B15 Hearing the Story, Changing the Story

AOHC Workshop: Hearing the Stories, Changing the Story The Change Foundation Gerry Campbell Sine MacKinnon Genevieve Obarski

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Workshop Overview • Part One: Hearing the Stories- 15 Minutes • Group Discussion- 25 Minutes • Part Two: Changing the Story- 40 Minutes

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A Minute on The Change Foundation •

Endowed 1996 by the Ontario Hospital Associationindependent, non-profit, charitable; Support, improve health & healthcare delivery in ON

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10 yrs. as granting agency – funding an array of research & projects on drivers of local healthcare change

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2007 – new function – health policy think tank – new focus: health system integration, quality improvement and … improving patient experience www.changefoundation.ca 3

Strategic Goal To improve the experience of individuals and caregivers as they move in, out of, and across Ontario’s healthcare system over time

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Overview of Strategic Plan 2010-2014: Hearing the Stories, Changing the Story Research Health System Consultations

Public Engagement

Literature Reviews

Loud and Clear Panorama

Community Level Surveys Capstone Summit 2015

Patient Centered

Policy Analysis

Co-design

Continually along the way

Northumberland PATH

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Overview of Strategic Plan 2010-2014 Hearing the Stories, Changing the Story

Capstone Summit 2015

Patient Centered Co-design Northumberland PATH

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change the debate, change the practice, change the experience.

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Northumberland PATH A community based partnership of patients, caregivers and health care providers A partnership who will work together to understand and improve the experiences at key transitions in the healthcare system Grounded in engaging patients and their caregivers in experience based codesign Funding by The Change Foundation to: Building and supporting a patient, caregiver, provider coalition; Engaging patients and their caregivers in experience based co-design; Managing the PATH project work; Providing process re-design and improvement expertise; Measuring the outcomes of the newly designed processes 7

Our path to…….

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Addresses what we learned from patients and their caregivers in our recent work: Navigating the system- Is anyone joining the dots?

Getting lost in the transition- Who is the puzzle maker?

Frustration with redundancy, repetition and delay Communication- Who is listening?

Integrated healthcare is key to improving patient experience

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Links care transitions and health system improvement work under the umbrella of patient centered co-design.

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What we learn in PATH will be used to improve care transitions for everyone in Ontario 8

What are the Goals of Northumberland PATH? In Northumberland : • Improved healthcare experiences and transitions for seniors with chronic health conditions/families • Seek solutions to the real needs of patients and caregivers For The Change Foundation: • Test a totally new approach for Ontario – experienced based healthcare co-design • Prompt system-wide change

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Overview of Strategic Plan 2010-2014: Hearing the Stories, Changing the Story Research Health System Consultations Literature Reviews Community Level Surveys Capstone Summit 2015

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Overview of Strategic Plan 2010-2014: Hearing the Stories, Changing the Story Public Engagement Loud and Clear Panorama Capstone Summit 2015

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Key part of the plan – public/patient engagement •With whom? Healthcare’s stewards, stakeholders, users – missing piece of puzzle Province-wide engagement with srs/caregivers (fall 2011) Public engagement panel (2012-2015) Province-wide engagement, round 2 (2014) Summit (2015) •Why? Premise and Promise

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What we heard Loud and Clear ..from province-wide engagement with seniors/families, friends •The primacy – and problems – of primary care •The importance of connections and clarity about next steps •The communication deficit •The inclusion factor – hey what about us?

•Issues of equity –don’t let people facing barriers fall behind Double vulnerability – alone, and with cognitive or mental health challenges People wondered how seniors with capacity deficits would cope with transitions if they didn’t have a caregiver or family or friend support. Who would coordinate their care, take them to appointments and advocate on their behalf? Loud and Clear

http://loudandclear.changefoundation.ca/

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“I don’t know what’s happening next, but where do you go to find the answers? Seems like there are roadblocks set up in the system that make it hard.” “ with a specialist. We waited five months “Our doctor sent us for an appointment and never heard anything, so I called and they had no record of the appointment. It would be a good idea”if someone from the doctor’s office called the patient once an appointment is made to confirm.”

I’ve never been asked as a caregiver, 'What’s convenient for OrFoundation 'How would Theyou?'

Change this work in your family?' instead it’s 'This is what we’re going to do for you.' There's no discussion of collaboration.”

