Canadian Institute for Health Information

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It Takes a Village: Working Together to Develop a Pan-Canadian Paediatric Rehabilitation Reporting System (PRRS)

October 24, 2016

• Sonia Pagura, Holland Bloorview Kids Rehabilitation Hospital• Adrienne Zarem, Family Leader at Holland Bloorview• Siam Javeid, Canadian Association of Paediatric Health Centres• Anne Forsyth, Canadian Institute for Health Information• Ryan Metcalfe, Canadian Institute for Health Information

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  About CIHI   The Canadian Institute for Health Information (CIHI)

is an independent, not-for-profit organization that provides essential information on Canada’s health systems and the health of Canadians.

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The PRRS Story – Today’s Agenda

• Introduction of the Village

•The Motivation: The Gap, The Need

•Data Collection, Submission & Reporting

•National Implementation Strategy

•A Family’s Journey: Involvement and Impact

•The Future & Keys to Success

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The Village

• Canadian Association of Paediatric Health Centres (CAPHC)• Canadian Paediatric Decision Support Network (CPDSN)• Canadian Network- Child and Youth Rehabilitation (CNCYR)• CIHI (Rehab & Ambulatory Program Areas, Client Support, IT, Privacy & Legal,

Data Standards)• Children’s Rehabilitation Organizations• National Rehabilitation Experts (Scientists, Researchers, Clinicians,

Administrators)• Families – their stories, their time, their wisdom

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CIHI’s Strategic Plan 2016 to 2021

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Message from Alexandre Bilodeau

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  The Motivation: The Gap, The Need

• Currently structured under various provincial Ministries

• Inter and intra provincial variability

• Service delivery through various funding (public and private) with various accountability arrangements

• Standardization is required to identify service access issues, improve access and identify sustainability issues

State of the paediatric rehab … a gap existing?

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Where did this PRRS notion come from? Inception of CN-CYR in 2004 – why?

Initial work concentrated on the following: Coalescing people and developing a network; Agreeing on purpose; Establishing structure and; Developing specific and attainable goals and objectives.

Early priority - developing a national report card for pediatric rehab No information in the literature; No consensus across the country on definitions or process; Need to address resources and access to services.

Established Outcomes and Benchmarking committee to investigate and recommend conceptual framework and methodology

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Why is PRRS Important? Because Our Kids Deserve the Very Best!

Nationally, there is no concerted, organized way of tracking the rates of disability in children or their outcomes.

Identification of “Best in Class” centres, which will allow for sharing of best care practices for safe, effective and efficient care

Compare resource utilization to ensure sustainability and accountability of service provider organizations

Reliably predict future trendsCreate a yardstick for service or outcomes improvementEffectively plan our health care services to meet those needs

We Can and Must Do Better To Improve Services and

Health Outcome

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How Will We Achieve This? What is the Goal/Purpose of PRRS Project?• Collect meaningful data from rehabilitation/treatment centres across

Canada for collation, knowledge translation and to support service improvement

• Provide standardized data about a service sector and associated client groups that have traditionally been underrepresented in data collection, reporting and knowledge translation initiatives

• Link datasets across the continuum of care and across the country and potentially across the lifespan;

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What Will the Journey Be?•Focus on outpatient/ambulatory services targeting children

‒ Developmental/behavioural conditions

‒ Neuromotor and neurological conditions

‒ Initial roll out to target children with ASD & CP

•Longitudinal approach with outcomes over the child’s developmental trajectory

Demographics, condition specific

information on admission

Functional participation and

activity outcomes age 5

Functional, participation &

activity outcomes age 10

Functional, participation &

activity outcomes age 15

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• 14• Have evidence for the right treatment, in

the right place, at the right timeClients and Clinicians

• Have evidence to inform quality improvement and resource utilizationHealth Care Organizations

• Have information for continuity of care across settings

Inpatient and community partners

• Have evidence to raise awareness and improve care in CanadaSystem Level Planners

Better Data

Healthier CanadiansBetter Decisions

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  Dataset Creation & Content

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What questions need answering and what data is required to answer those questions?

• A group of subject matter experts collaborated to: ‒ Identify meaningful questions‒ Suggest useful data elements

• CIHI facilitated two small pilot data collection projects ‒ To practice collecting the data‒ To identify data quality issues and challenges in existing processes

‒ To assess the feasibility of scaling-up

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Evolving the PRRS Dataset• CIHI teams then involved in clarifying, strengthening and standardizing

the PRRS dataset to help:‒ Ensure clear and common definitions specified‒ Identified mandatory vs. optional fields‒ Ensure standard codes and formats adopted (e.g. ICD-10-CA) ‒ Create population-specific pick-lists to facilitate data collection ‒ Create a data specifications document for clients and vendors‒ Acquire necessary intellectual property rights to use and report desired

clinical assessment tools

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PRRS Data Elements62 data elements in 6 domains:Domains Example Data

