it. The forum provided an opportunity for learning, discussion,debate and consensus building.

2.3.

Objectives of the Forum

The forum was a unique in that it brought together senior representatives with eHealthresponsibility (policy, implementation and operations) from the jurisdictions (provincesand territories), the AFN, the Assembly of Manitoba Chiefs (AMC), the interim FirstNations Health Authority (iFNHA), FNIHB, CIHI and COACH with the objectives of:

1. Exploration and understanding of:a. A high level current state of provincial/territorial, federal and First Nations

eHealth initiatives across the country;b. The goals/vision of integrated and interoperable trilateral (Federal/

Provincial/Territorial/First Nations) eHealth from the participants perspectives;c. Partnership opportunities;

d. Effective approaches; ande. Impacts if convergence is not achieved.

2. Increased awareness of:a. First Nations! eHealth requirements,b. Evolving legal and information governance for First Nations, andc. The work underway with First Nations for inclusion in the CHI Blueprint.

3. Initiate discussions aimed at providing clarity on roles and responsibilities withrespect to interoperable eHealth and clinical integration as it applies to the

jurisdictions including First Nations.

4. Begin to explore approaches to move the collective eHealth agenda forward.

5. Begin setting the groundwork required for regional collaboration.

6. Document the next steps.


14/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

14

2.4. Setting the Context for Understanding and Dialogue

Canada Health Infoway - National Directions for Innovation andTransformation

In 2012, CHI conducted a series of consultations across the country to develop and gainconsensus on national directions for innovation and transformation within the Canadianhealth care system. The resulting directions are:

1. Bring Care Closer to Home

o Mobile, home and community

2. Enhance the Patient Experience

o Convenience, reduced wait-times, interaction, navigation

3. Support New Models of Careo Electronic medical and health records, point of care, person centered, continuity

of care especially for chronic disease management

4. Improve Patient Safety

o Provider order entry, electronic prescribing, replace aging systems, best

practices

5. Enable a High – Performing Health System

o Accelerate deployment of analytics, creation of evidence for decision making

(clinical / administrative), lean and high performing system

In order to further set the context for discussion and provide the participants with a highlevel understanding of the current state, a number of presentations were made that aresummarized below; the full presentation slides can be found in the Section 3 -Appendices.


15/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

15

First Nations eHealth Strategic Policy Directions

Presenter: Valerie Gideon - ADM Regional Operations, First Nations and Inuit Health

Branch (FNIHB), Health Canada (HC)

Health Canada has responsibility for providing or funding health services to a number ofgroups, the largest being First Nations and Inuit peoples. The FNIHB has an annualbudget of over $2 billion, which is two thirds of the total Health Canada Budget. Itoperates 600 health care facilities (public health) and primary care in 85 remote andisolated communities in BC, MB, SK as well as QC.

The Branch!s Strategic Plan (2012) goals include: providing quality health services,collaborative planning and relationships and effective and efficient performance (High

quality data - health status, determinants of health, influence on utilization of healthservices - eHealth enabler).

Presenter: Ernie Dal Grande - National eHealth Program Manager FNIHB, HC

The eHealth journey began in 2002 and focused on building partnerships, jointgovernance and planning. As part of building the partnerships the FNIHB engaged FirstNations to explain eHealth, what it is and why it is important for improving the health andhealth services for First Nations. In addition to the education initiatives, work wasundertaken to build First Nations and FNIHB capacity with respect to new skills andknowledge necessary for the implementation of eHealth services.

Infrastructure implementation for the provision of eHealth services was also acceleratedincluding the addition of Telehealth services; today over 300 sites are operational.Working in partnership with other federal departments, broadband infrastructure wasintroduced to on reserve communities and health facilities. Panorama (Canada!s newPublic Health Surveillance System) deployment planning has been initiated with mostprovinces. Electronic Medical Records (EMR) have been implemented in somecommunities.

Interoperability and integration activities are well underway with FirstNations/Federal/Provinces. Some examples are:

• Clinical Telehealth (OTN, MB Telehealth)• Panorama deployment planning (BC, ON, SK, MB)• EHR Viewer (MB, BC)• EMR Deployment, with Regional Health Authorities and Local Health Integration

Network Systems (MB, NS, BC and ON)• Integrated trilateral (F/P/FN) eHealth governance and planning (BC)• Client Registry work (ON and NS)• Electronic data sharing agreements (AB, BC, NS)


16/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

16

To support eHealth planning implementation the FNIHB has undertaken a significantamount of policy work such as:

• The eHealth Infostructure Program has received Treasury Board authority forrenewal (2011)

• The Health Infostructure Strategic Action Plan (HISAP) has been updated andapproved (March 2012)

• The guidelines for the branch!s eHealth Infostructure Program were approved (2012)• First Nations have developed eHealth Strategies (Assembly of First Nations and

Regional/Trilateral Plans)• Phase 1, eHealth program evaluations have been completed, Phase 2 will be

completed by March 2013• The FNIHB long-term eHealth business case is under development and will be

completed in the fall of 2012 for distribution.

A number of these documents were provided to the participants following the forum and

are available through FNIHB, AFN and COACH.


17/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

17

Key Messages about First Nations Health Care

Presenter: Grand Chief Doug Kelly – British Columbia (BC) First Nations HealthCouncil

Transformative change starts with culturally appropriate First Nations engagement.What this requires is leaders (federal/provincial/First Nations) to first listen, then learn,and only then act. For far too long, federal and provincial policy makers and leadershave acted first, before listening and learning, only to be forced to deal with theconsequences later.

