Oct 24 CAPHC Breakfast Symposium - Sponsored by CIHI
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CIHI Sponsored Breakfast Symposium It Takes a Village: Working Together to Develop a Pan-Canadian Paediatric Rehabilitation Reporting System (PRRS)
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Oct 24 CAPHC Breakfast Symposium - Sponsored by CIHI
- 1. Canadian Institute for Health Information cihi.ca @cihi_icis 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
- 2. 2 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.
- 3. 3 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
- 4. 4 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
- 5. 5 CIHI’s Strategic Plan 2016 to 2021
- 6. 6 Message from Alexandre Bilodeau
- 7. 7 The Motivation: The Gap, The Need
- 8. • 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?
- 9. 9 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
- 10. 10 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 trends Create a yardstick for service or outcomes improvement Effectively plan our health care services to meet those needs
- 11. 11
- 12. 12 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;
- 13. 13 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
- 14. 14 • 14 • Have evidence for the right treatment, in the right place, at the right time Clients and Clinicians • Have evidence to inform quality improvement and resource utilization Health Care Organizations • Have information for continuity of care across settings Inpatient and community partners • Have evidence to raise awareness and improve care in Canada System Level Planners Better Data Healthier Canadians Better Decisions
- 15. 15 Dataset Creation & Content
- 16. 16 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
- 17. 17 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
- 18. 18 PRRS Data Elements 62 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
- 19. 19 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
- 21. 21 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.
- 22. 22 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
- 24. 24 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
- 25. 25 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?
- 26. 26 CAPHC - Canadian Paediatric Decision Support Network (CPDSN) A National Implementation Story
- 27. CAPHC CPDSN STRATEGIC PLAN
- 29. 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 29
- 30. A National Implementation Plan
- 31. 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)
- 32. 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
- 33. 33 A Family’s Journey of Discovery, Value and Commitment
- 35. 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
- 36. 36 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 Approved Family Approved
- 37. 37 Call to Action •PRRS is important ….. •Families need to be fully partnered in your solutions for success … uncomfortable maybe …. Necessary for sure
- 38. 38 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
- 39. 39 The Future & Keys to Success
- 40. 40 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
- 41. 41 Impact on the Village? Family – understanding service & outcomes Clinician – standardized outcomes & planning Service – resource utilization, planning, Family – partnered with organization priorities Organization – comparators, planning, advocacy Region – system planning, resource allocation Family – provincial & national partnership Provincial – policy, planning, awareness, funding National – PHAC, population planning, geographic and regional differences MEGA Family – networks International – Best Practice, Research, (Population and Clinical)
- 42. 42 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
Editor's Notes
- When we talk about the “village”, who are we talking about? Siam to help fill this in, if desired? Could likely be presented in a more visually-appealing way – e.g., interconnected web “Will be revisiting this notion, highlighting various ‘community members’ throughout the talk”
- Pick whatever we want to call this Envision this section being Sonia’s – to set up the rationale for the project
- Taken from a different slide deck
- Taken from a different slide deck Material here (http://www.caphc.org/paediatric-rehabilitation-reporting-system-prrs/) may be of use.
- Most members use ICF-CY as a guide to select outcome measures (53% of members) 87% use impairment and activity measures 63% use participation measures
- Taken from a different slide deck; not sure we want/need it here Similar to previous slides
- Ryan or Anne So the motivation, the need, the gap is pretty clear. Now then, what questions need answering and what data is required to answer those questions? A group of subject matter experts collaborated for a number of months (if not longer!) to try to outline the information that is needed and provide an initial list of pieces of data that organizations already collect or could be reasonably asked to collect. CIHI facilitated two small pilot data collection projects to permit facilities to practice collecting the data and assess the feasibility of scaling this up. Data was collected and summarized and DQ issues were highlighted.
- So the motivation, the need, the gap has been established. Now… A group of subject matter experts collaborated for a number of months to outline the information that is needed and to provide an initial list of data that organizations already collect or could be reasonably asked to collect.
- Do we need to change the word “problem” here? Will people be bothered? I recall this being an issue back when we were migrating the dataset to NACRS Lite. Emphasize the importance of standardization.
