FIRST NATIONS HEALTH DATA MANAGEMENT: A DATA MANAGEMENT MODEL AND A PRACTICAL INITIATIVE TO IMPROVE IMMUNIZATION DATA MANAGEMENT WITHIN FIRST NATIONS HEALTH CENTRES Health Forum February 24, 2016
2 Agenda Who we are and a brief background Overview of Session Objectives Group Discussion: Identifying and Categorizing Common Health Centre Data Management Needs Overview of Data Management Activities, Context, Challenges, Components and Next Steps Applying Data Management Concepts: Improving Immunization Information Management Overview of Common Types of Electronic Clinical Health Information Management Systems; Mapping Needs to Systems Investigating Incremental Pathways for Improving Immunization Information Management Share Success Stories Questions, Feedback and Take Home Messages
3 Who we are Lily Menominee-Batiste, Chiefs of Ontario Matthew Resmini, Chiefs of Ontario Sally Gaikezheyongai, Chiefs of Ontario Karl Mallory, Mallory Consulting Ltd. Lisa Wilson, Mallory Consulting Ltd. Maureen Taylor, Mallory Consulting Ltd. Collectively, we ve worked with dozens and dozens of First Nations in multiple provinces We ve had the opportunity to learn first-hand from Health Centre staff about their needs, desires, frustrations and successes related to information management And we ve helped to implement and coordinate the use of electronic systems through many successful initiatives
We ve spent a lot of time on the ground
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we appreciate travel logistics 6
we ve worked with Health Centres big and small, urban and remote 7
and we ve helped many to access and use beneficial health information systems. 8
9 Session Objectives Discuss and describe the typical types of information that First Nation Health Centres manage Learn about the components of data management and how they can be applied to improving immunization information management Learn about 3 common types of electronic health systems used in First Nation Health Centres: Public Health (Panorama), community Electronic Medical Records System (cemr), Physician Electronic Medical Records System (EMR) Understand which type of system manages each type of information Learn about some First Nation information management success stories Develop an improved ability to plan for your Health Centre s information management needs
10 Health Centre Info Management Needs HR data Administration data Funding / financial / agreements data Infrastructure data Health / Program data Health records Community data Health program management data Reports Anything else? This is our focus today
Health Centre Info Management Needs Medical Plan Billing NIHB Admissions Discharge Transfer Risk Factors 11 FASD Client Demographics Notifications Imms Maternal / Child Contra- Indications Chronic Disease Outbreak Primary Care Allergies Vaccine Inventory CD Rx / Drug Mental Health Care Plans Dental Therapy Substance Use Nutrition (CPNP) Patient Travel Diagnostic Imaging Home & Community Care Referrals Traditional Practices CHN IRS COHI Lab
Accreditation EMR/cEMR Telehealth ON ehealth Reusable First Nations Health Service Organization ehealth Foundation Network Connectivity Support Model: User, P&S and Data Governance Support ehealth/provincial Requirements Provincial Standards Integration Legislative Authorities First Nations Requirements First Nations Health Information Governance P&S Framework 12
13 Data Management Model Policies, processes, procedures standards, tools, etc. are built for each component that: Establish appropriate data governance and information sharing practices Establish secure technology protocols to protect the data and provide authorized access regardless of where the data is stored Support planning and implementation activities Ensure accurate, complete and timely data is available to support First Nation communities in reporting, survey completion and in First Nations-driven research
14 Component: Data Governance Planning & Implementation Data Governance Access & Technology Reports, Surveys & Research Principles: Govern and protect all First Nations data & information wherever it resides Protect and support Nation members/customers privacy rights Protect and support First Nations corporate rights Align with OCAP, Nation laws and Canadian / Provincial Privacy laws Define Nation data unique identifiers Consider all data collection, uses, and disclosures Multi-lateral agreements Identify gaps in Canadian and Provincial laws and pursue changes Data Governance Building Blocks: Data Governance Toolkit (Model, Policies, Audit) Privacy/Security Toolkit (Policies/Laws, Procedures, Audit) Data Gov. & Info. Sharing Agreement Templates Data & Information Inventory Privacy Legislation Gap Analysis & Recommendations
15 Data Governance Component: Access & Technology Planning & Implementation Access & Technology Reports, Surveys & Research Principles: Continue to understand the status of Nations data access and technology capacity, challenges, etc. Nation-driven technology strategy Data access technical enablers Access & Technology Building Blocks: Data Access / Technology Assessment Tool Electronic Data Management Strategy Data Access & Audit Standards & Tools Electronic Data Management Tools