An example where mutual respect, relationship building and careful negotiation

preceded policy change was the process leading up to the historic BC TrilateralAgreement (HC/BC/FN), signed in October of 2011. The agreement deals withadministrative arrangement and requires that First Nations be at the table whereverdecisions are made about First Nations.

First Nations must leverage provincial policies and services. An important First Nationsgoal is to: influence policies, programs and services. This includes: evaluating healthpolicies, programs and services, and having a voice to revise policies programs andservices to meet our needs. We do not want to create a parallel service delivery system.

eHealth offers the potential to improve access to services for remote citizens – there is

much excitement for First Nations. As an example, in the Carrier Sekani, Dr. JohnPawlovich, an Abbotsford physician, uses eHealth technology to "virtually! visit hispatients in and around Prince George. He first developed trust, and now is able tomanage ongoing interaction with his patients electronically. Policies must change sophysicians can be creative in how they interact with patients and reduce cost.

We manage change; change doesn't manage us. We must create a system in BC thatcommunicates across the jurisdictions. Communication and engagement are keyelements; we must look at processes, engagement, and validation. This communicationand engagement must continually revisit the principle of first listening, learning andonly then acting.


18/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

18

The First Nations eHealth Strategy Framework

Presenter: Jonathan Thompson - Director of the Health & Social Secretariat,Assembly of First Nations (AFN)

The Assembly of First Nations is a national organization that represents about 1 millionFirst Nations Canadians in about 633 First Nations Communities (rural and urban). Theprimary goal of the AFN is advocacy for First Nations.

Within the AFN, an eHealth Advisory Committee has established a number of priorities,they include:

• Relationship building with eHealth players in Canada• Development of a data sharing agreement template for use by First Nations• Development and implementation of an eHealth Strategy Framework that would

include reference documents much like the foundational elements in EHRs blueprintincluding:

o Goals/objectiveso Governance structure and processeso Appropriate organizational infrastructureo Standards based architecture - interoperability with provincial & territorial

infrastructure and applicationso Technology infrastructureo Privacy, OCAP TM and information securityo Data stewardship

o Aggregated data, analyticso Initial and ongoing funding/investment.

The ability to have control over their personal health information is critical to FirstNations people. OCAP TM (ownership, control, access and possession) has beendeveloped to articulate the essential elements. It should be noted that OCAP TM appliesto all personal data, not just health data.

o Ownership = collective ownership of information o Control = First Nations, communities and representatives have right in seeking

control and information management which will affect themo

Access = First Nations must have access to data about themselves andcommunities regardless of where held. Collective accesso Possession = capacity to manage own information


19/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

19

eHealth Partnerships in Manitoba

Presenters: Liz Loewen - Director Coordination of Care Manitoba eHealth and DarrickBaxter eHealth Technology Coordinator - Assembly of Manitoba Chiefs

Manitoba has taken a partnership approach with the objective to protect and strengthentreaty and inherent rights and to improve socioeconomic conditions of First Nationspeople and communities. Working together was not mandated; it evolved fromrespectful relationship building. There are numerous examples of where we havesuccessfully partnered that include:

• Telehealth

• First Nations, Federal and Provincial representation

• Leadership and problem solving through monthly meetings

• Connectivity challenges

• Skill and comfort in communities• Effective decision-making

• Transparency

• Awareness, better understanding of eHealth applications

• Meaningful First Nations consultation

Through the partnership approach, there are a number of action areas that are focusedon moving the First Nations eHealth goals and objectives forward over next 10 yearsthey include:

• Operational collaboration

• Working relationships around specific solutions (Telehealth, Panorama and eChart)

• Commitment for collaborative consultative decision making with local community

leadership

BC Tripartite / Trilateral eHealth- A Unique System-Wide Collaborative

Opportunity

Presenter: Joseph Mendez – CIO BC Interim First Nations Health Authority

British Columbia has taken a more structured and formal approach with roles andresponsibilities being clearly articulated in a formal trilateral (HC/FN/ BC) agreementthat is the only one in Canada today. This unique agreement provides for First Nationsownership of their health care and enables First Nations influence on programs andservices. In addition the agreement supports the establishment of a First Nations HealthAuthority (FNHA) that has provincial scope. The FNHA will help ensure a commonapproach to province-wide initiatives and strategies that affect First Nations. It will alsolead on the development of models and solutions that not only meet First Nations ! needs, but also are so attractive that First Nations want to join.


20/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

20

Most First Nations receive tertiary and specialized care in the major provincial centers.Key to moving the First Nations eHealth agenda forward is the issue of connectivity sothat data can be shared between local and other health care providers. BC already hasa secure private health network supporting the Regional Health Authorities; First

Nations need access to this network (eNG) and to data held by the FNIHB.

The following traditional issues provide significant opportunities for change:

• Privacy - protection rather than access

• 21st century services supported by 19th century practices and policies, needs

updating

• Paternalistic, not patient centric

• Lack of understanding and prioritization of key issues with appropriate

attention/solutions

Moving forward:

• Senior leadership needs a collaborative mindset

• Increasing innovation - knowledge transfer and capacity development


21/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

21

2.5. Areas of Challenge and Opportunity – Breakout Groups

In preparation for this forum Health Canada and the AFN worked to develop a numberof Common Understandings of the Opportunities/Challenges discussion points to

stimulate discussion amongst breakout groups. It is fully acknowledged and expectedthat other aspects of each area that are of interest or importance to a jurisdiction willexist and should be added to the discussion points.