Embedding patient/caregiver views, & voice into Foundation’s work • PANORAMA: panel of Ontario residents exchanging views, experiences and advice to improve healthcare – launched September 2012 • 32 members – reflect diversity of the province, share common experience – all have chronic health conditions or care for someone who does • Demographics:

Ages: 24 to 83 (>50% over 55) Household income: < $20K to > $100,000 8 Non-European 8 Caregivers 4 Both caregiver and patient

• Regions: Ajax, Almonte, Avonmore, Barrie, Caistorville, Cambridge, Dryden, Fort

Frances, Hanover, Kingston, Leamington, Markstay, Mississauga, Niagara-on-the-Lake, North Bay, Oakville, Ottawa, Peterborough, Richmond Hill, Sarnia, Sault Ste. Marie, St. Thomas, Thornbury, Thornhill, Toronto City, Waterloo

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PANORAMA’s scope and focus • To provide a wide-angle, province-wide lens on the workings of PATH • To advise the Foundation on emerging issues relevant to integrated, patient-centred healthcare • To inform Foundation’s thinking, decision-making on its engagement, events, products, plans, etc.

• To identify its own priority issues to explore (within mandate)

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Meet PANORAMA panelist Gerry Campbell

Citizen, patient, caregiver. Decades of experience navigating in, outs, in-betweens of Ontario healthcare Hear his stories and experiences â&#x20AC;&#x201C;and what theyâ&#x20AC;&#x2122;d taught him Listen to his hopes for PANORAMA and for Changing the Story 18

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Whatâ&#x20AC;&#x2122;s YOUR engagement experience?

Audience Polling Questions

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Part 2: Changing the Story

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Health Links •25 Early adopter communities-(several were PATH runner-ups) •Influenced by PATH initiative •Similarities w/ PATH: involves Primary Care, community partners collaborating and sharing information, local context honored, focused on seniors with chronic conditions, focused on streamlining transitions • PATH Distinctions: experience based co-design, full care continuum represented, strong patient/caregiver influence, financial investment

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PANORAMA’s place in Changing the Story • Inputs and potential impact • Advice on Primary care transitions • Informed dialogue on pros/cons of health system navigators – advice part of Foundation’s report, funnelled to Health Links, gov’t, etc.

• Providing province-wide perspectives on PATH – Video from PATH-PANORAMA engagement

Back to ………

Goals ?

What are PATH Measures/Evaluation?

• Improve healthcare experiences and transitions • Seek and Design solutions to the real needs of patients and caregivers

• Test a totally new approach for Ontario – experienced based healthcare co-design • Prompt system-wide change in Ontario

• Experiences of people served

– Person centered care practices in place – Care experience , anxiety, etc.

• Effectiveness of improved transitions

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– Patient Activation Measure – Patient Assessment of Care for Chronic Conditions – Readmissions, unplanned ED visits

• Impact of Patient Participation – experienced based healthcare co-design • Value of broad partnerships for systemwide change • Understand spread of innovative models

change the debate, change the practice, change the experience.

How will PATH Partners Work Together ?

5 project teams, each working on a different transition improvement idea, will use the experience based design model to design improved transitions; Project teams composed of 4-6 patients/caregivers, and several providers from PATH partner organizations; Teams will design and test out solutions on small scale, refine ideas, and re-test;

Successful solutions will be tested on a larger scale with seniors in the community;

Success of the solutions will be measured all along the way

What is the Patient Centered, Experience Based Design (ebd) Model?

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Starts with a partnership between patients, caregivers and staff Emphasizes experience rather than opinion or attitude Uses story telling to identify touch points in the health care journey Partners work together on co-designing better processes Systematic evaluation of improvements and benefits

What are the Transition Improvement Ideas?

Planning Ahead and Aging Well My Health Story

• Aging Well Kit, Aging Well Plan • Raising awareness in community • Life story • Health Story

Patient Centred Care Provider Model

• Building relationships w/ providers • Person centred care transitions

Transition Coaching

• Transition partners trained • Matched with patients in transition

Funding Model

• Explore a patient centered funding design consistent with Excellent Care for All Act

PATH Progress to Date Infrastructure: Organizing, Relationship Building, Hiring Project Staff, Steering and Subcommittees, Agreements/Terms of Reference

Capturing Stories: Listening to Patients, Caregivers and Providers, Community Survey

Project Team Recruitment: Patients, Caregivers, Staff, & Providers assembled into Project Teams and just starting………..

Improvement Work: Understand and Improve Using ebd Model, Test and Tweak Improvements, Measure Success

For Further Information •

PATH Updates http://www.changefoundation.ca/projects/path/

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Experience Based Design http://www.institute.nhs.uk/ebd http://www.kingsfund.org.uk/projects/point-care/ebcd http://www.changefoundation.ca/events/hot-talk-2012-patient-experienceredesign-healthcare-services/

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Patient and Family Centered Care http://www.ipfcc.org/ http://planetree.org/

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Capstone Summit 2015 - Knowledge Exchange • Patient and Caregivers • Policy Makers • Health Care Providers • Health Care Funders

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• Where do you go from here…….

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