- Dataset for the initial 3-year pilot
- Wanted to ensure that the dataset be created with different levels of analysis in mind, from the micro, client-level (e.g., what information should be collected to aid clinical or needs assessments?) to the organizational level (e.g., how many people are we treating? What do they look like? How long does it take us to get a client from Point A to Point B in their treatment?) to system level (e.g., What is working and where are there issues? Are there ‘top performers’ that can serve as an example for others? Etc.) Goal to collect data that is meaningful even if it is not submitted to a central repository like CIHI
- Anne Now that you know what you’re going to collect, need some means of collecting it across organizations and jurisdictions in a centralized, standardized way, to be housed securely and subsequently analyzed and reported on
- Ensure highlight the privacy and data security aspect – could get some talking points from PLS folks or their website Also want to talk about the submission support role that Anne Cote plays?
- Everything up to now has been about “data in” – creation of a dataset to be collected, creation of an IT infrastructure, implementation support at the facility level. Here, we’re talking about “data out” – taking all of this collected data and turning it into ‘information’ to be shared and used for comparisons and decision making It’s worth noting that the act of being involved in an endeavor like this, even before any reports are produced or actioned, tends to still result in desirable changes within the system at participating organizations. These changes tend to come as a result of being forced to think about quantifying what one does in provided care and how one does it, how to quantify the impact that care is having, to think about what meaningful questions exist that might be answered with data, to think about the language that you use to describe the care that you provide, to take a look at the way in which care is delivered (the process), to think about the process of collecting accurate, standardized data… and to discuss these things with others who are ostensibly doing the same things as you but may be doing them in very different ways, or naming things differently, …
- Finish with ‘Why does any of this matter?’ – Adrienne is joining us today to provide some insight from a family perspective
- Siam to speak to this section?
- Mourning – the loss of what I thought would be, what the ‘diagnosis’ day contributed to Overwhelming – so much information, so much jargon, so much planning, so much cross connectivity of systems, so much, too much Information Overload – the amount of information given to a ‘new’ family with the expectation of understanding it all and knowing what to do Roller coaster – emotionally, physically, mentally was a roller coaster and trying to navigate, support, be a pillar of strength, retain normalcy and still process the information of what this meant, the uncertainty Frustration – doesn’t the system have it fixed yet …. I am not the first family receiving this diagnosis …. What do you mean you don’t have any information on wait times, outcomes, geographical differences, therapy models REALLY !!!!!! Strength – knowing that I had a role, could be the champion, could lead this in a way for families, could lead through innovative partnership and ultimately the strength to make it better for other families.
- Presently the system does not have a centralized way of collecting information on childhood disability that can be shared not only within an organization, but across organizations, provinces, regions etc… that can help to influence policy, resources, planning, funding. Why is this important …. As a parent and user of the system, I am so fully aware that resources are limited, often at the mercy of lobby groups, and ultimately, it is me and my family trying to figure out, where do we go to provide the best opportunity for my child to navigate and become an advocate for themselves. There are families, that move homes, regions, provinces just to get better care … often these moves are without data, without concrete information just on the hope or word from an internal network that things are better. What we need, the collective WE … is this system of accountability that helps us all make appropriate decisions, repurpose resources to address bottlenecks in services and ensure Equitable (not equal) flow of resources. PRRS can do this !!!!!!! How – by collecting standardized information that is not only clinically relevant, but also relevant to families such as wait times, classification codes, outcome measures …. This helps us partner together to influence system change. We can understand the regional differences, provincial differences and figure out a collective solution. What – we need organizations and families to commit to this and broaden the collection of information, in partnership with CIHI to all childhood conditions …. While my story is about autism, there are other parents that need this information about their own child’s condition to help better understand how we move forward in better health outcome. What has been my role …. First it was learning what the heck PRRS is, getting people to partner with me in a way that I could be helpful, informing and an equal at the table… Thanks Sonia … Its understand that we all have strengths to bring to the table to make this a better experience and flow (flow meaning efficiency, effectiveness, fiscal stewardship, outcome, safety etc…) for administration, clinicians, families and most importantly our children. Here is an example of how this worked …. Assessment – what exactly were you asking, when and how it was being asked and being conscientious of what I can and cannot commit to. The timing of information …. When you are giving a impactful diagnosis or information …. I just need to know the bare minimum … in survival mode at this point. I can provide what you need, but be respectful of when its being collected. I will show you the result of how to share information that is easy for families to understand.
- Adrienne to finish the presentation?