The discussion points were grouped according to the following areas of investigation:

1. Senior Leadership and Governance

2. Policy

3. Sustainability

4. Privacy and consent

5.

Data flow

Each breakout group was asked to review the proposed Opportunity/ChallengeStatements for each area of investigation, and through discussion identify points thatthey either agree on, need to be modified to reach agreement, or don!t agree on.Additional points were added to make the section more complete.

1. Senior Leadership and Governance

`($ 87&&7A2*D '%F&$ 7E'&2*$3 +234E3327*3 %*+ 6$47II$*+%'27*3 A2'( 6$8$6$*4$ '7

T@@76'E*2'L?)(%&&$*D$ 1'%'$I$*'3 A2'( 6$3@$4' '7 $88$4'2a$ 1$*276 M$%+$63(2@ %*+ P7a$6*%*4$B

$#$ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Respect and understand each jurisdiction ! s eHealth approach and strategy (FirstNations/federal/provincial/territorial), and maximize each other ! s investments andexpertise for integrated planning and operations for sustained change at the FirstNations community level.

1EII%6L 78 P67E@ S234E3327*;

The group agreed with the opportunity/challenge statement. It was felt strongly that, inan environment of constrained funding and capacity, there is no reason to beduplicating investments. Existing investments should be leveraged as much aspossible, not only in the health care system but across the spectrum of governmentprograms (e.g. education, infrastructure, etc.).


22/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

22

While change is sometimes achieved First at the individual community level, the groupdid not advocate promoting community level approaches to eHealth. While it isimportant to respect the jurisdiction of individual First Nations, there is not enoughfunding or capacity to create band-by-band approaches or negotiations for each of the

633 First Nations communities. The group felt that one of the reasons the BC TripartiteAgreement was achieved was because BC First Nations came together as a collective.Where any First Nations communities are uncertain as to the value of this approach,best practices elsewhere can have a positive impact. For example, the ManitobaMustimuhw First Nations EMR project was adapted from a Cowichan (BC) FirstNations solution. In Manitoba, the same Telehealth model (integrated, equipment,scheduling, support) is used for all new First Nation sites.

The group felt optimistic that attitudes are changing sufficiently to allow progresstowards a coordinated approach. It was pointed out that breakthroughs such as theBC tripartite agreement would not have been possible even a few years ago.

P67E@J3 N$47II$*+%'27*;

Each province or territory to work with its own First Nations governing body/assemblyto understand their needs and priorities with respect to eHealth. From this, a jointstrategy should be developed, validated and communicated. This strategy should befully integrated into the provincial/territorial eHealth strategy.

$#@ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Leverage activity and solutions where the province/territory is leading the overall

integration of the three jurisdictional areas.

1EII%6L 78 P67E@ S234E3327*;

The Group agreed with this statement and felt this was the most logical approach.

P67E@J3 N$47II$*+%'27*;

Adopt this approach.


23/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

23

.BH T@@76'E*2'L ? )(%&&$*D$ 1'%'$I$*' ,09:?9:Y#b/;

All parties should work to determine roles and accountabilities at the regional eHealthdecision-making and governance tables.

1EII%6L 78 P67E@ S234E3327*;

The Group agreed with this statement. It felt that some roles would be determined bythe broader health care system, not by eHealth programs (e.g. physicians! accountabilities to their licensing bodies). EHealth programs may be able to advise but

some accountabilities are entrenched elsewhere.

The Group also noted that the health care system in general must to move from aprovider-centred to a patient-centred approach; the system should be about the peopleit serves.

Furthermore, the Group felt that focusing strictly on roles and accountabilities wouldcreate or reinforce boundaries, which risks perpetuating the “silo effect” commonlyfound in today!s health care system. Instead, the discussion should also focus onrelationships going forward, emphasizing collaboration, consultation, communication,coordination, etc.

P67E@J3 N$47II$*+%'27*;

As eHealth decision-making bodies are determining roles and accountabilities, theyshould do so from the perspective of how to best serve the patient. In addition,defining roles and accountabilities should include consideration of how to maximizecollaboration, consultation, communication, coordination, etc., on a go-forward basis.


24/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

24

$#A %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

There is a need to work together to change from the existing project approach to anintegrated strategic approach with a regional First Nations eHealth Roadmap(supported by FNIHB) that is separate but fully aligns within the provincial/territorial

strategy, where practical.

1EII%6L 78 P67E@ S234E3327*;

The Group disagreed with this statement. It felt that, due to their small population size,

First Nations have very limited influence on provincial/territorial health care systems.First Nations don!t want their health care needs to be overlooked but a First NationseHealth roadmap done outside of a provincial/territorial eHealth strategy will fosterinequity in the system. Provincial/territorial leadership is key; FNIHB!s role should beprimarily that of a funder. Typically, the patient is not concerned with who is providingor paying for their health care services, only that the services are there when needed.In any event, anything beyond primary care already happens in the provincial/territorialsystem, and that proportion will increase as the population ages.

First Nations and FNIHB weren!t invited to participate in the creation ofprovincial/territorial eHealth strategies, so they did some of their own projects ratherthan make no progress on eHealth. The Group!s consensus was that there was still anopportunity for First Nations and FNIHB to engage with provinces and territories oneHealth strategies. In fact, this could be exactly the right time; now that the majorcomponents of the various provincial and territorial eHealth programs are in place,these jurisdictions may have the capacity to begin addressing First Nations! eHealthneeds more strategically.