16 Component: Planning & Implementation Planning & Implementation Data Governance Access & Technology Reports, Surveys & Research Principles: Nation-based longterm visioning and planning Manage change Implementation impact assessments and tools Provide a common way of evaluating change and acting upon it Do not over-engineer Planning & Access & Implementation Technology Building Blocks: Visioning & Planning Tools Impact Assessment Tools Implementation Planning Tools, Standards, Resources
17 Component: Reports, Surveys & Research Planning & Implementation Data Governance Access & Technology Reports, Surveys & Research Principles: Meaningful and valuable survey and research results that support each Nation s vision and planning needs Meaningful Trilateral reports that support planning, management, and evaluation Meaningful population-based analytics Publications vetted by Communities/Nations or their delegates Reports, Access Surveys & Technology & Research Building Blocks: Standards Protocols Processes
Benefits An effective Data Management Model is a foundational component of First Nations health data management Includes policies, processes, procedures, standards, tools, etc. that ensures Appropriate data sharing arrangements are in place and roles & responsibilities understood Fair / equitable access to standard tools and technology; no community is left behind Planning activities consider reporting requirements so that the right data can be collected First Nations communities have the necessary data to support informed and strategic decision making to improve their health and wellness
19 Data Management Challenges There are many activities underway that support the collection, use and disclosure of First Nations data Appropriate data governance practices and information sharing agreements are not always in place A standard mechanism for accurately identifying First Nations data is not available for all data sources Much of the data used for population and program reporting is paper based; databases if they exist are not linked or interoperable Data used for reporting is not always accurate, complete or readily available Standard policies, processes, procedures, tools are not in place to support these data management activities It is not always clear how decisions are made about the access to and use of First Nations data, nor how use of the data is benefiting First Nations communities or individuals Findings: Data Management Working Group Orientation Session September 23-24, 2015
20 Data Management Context Driven by First Nation needs and priorities Supports Trilateral First Nations Health Senior Officials Committee (TFNHSOC) leadership and activities of its working groups Build understanding and capacity for First Nations data management with a focus on education, communication Working to ensure First Nations Communities have necessary data to improve their health and wellness
First Nations Data Management Activities in Ontario Collaborative work aimed at improving the health care of First Nations 21 COO Support Initiatives Health Promotion Environmental Scan ehealth Strategy Broadband, Telehealth, etc. Panorama Immunizations COO Health Portal First Nations In Ontario TFNHSOC Data Governance Committee Surveillance and Research Surveys RHS OFNOHS REES Linkage Studies Cancer Opiate Mental Health and Addictions Community Wellness Development Prescription Drug Abuse Telemedicine Public Health Service Delivery Models / Tools Development Diabetes & Chronic Disease (Cancer) Data Management Direction on data governance, management, education, communication, policies, tools, etc.
First Nations Data Management Activities in Canada 2005 BC Transformative Change Accord o Agreement between First Nations Leadership Council, Province of British Columbia, and the Government of Canada signaled beginning of a new relationship 2007 Assembly of First Nations o OCAP: Ownership, Control, Access and Possession First Nations Inherent Right to Govern First Nations Data 2010 BC Tripartite Data Quality and Sharing Agreement (TDQSA) o Aimed to improve the quality and availability of First Nations data through the appropriate use of the First Nations Client File (FNCF) to monitor health status and the performance of health programs 2013 First Nations Data Governance Policy o o Community-based data governance policy for discussions, negotiations and cooperation between First Nations and stakeholders such as governments and universities Developed by Atlantic Canada s First Nation Helpdesk, First Nations Education Council and Keewaytinook Okimakanak 2014 BC First Nations Data Governance Framework o Comprehensive framework with specific tools and processes that establish and actualize our Nation s direct and active involvement in owning and controlling the Nation s Data, as governing our Data
23 Group Discussion Do you have examples of activities that would have been improved if the data management components had been considered from the start? o o Do you have clients that receive health services from different providers? Is the information from the other provider readily available to you? Have you ever been asked at year end to compile program-based statistics of the related services you delivered throughout the year?