Client Identifiers and Socio-Demographic Data HCN, Gender, Birthdate

Administrative Data Referral Date, Clinical Contact Date

Health Characteristics ICD-10-CA codes

Classification of Severity GMFCS, MACS, CFCS tools

Function, Activity and Participation Pedi-CAT, PEM-CY tools

Intervention Resource Characteristics Types, Frequency and Location of Services Received

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Standardized Point-of-Care Data Collection – Collect Once, Use Many

System

Organization

Individual

• Monitor performance• Demonstrate accountability• Align resources/funding

• Evaluate services and programs• Compare with peers• Allocate resources

• Assess individuals’ health status• Make clinical decisions• Evaluate care

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  The Data Repository

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The data repository: NACRS Clinic Lite

Most jurisdictions have summary information, but there is a gap in patient-

level clinical, operational, quality and utilization data on ambulatory care.

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Data Submission• A new CIHI product, NACRS Clinic Lite (NCL), is being leveraged for

the PRRS project‒ CIHI customized NCL to include the pediatric rehab care specific

tools (e.g. PEDI-CAT and PEM-CY) in addition to the 17 mandatory NCL data elements

‒ Two secure data submission methods available: eFile and web-entry

‒ Provides clients with reports summarizing data submissions and detected errors

‒ Data is securely stored and safeguarded by CIHI

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  Data Reporting

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Data Reporting•PRRS provides a new source of data for an important

population•CIHI is respected source for health related analyses and

reports•Experts in the field are needed to inform focus and content

of new reports•Reports can look at inputs, outcomes, organizational/

jurisdictional comparisons•By linking to other data holdings, continuum-of-care

investigations

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Example Measures:• Number of clients that received treatment at home• Average time between referral and first contact• Number of clients reporting an improvement in function• Number of services received that were not publicly funded

What would you want to know about…• Children and youth that are receiving care? • Services that are provided?• Outcomes that are achieved?

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  CAPHC - Canadian Paediatric Decision Support Network (CPDSN)

  A National Implementation Story

CAPHC CPDSN STRATEGIC PLAN

2016 Collaborative Milestone!!

CIHI / CAPHC support • Provide training and support on:

-Implementation / business process redesign

-Assessment / dataset

-Use of outputs and reports

• Help identify and assist with issues of data quality

• Produce reports from the submitted data

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A National Implementation Plan

Initial PRRS Participating Sites

1. Kitimat Child and Development Centre (BC)

2. Glenrose Rehabilitation Hospital (AB)

3. Alvin Buckwold Child Development Program(SK)

4. Rehabilitation Centre for Children (MB)

6. Holland Bloorview Kids Rehabilitation Hospital (ON)

5. IWK Health Centre (NS)

Dedicated to continuous Growth & Partnership

Onboarding new PRRS Sites A peer-to-peer implementation approach for new members CIHI and CAPHC-CPDSN ongoing Technical Support Working together to provide inaugural 2017 PRRS report

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  A Family’s Journey of Discovery, Value and Commitment

Amira’s Story …..

Getting to Business – Why PRRS?

• Accountability of the system – when, how, what

• Don’t assume that you have all the answers when developing process

• Leading with the Family Voice –partner with me so that we can work on a solution that makes sense

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Partnered Solutions

• In what universe does a 6 page information sheet work?

• Flow diagrams?

• Bulleted points?

• Glossary?

• Did I say I was overwhelmed in information?

• Truly ….. Not kidding ….

Health Literacy ApprovedFamily Approved

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Call to Action

•PRRS is important …..

•Families need to be fully partnered in your solutions for success … uncomfortable maybe …. Necessary for sure

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What this experience has meant to me?

•The condition is hard enough …. The navigation and wait is cruel

•This is not okay BUT …..

•Feeling I have a voice …. Engaged partnership

•Leaving the system better for the next family

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  The Future & Keys to Success

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What will it take to make this successful?

•Effective leadership

•Organizational strategy

•Partnering with families

•Education, information and resources

•Continuous improvement and change management mindset

•Becoming a PRRS member

Leadership

Strategy, Mission and

Vision

Delivery System Design

Culture

Communication and

Information

Family Involvement

Implementation of PRRS

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Impact on the Village?

Family – understanding service & outcomesClinician – standardized outcomes & planningService – resource utilization, planning,

Family – partnered with organization prioritiesOrganization – comparators, planning, advocacyRegion – system planning, resource allocation

Family – provincial & national partnershipProvincial – policy, planning, awareness, fundingNational – PHAC, population planning,

geographic and regional differences

MEGAFamily – networksInternational – Best Practice, Research,

(Population and Clinical)

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Village Dreams • Connected networks across Canada with

the common language of data

• Sharing stories of impact …

• Improving access, models of service delivery, leveraging data for resource allocation for clients/families

• Benchmarking performance … learning from each other to improve the care experience

• Transitions and continuum of care … connecting systems from paeds to adult care

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