P67E@J3 N$47II$*+%'27*;

In each province or territory, the First Nations governing body/assembly should engagewith the jurisdictional eHealth authority to begin the process of defining a strategy tointegrate First Nations into the provincial/territorial eHealth strategy.


25/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

25

$#" %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Regional First Nations eHealth expertise exists in all regions. Senior National,

Regional and Community First Nations leadership are leading and engaged in manycases and view eHealth as an enabler to improving health care delivery and access inthe communities.

1EII%6L 78 P67E@ S234E3327*;

The Group felt that there was insufficient data to conclude on the accuracy of this

statement. Group members believe that First Nations eHealth expertise is not uniformacross the country; there is considerable expertise in domains like Telehealth, butmuch less in other domains.

Insufficient eHealth expertise and capacity is an issue for First Nations as it is for therest of Canada. At the same time, having First Nations expertise is crucial to gainingthe community members! trust in order to succeed. In addition, since eHealth expertiseis in short supply in Canada, gaining this knowledge and experience could representcareer development opportunities for First Nations members.

P67E@J3 N$47II$*+%'27*;

The Group has previously recommended the joint definition of a strategy to integrateFirst Nations! eHealth needs into each provincial/territorial eHealth strategy. As part ofthat process, consideration should be given to ways to increase the level of eHealthexpertise among First Nations community members. Developing this expertise willfacilitate the success of ensuing eHealth initiatives and also provide careerenhancement opportunities for community members.


26/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

26

.B[ T@@76'E*2'L ? )(%&&$*D$ 1'%'$I$*' ,09:?9:Y#b/;

The FNIHB is committed, by its Health Infostructure Strategic Action Plan (HISAP) andits existing eHealth Program, to support First Nations communities within a broaderprovincial/territorial strategy.

1EII%6L 78 P67E@ S234E3327*;

The Group agreed with this statement.

P67E@J3 N$47II$*+%'27*;

None.


27/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

27

$#B %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

All three jurisdictions could agree to work together to create a national governanceforum that is linked to regional governance in order to share and understand eachother ! s eHealth plans and look for linkages and partnership opportunities in project

deployment funding, expertise, and sustainability. An example of this is the BC FirstNations eHealth tripartite process as part of the new First Nations Health Authority orthe Saskatchewan MOU on eHealth with the Northern Inter-tribal Health Authority.First Nations community and regional leadership must be part of eHealth decision- making that impact their communities and seize collaboration opportunities as they arepresented.

1EII%6L 78 P67E@ S234E3327*;

The Group felt that a governance forum may not be practical and suggested that aknowledge-sharing forum should be considered instead. In addition, rather thancreating a new forum, the Group felt it would be more effective to add the First Nationsperspective into existing forums. For example, the First Nations eHealth agenda couldbe a standing item at the CIO Forum. The Group felt the FNIHB should better engagedwith the Government of Canada representatives on all of the existing forums.

P67E@J3 N$47II$*+%'27*;

The CHI CIO Forum should consider having the First Nations eHealth agendabecoming a standing item at its meetings.


28/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

28

2.

Policy

The following table outlines discussions and recommendations for effective Policyestablishment:

@#$ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

After ten years of community and regional eHealth investments, FNIHB, working withFirst Nations and the provinces/territories, continues to acknowledge that eHealth has

a central role to play in enabling improvements with the business issues of patientsafety, access to care, quality of care and improved productivity. Similarly, FirstNations themselves have/are also accelerating investments in eHealth with a markedincrease in adoption of eHealth tools over the past five years.

1EII%6L 78 P67E@ S234E3327*;

The group challenged the notion that there has been a “marked increase in theadoption…”; perhaps this is because most were unaware that First Nations and FNIHBwere undertaking this kind of work. As well, there are marked differences both withinand between jurisdictions related to progress in terms of the adoption of eHealth tools.

P67E@J3 N$47II$*+%'27*;

That this report be provided to the jurisdictional CIOs and First Nations Leadership,and that FNIHB and the AFN be more proactive in interacting with the jurisdictionaleHealth leadership.


29/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

29

@#@ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

It is recognized by both FNIHB and many First Nations that, in order to optimize theinvestments and outcomes, it is critical that eHealth activities within the jurisdictionsand First Nations communities be aligned, interoperable and clinically integrated where

possible and practical. With integration/alignment as the desired end-state, HealthCanada-FNIHB, Provinces/Territories and First Nations could all benefit fromtrilateral/tripartite eHealth partnerships.

1EII%6L 78 P67E@ S234E3327*;

The group questioned whether the trilateral agreement taken by BC was the best wayto proceed, as people on the ground understand this as a political approach vs. truegovernance. Some suggested the Manitoba approach of forming solid partnershipsmight, on a practical level, be more a more productive approach.

It would also be useful to identify policies that are in the way of greaterintegration/alignment. For example, amending policies to allow Health Canada nursesor Health Managers within First Nations access to the provincial eHealth system inorder to input or retrieve patient data? Non-provincial health clinics / pharmacies adddata all the time.

In either approach there must be clear intentions and consistent expectations as wellas mechanisms to hold parties to account.

P67E@J3 N$47II$*+%'27*;

That the jurisdictions, FNIHB and First Nations work together to identify existing

policies that inhibit the integration and appropriate access to First Nations health dataand make the necessary changes to improve access.