24 Next Steps Chiefs of Ontario is working to set up and activate the Data Management Working Group (DMWG) o 4 staff from COO have been identified to support the DMWG o The Health Coordinating Unit (HCU) was presented with an approach for including First Nation representatives on the DMGW The 3 First Nations Ethics Centres would each nominate a representative to the working group 2 representatives from Trilateral First Nation Health Senior Officers Committee (TFNHSOC) 1 representative from Knowledge Management Advisory Group (KMAG) 1 representative from the Data Governance Committee o There was general support for this approach from HCU, and Linda Ogilvie, the COO Public Health Lead, is now discussing this approach with Independent First Nations for consensus There is benefit from a strong and effective data management function (i.e. we can t manage what we can t measure)
Data Management Component: Access & Technology Improving Immunization Information Management 25
26 Vision for Immunization information Management Access to comprehensive immunization information management tools and integrated immunization data provided to First Nation and Health Canada immunization service providers who support and/or deliver immunization services on-reserve Available to communities where immunization services are delivered regardless of size
27 Benefits Supports improved health outcomes for First Nation clients Provides access to timely, accurate, and complete information and decision support tools o Nurses won t have to call around to various health professionals to collect client immunization information Supports reduction in risk of over / under immunization to clients Reduces child suspensions from schools off-reserve due to incomplete immunization history Addresses patient immunization safety concerns Reinforces clinical standards Compliments services provided by EMR or cemr Supports data exchange with EMR or cemr provided that vendor has developed a compatible import / export function
28 Health Centre Data Management Needs Panorama continues to be the preferred tool to manage immunization information with provincial data
29 Health Centre Data Management Needs Provincially-certified physician Electronic Medical Record (EMR) system support primary care & managing local immunization data EMRs do not currently have the ability to exchange client and immunization data with Panorama Requires dual data entry to keep Panorama current and correct MOHLTC has indicated there are plans for EMR integration; date has not been finalized
30 Health Centre Data Management Needs Mustimuhw supports service delivery, managing local immunization data, forecasting, and Health Canada reporting Supports two-way exchange of client demographic and immunization data with Panorama in BC Mustimuhw is the only known community EMR (cemr) available in Canada that supports First Nations requirements
Health Centre Info Needs 31 Community Electronic Medical Record Imms Records NIHB Client Demographics CHN Imms Maternal / Child Dental Therapy Substance Use Risk Factors Client Demographics Chronic Disease Patient Travel Mental Health Home & Community Care Care Plans COHI Nutrition (CPNP) Referrals FASD Traditional Practices Physician Electronic Medical Record Client Demographics Primary Care Referrals Medical Plan Billing Imms ADTS Rx / Drug Chronic Disease Lab Health Centre information management requirements should drive system selection/adoption Depending on identified requirements, one, two or all three types of system may be needed Although some overlap exists across them, the three system types are not alternatives to each other
32 Access to the Ontario Instance of Panorama While access to integrated immunization data has yet to be implemented, FNPDiO Project remains committed to achieving this goal First Nation and Health Canada nurses need access to the same tools / functionality / information as their PHU counterparts for the purpose of managing immunization Engagement with the province, federal government and First Nations to establish appropriate service agreements has been slower than expected The continued evolution in the provincial approach to providing immunization information management tools and processes at the client, provider, and population levels has added additional challenges o More change in the last 2 years than in the previous 5 years Additional time is required to address the outstanding Panorama activities
33 Initial Subscriber Engagement Engagement underway to develop and explore opportunities to improve immunization information management Investigating opportunities to understand requirements and identify solutions Conducting a pilot implementation to confirm improvements are achieved o Some improvements may be unique to a community Sharing results with communities that deliver immunization services Engaging communities based on resource availability Next Steps: Engage Secondary Subscribers (~18) who have already expressed an interest in becoming involved to assist in the evaluation process
34 Are immunization services delivered in your health centre? Would your health centre staff like to get involved? Health Centre staff that may be interested: o o o Health Director/Manager Privacy & Security Lead Community Health Nurse(s)
35 Group Discussion What advice and guidance do you have? What priorities do you see for your health centres? Are there tools or information that would help you determine the priorities for information management in your health centres? Handout: Priority Pathways Analysis Tool o o A way to structure discussions when selecting a system Helps ensure the system meets the health centre s information management requirements Identify the types of clinical providers that require access to the system Identify their purpose for access to the data that will be documented in the system Select the bubbles in the system boxes that match the data needed to support their service delivery (consider: view, update, reporting, requirements) Selection pattern can inform priorities related to system type (multiple priorities are OK)
36 Contact Information Contact Person Contact Information Lily Menominee-Batise 705-268-6305 Lily@coo.org Matthew Resmini 416 597 1266 ext Sally Gaikezheyongai 416 597 1266 ext 262 matthew@coo.org Sally.Gaikezheyongai@coo.org Karl Mallory 250-818-7702 kmallory@mcltd.ca Lisa Wilson 250-812-2651 lwilson@mcltd.ca Maureen Taylor 250-656-2484 mtaylor@mcltd.ca