30/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

30

@#C %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

There are a number of examples where joint eHealth activities have proven that jurisdictional issues can be addressed when the focus is on thepatient/client/community. FNIHB and First Nations working together have learned that

key elements need to align for the successful implementation of First Nationscommunity eHealth services and tools. They include:

• Engaged leadership and clear governance support;• Building of trust relationships;• Communicating with each jurisdictional partner a shared commitment to a

common plan and goal;

• Culturally competent health service delivery people who understand the value

added and are trained to use the tools;• Health organization partnerships with a data sharing mind set;• Telecommunications/connectivity infrastructure;• Flexible technology at the point of service, more mobile in nature and the

technology support/expertise where needed;• Where applicable private sector, academia and NGO e.g. Disease Support

Organizations / Foundations involvement and expertise;

• Understanding of and adherence to OCAP (Ownership, Control, Access,

Possession) principles;• Sustainable funding and advanced business approaches to evolve new e-

services from a project setting to becoming the new way of doing business;• Being prepared to deal with political, technological, financial, organizational and

human challenges.”

1EII%6L 78 P67E@ S234E3327*;

There was general agreement on the list of key elements, however OCAP TM remains ahuge question mark for most jurisdictions. It is not just about the political will to adoptand implement it, it is whether jurisdictional legislation and regulation will allow for it. Inparticular the notion of community ownership of individual health data. Most

jurisdictions only recognize the individual (patient and/or provider).

P67E@J3 N$47II$*+%'27*;

That COACH and the AFN consider engaging a working group to more explore theintent / implications of OCAP TM in the context of existing privacy legislation anddevelop privacy guidelines that meet the needs of First Nations and the jurisdictions.


31/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

31

3.

Sustainability

The following table outlines discussions and recommendations for sustainable eHealth

development, implementation and on-going operations.

C#$ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

eHealth sustainability/funding and policy strategies need to be based on meeting the business and clinical needs of the three health systems providing services to peopleliving on-reserve . This would include moving away from a siloed or stove-piped

program and project approach to deploying ICTs/eHealth in a more integrated jurisdictional team approach for on-reserve eHealth solutions.

1EII%6L 78 P67E@ S234E3327*;

The group agreed in principle, but there is also a need to respect the existing initiativesand unique drivers in communities; it!s a delicate balance between systems that areflexible vs. those that are too rigid. It is important for the jurisdictions to understand theFirst Nations business / clinical requirements / care models so they can be designed

into the solutions. This starts with a meaningful dialogue, bringing First Nations to theplanning tables – shared listening, education – coming up with a model that issustainable, based on common understanding. It may however, not always be possibleto satisfy both business and clinical needs at the same time; these may be, at times,competing goals. First Nations also need to understand that is not practical or fiscallyfeasible to create individual solutions for each and every community; bands and groupsneed to come together, especially smaller communities to develop commonrequirements. Interoperability is this key to data flow from disparate systems.

Current health care delivery modes differ based on region/location/service availabilityas well, programs differ per community and the systems must ultimately meet service

delivery model.

There are not 3 health care systems; we shouldn!t perpetuate that language. Thereare 3 sets of jurisdictions providing (directly or through funding) some health careservices. Achieving an integrated jurisdictional approach is not as simple as justincluding the provinces, federal government and First Nations in the planning. There isan added complexity of other governance/delivery structures such as Regional HealthAuthorities and Local Health Integration Networks, as well as politicians (with politicalagendas) involved in making decisions.


32/91


33/91


34/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

34

C#C %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

There would be great benefit to have governments and health delivery organizations

work to update and align eHealth policy/regulations/laws, and IT policies to supportcommunity and regional First Nations health services delivery. Working together todesign the aligned macro-level government policies to support micro-level federal/provincial/territorial/FNs eHealth initiatives, this would go a long way to ensuringsustainability and increase adoption of eHealth solutions. This would include alignedpolicies for the use of standardized, interoperable, integrated solutions using datastandards, infrastructure standards, application standards and strictly defined access,

sharing and usage standards, where applicable.

1EII%6L 78 P67E@ S234E3327*;

The group felt the focus should be on information sharing agreements. Other thingsare solvable with education and engagement. Agreements must overtly cover andrespect policies of First Nations; it!s about building trust. Unfortunately with the pacerequired by our projects today doesn!t allow time to build the trust, the relationships; it!sdriven by short term funding mechanisms

Even with information sharing agreements there are potential issues – such as theYukon using the BC instance of Panorama – can BC legally collect information onbehalf of the Yukon and then provide it to them? BC law only contemplates data forBC residents. AB and NWT have taken a different approach and segregated the

jurisdictional data within the application to avoid the legal implications of a mixeddatabase. What implications does this have for First Nations within a jurisdiction?

P67E@J3 N$47II$*+%'27*;

Jurisdictions should make resolving the privacy impediments (legal and policy) toeHealth implementation of data access and sharing a higher priority.


35/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

35

C#A %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

The three jurisdictional partners could agree to work on a solid First Nations eHealth

evaluation framework that is able to measure future progress together, evaluate andshow evidence related to the benefits/outcomes around improved quality ofcare/patient safety, improved access and improved productivity.

1EII%6L 78 P67E@ S234E3327*;

The group agreed that this is a good idea as there needs to be a consistent way todemonstrate benefits and communicate/educate/market. There is value if we all workon his together, but the energy involved could be huge.

The challenge is that it!s hard to show short-term benefits, they are normally long term.Savings are not always realized – we can save money, but the money doesn !t comeback to the system and the benefits are realized elsewhere e.g. the patient doesn !thave to travel to receive care. The power of anecdotal stories can demonstrate thebenefits better than a cost benefit analysis.

There are also equity issues, if one group is saving more than another, should they bepaying more for the service? Governments always want to know how the savings canbe harvested.

P67E@J3 N$47II$*+%'27*;

That FNIHB and the AFN work with CHI and the CIO Forum to develop a benefitsevaluation framework. CHI has significant experience in developing / conductingbenefits evaluations for eHealth investments such as Drug, Diagnostic Imaging andTelehealth.


36/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

36

C#" %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

All three jurisdictions could collaborate on common business cases, funding proposals,where practical, that make their way up the various jurisdictional approval processes,Cabinet and Treasury Board processes, showing Federal/Provincial/Territorial

alignment and First Nations leadership support.

1EII%6L 78 P67E@ S234E3327*;

The group felt this was a good idea in principle but questioned whether it was practical

in the current political environment.

The group recognized that it could be done on a case-by-case basis, based on jurisdictional circumstances and readiness e.g. Panorama. This was successfulbecause Panorama had been described well enough and was consistent across thecountry. It would be more difficult to do for individual Provincial and Territorialprograms.

P67E@J3 N$47II$*+%'27*;

No recommendation.


37/91


38/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

38

C#B %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Governments should continue to work together in order to deal with community

broadband/sufficient bandwidth telecommunications to meet ever-growing businessdemands from the communities. No one Federal department or

provincial/territorial/First Nations jurisdiction has the resources to do it alone.Partnerships needed to achieve economies of scale (AANDC, FNIHB,Province/Territory, Private Sector).

1EII%6L 78 P67E@ S234E3327*;

The group disagreed with the statement as written. It doesn!t have to be this way. Forexample, AB took a different path from BC – AB uses an encrypted public internet, nota segregated secure network. Therefore, is a private network even needed and couldit be a cost avoidance opportunity?

The challenge is getting the bodies together; we need to aggregate demand if we areto influence industry.

Is this a public service (like health, education, justice, and government operations) or acommodity? This is really a political conversation e.g. fiber-optic build in NW Ontariocan!t get anchor investor, what is the return on investment?

P67E@J3 N$47II$*+%'27*;

None


39/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

39

C#E %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Work together, including COACH, on national/regional eHealth competency profilesand learning outcomes, to develop First Nations regional/community eHealth skills andcapacity required for the longer-term workforce, and fill the necessary jobs with First

Nations where possible.

1EII%6L 78 P67E@ S234E3327*;

The group agreed with the statement.

In addition to increasing chances of First Nations eHealth project success, it would alsobe a good opportunity for career development for First Nations community members.

P67E@J3 N$47II$*+%'27*;

COACH and the AFN consider collaborating on eHealth competency profiles andeducational opportunities.


40/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

40

4. Privacy and Consent

The following table outlines discussions and recommendations for aligned Privacy andConsent legislation and data management practices

A#$ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

The privacy issue is a top priority and must be addressed within a practical way toallow information to flow between the three parties. This issue is a large barrier to

moving forward with full-scale integrated eHealth jurisdictional deployment efforts.There is a need for any information flow to be in compliance with relevantprovincial/territorial/federal privacy legislation.

1EII%6L 78 P67E@ S234E3327*;

The group disagreed with the statement. There needs to be balance between privacyand access. It is very ambitious to look at harmonization – however, it will not likelysucceed because it will require everyone to concede something (previous attemptshave failed).

Suggested answer: give the data to the people (i.e. their own PHR with an access

code) – people will become the owners of their own personal health info, 1 person 1record. In addition to managing privacy, this will also foster culture change - people willtake more responsibility for their own health. It is recognized that not all individualswill want or be capable of being the holder of all their health data.

P67E@J3 N$47II$*+%'27*;

None


41/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

41

A#@ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Working in partnerships to provide a means to protect First Nations personal healthinformation across the full spectrum of the electronic service delivery, management

and administration would be an important step in building community confidence in andusing more ICTs to deliver and manage community health services.

1EII%6L 78 P67E@ S234E3327*;

The group was not sure. Building trust is definitely important but what meant by"protect!? It should be less about protection than about access. The group was notsure how First Nations would be different from existing provincial / territorial privacyprotection.

P67E@J3 N$47II$*+%'27*;

First Nations need to clarify what it means by “protect First Nations personal healthinformation” and how that would differ from the general population.


42/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

42

A#C %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Need to work together to better understand, respect and conform to the protocols ofeach First Nations community and cultural competencies/ protocols of health carepractice. Work towards a common understanding of the principles of First Nations

individual/community privacy, confidentiality & ownership of health data/information(OCAP TM ).

1EII%6L 78 P67E@ S234E3327*;

The group disagreed with the statement, they felt this was contradictory: it refers to“each First Nation community” but also a “common understanding of OCAP TM”. It wasfelt to be impossible from a legal perspective and impractical to conform to theprotocols of each First Nations Community.

There will be disagreements even across First Nations communities e.g. First Nationsmidwives are practicing using traditional ways but not are provincially licensed (there isa specific exemption for them in the Ontario legislation.)

The group did understand and support the value and importance of understanding andrespecting First Nations values/culture.

P67E@J3 N$47II$*+%'27*;

None


43/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

43

A#A %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

Areas of trilateral cooperation could include a coordinated approach to aligning:• Legislative Authority;

• Data Governance / Stewardship Model;

• Information Sharing Agreement Model;

• Identify FN Data Steward;

• Breach Processes;

• User Account Processes;

• Data Standards;

• Access Model and Audit;

• Disclosure Directives;

• Security, Threat, and Risk (STRA) Model;

• Privacy Impact Assessment (PIA) Model;

• Privacy Communication / Education;

• Privacy Impact Assessment;

• Security Threat and Risk Assessment and Privacy and Security Liaison”

1EII%6L 78 P67E@ S234E3327*;

The group agreed with the statement. They was felt this list was a good start, but notexhaustive. In addition to “aligning”, the group felt it made sense to explore“simplifying” these areas.

P67E@J3 N$47II$*+%'27*;

More direct involvement of First Nations in jurisdictional eHealth planning, governanceand operations.


44/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

44

4.

Data Flow

The following table outlines discussions and recommendations for effectiveinteroperability and data flow between eHealth applications and initiatives.

"#$ %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

The Vision for the FNIHB/FN managed health system, like that of theprovinces/territories, is that data is collected, data is available, and authorized

individuals use data. We understand that the trends in technologies/data are that datais coming from everywhere; that the analytics on all this data will drive business,actions, and health knowledge; that we need to be agile for systems to be distributed,decoupled, small and mobile (m-health); that interoperability and interconnectivity arethe primary goals. Data must flow to multiple users/uses, including the primary vs.secondary/health system use of data.

1EII%6L 78 P67E@ S234E3327*;

The issue is more complex than this statement. Information is collected in manyplaces. There are privacy issues. Often for legal or legislative reasons, jurisdictionscannot send data into other systems without understanding why they are sending it,

how it will be used. As well, First Nations may not want to feed into the jurisdictionalsystems; they might only want to feed some information inwithout sharing more e.g.they might not want to share sensitive data, such as suicide and teen pregnancy rates.A key challenge is the interpretation of OCAP TM – especially if it is interpreted at thecommunity level.

In general healthcare providers are usually ok with sharing data (primary data for thedirect provision of care) but secondary (aggregated) is more sensitive. Community andhealth system data is where many issues are. Jurisdictions and First Nations mustdevelop a common understanding and vocabulary for the use of data and review,educate and share existing ethics and policies regarding secondary use of health care

data. The Public Health sector is already doing this can we learn from them?

A framework is needed and then the parties can assess every new opportunity toshare data against the framework; normally a Privacy Impact Assessment gets youthere.


45/91


46/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

46

"#C %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

First Nations information governance thinking, processes and structures are welladvanced in most regions and communities. There needs to be more communicationsto the provincial/territorial partners.

1EII%6L 78 P67E@ S234E3327*;

It is important not to assume, the parties should listen, learn and then act.By investigating and determining the requirements before assuming we will betterunderstand the status of thinking, processes and structures.

There is a need for more communications but the amount, type and direction must bedetermined through investigation before making assumptions.

P67E@J3 N$47II$*+%'27*;

Greater dialogue needs to take place between First Nations and the jurisdictions toensure that their requirements and the jurisdictions ability to satisfy them are wellunderstood.

"#A %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

FNIHB supports regional health information management strategies that integrate withprovinces/territories, where required, and support deploying provincial/territorial tools,where available for use by both Band and Federal employees, where practical andefficient.

1EII%6L 78 P67E@ S234E3327*;

As long as the strategies meet the business needs of the communities then this isgood and should be true.


47/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

47

FNIHB wants to work with the communities. The key question is "How do we ensurethat the tools are the most appropriate?! There is work to do to confirm that theproposed tools are sustainable and meet the needs of all parties. The question arises:While this point is view is correct, have we communicated this perspective well enoughto FN? Are they aware that FNIHB wishes to support deployment and sharing of

appropriate strategies and tools where practical and efficient?

P67E@J3 N$47II$*+%'27*;

More discussion is needed between the FNIHB, First Nations and the jurisdictions toensure a clear understanding of the desired health information management strategies.

"#" %&&'()*+,)- . /01223+43 5)1)363+) 789:.9:;?

The FNIHB/Federal Government wishes to avoid the building or deploying of separatenon-interoperable electronic tools where there is a business need to align, integrateand exchange data with provinces/territories, either at the First Nations or FNIHBlevels.

1EII%6L 78 P67E@ S234E3327*;

The Group agreed. The Group understands the need to be flexible. There is a need toleverage and integrate existing information systems; however there should still bechoice for communities. There should be a suite of approved options to select fromwithin a suite of available services in the region. This reinforces the need to be at thesame table when decisions and plans are made. The group felt we have come a longdistance already and we should continue in the same manner.

P67E@J3 N$47II$*+%'27*;

:7*$


48/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

48

2.6. Concluding Remarks and Opportunities

The Convergence Forum demonstrated a general agreement that in order to optimize

the impact of the eHealth investments that have been, and will continue to be made byall levels of government, Canada Health Infoway, and First Nations, that the partiesmust collaborate to bring about the convergence of the infra/info structure andintegration of clinical data to support clinical care. In doing so the following benefitsshould accrue:

• Make equitable the availability, quality, and suitability of eHealth services forFirst Nations.

• Active engagement and involvement of First Nations in decision-making abouttheir health and health care services.

• Ensure “circle of care” is maintained for First Nations receiving care on and off

reserve.• Reduce risks to patients.• Provide better conditions for health care providers.• Better align federal and provincial/territorial responsibilities to First Nations

eHealth services.• Alignment of First Nations eHealth services with the CHI.• Electronic Health Record Blueprint and Pan-Canadian interoperability

agenda.

There is a real urgency for the jurisdictions and First Nations to collaborate andconverge eHealth activities. There must be more communication to ensure we stay on

track by working together. It was felt that this session was a good start in improvingunderstanding and communication.

9*)*(3 %&&'()*+,),3F?

• Services can be provided in a new way and funding can be repurposed. HealthCanada has asked for support from provinces and territories to help avert travelcosts for First Nations travelling to provincial centres by using telehealth (whenappropriate).

• Encouraging responsibility for health and self-care; as well as the prevention ofbehaviorally induced disease. There is an opportunity to leverage health informationto encourage a cultural shift at the individual and community levels.

• Show best practice data vs. own results - to encourage positive change.• The determinants of health go beyond eHealth such as improving the quality and

availability of food, education, clean water, etc.• Don't assume all First Nations face similar conditions; more than one model is

needed. Sometimes remote communities can fare much better than First Nationspeople in downtown urban centres, but there is much variation across Canada.


49/91


50/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

50

3. Appendices

3.1. Appendix A – Forum Agenda

Agenda

eHealth Convergence Forum

June 20, 2012Sheraton Wall Centre

Vancouver, BC

Main Meeting Room Junior Ball Room D

Breakfast Refreshments Served: 8 am - 8:30 am – Junior Ballroom Foyer1. Welcome & Introductions (15 min)

2. Purpose/objectives for this event (15 min)

3. Summary of Health Canada!s First Nations & Inuit Health Branch eHealth directions &

funding/technical/policy support role (60 min)

• Working with First Nations

• Working with other federal departments

Coffee Break: 10 am - 10:30 am – Junior Ballroom Foyer

4. Summary of First Nations eHealth achievements/status & future directions

• First Nations eHealth Context (Richard Jock) (30 min)• Overview of National First Nations eHealth Framework Strategy (Jonathon Thompson)

(30 min)

5. Highlights of Provincial/First Nations eHealth partnerships

• Manitoba eHealth (Liz Loewen/ Darrick Baxter) (15 min)

• BC Trilateral eHealth (Joseph Mendez) (15 min)

Lunch Served: Noon - 1:00 pm – Junior Ballroom Foyer6. Integration Requirements/Considerations:

• Introduction (15 min)

• Roundtable Breakout Groups (90 min)

o Senior Leadership & Governance (leveraging provincial, federal, First Nations,

CHI investments)

o Policy

o Sustainability

o Privacy & Consent

o Data flow

Coffee Break: 2:45 pm - 3:15 pm7. Summary of breakout sessions (Facilitator and Recorders) (45 min)


51/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

51

8. Conclusion & Next Steps: Strategies to innovate & transform eHealth in Canada (All ) (15

min)

9. Final Comments (Roundtable) & Closing Remarks (Facilitator) (15 min)

Adjourn: 4:30


52/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

52

3.2. Appendix B – Forum Participants

Susan Anderson Executive Director EHR Solutions

Health System Performance &

Information Mgmt. Division ABSusan Antosh CEO eHealth Saskatchewan SK

Darrick Baxter eHealth Technology Coordinator Assembly of Manitoba Chiefs MB

Paul Caines CIONL & Labrador Centre for HealthInformation NL

Paul Chittick Sr. IT Analyst Gov't of Canada-Treasury Board GC

* Ernie Dal Grande National eHealth Program Manager Health Canada ON

Kelly Doug Grand ChiefSto:lo Tribal Council, member of the BCFirst Nations Health Council BC

* Nancy Gabor Consultant AMBiT Consulting / COACH BC

Neil Gardner Strategic Advisor eHealth Saskatchewan SK

John Gauvreau Assistant General Manager

Bureau de programme pourl'informatisation du réseau de la santéet des services sociauxMinistry of Health and Socials Services QB

Valerie Gideon ADM Regional Operations FNIHB, Health Canada, HQs (Ottawa) ON

Kim HarveyDir of Architecture, Planning andStandards. CIHI GC

* Jane HoldenExecutive Dir., Investment ProgramsMgmt. CHI QC

Alice Keung Chief Operations Officer eHealth Ontario ON

Liz Loewen Director, Coordination of Care Manitoba Health MB

Susan LogueExecutive Director - BusinessIntelligence, Analytics & Privacy NS Health and Wellness NS

Joseph Mendez CIOInterim First Nations Health Authority -BC BC

Janet Nyberg Manager, Information Systems YK Health & Social Services YK

* John Schinbein

Executive Director, CTF: CanadianTelehealth Forum and ForumFacilitator. COACH BC

Paul ShrimptonExecutive Director, Integrated HealthInformation Technology Ministry of Health BC

* Don SweeteExecutive Regional Director, AtlanticRegion CHI NS

*Jonathan Thompson Director of Health & Social Secretariat Assembly of First Nations ON

* Erin Tomkins Policy Analyst Assembly of First Nations ON

Jim Wolfe Regional Dir. FNIHB, Health Canada, (Winnipeg) MB

* Forum Planning Committee


53/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

53

3.3. Appendix C – First Nations and Inuit Health Branch

Presentation Slides


54/91


55/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

55


56/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

56


57/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

57


58/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

58


59/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

59


60/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

60


61/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

61


62/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

62


63/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

63


64/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

64


65/91

!"#$% '(%")*$ (*+ %,- ./#"$+"0%")*$ -1-(2%, 3)*4-#5-*0- !)#/6 7 8/66(#9 :-;)#%

65

3.4. Appendix D – Assembly of First Nati

first nations and the jurisdictions ehealth convergence

Documents