Peeling Back the Onion: What are Patients and Their Caregivers Actually Saying About Their Health Care Experience and What Does it Mean for the Delivery of Care? Cathy Fooks The Change Foundation April 18, 2013 SMH Clinical & Population Research Rounds
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Peeling Back the Onion: What are Patients and Their Caregivers Actually Saying About
Their Health Care Experience and What Does it Mean for the Delivery of Care?
Cathy Fooks
The Change Foundation
April 18, 2013
SMH Clinical & Population Research Rounds
The Change Foundation????
• Charitable Foundation set up in 1995 by the Ontario Hospital Association
• $55 million endowment – spend the investment income based on Board approved strategy
• Currently focused on improving the patient and caregiver experience for people living with chronic disease
• Three buckets of work:• Policy analysis and advocacy• Citizen/patient engagement• Quality improvement with an emphasis on experience-
based design (EBD)
Focus for Today
1) Regional Consultations – LOUD AND CLEAR
2) Current Experiences - PANORAMA
3) Experience Survey – Cobourg/PATH
4) Framework to Help Clarify Discussions
5) Evidence of Impac
6) Implications for System Design
LOUD AND CLEAR
Seniors and Caregivers on Navigating
Ontario’s Health Care System
Six Regional Consultations
• Locations: Ottawa, Dryden, Timmins, Peterborough, London, Toronto for face to face discussions
• Participants recruited through local providers (hospital, LTC, FHT, CHC)
• Online webinars for those who did not attend in person
• Discussion guide sent out in advance
• Keypad voting used for in person sessions
Online Story Book
The numbers on navigating healthcare transitions
N=95
Some of the narrative…
“If someone had just sat down with us to explain what was next in our care, it would have made a huge difference.”
I’ve had four discharge experiences from hospital back to nursing homes. The problem is that no one seems to understand the system. There is no system map to explain how it works. People explained parts of the system but not the overall system.”
Some of the narrative…
“When I called the hospital to explain the problems with the transition home, all I got was ‘sorry you feel this way about your dad’s discharge, but he was ready to go’ Why was there no home safety assessment prior to getting home and why was there no clear information about what was going to happen that my mom could understand?”
“I’ve never been asked as a caregiver, ‘what’s convenient for you?’ or ‘how would this work in your family?’ Instead its ‘this is what we are going to do for you.’
Pointing out the positives…
• Huge support for team based care and role of nurse practitioners who have time to spend with patients.
• Recognition that once a diagnosis was made, support was more clear – in particular cancer services and Alzheimer’s organizations were referenced.
• Distinctions made between individual health care workers and the organizations within which they worked.
Overall themes…
• Primary care - disorganized, not connected to rest of the system
• Connecting the dots – hard to do and not a lot of help
• Communication – variable, personality driven rather than system driven
• Inclusion – certain disregard for family members and their contributions
• Equity – despite above, recognition that those without family were even less supported
PANORAMA
A Panel of Ontario Residents
Exchanging Views, Experiences
Composition of Panel• 32 members• Age range 24 – 83• More than 50% over 55• All 14 LHIN regions are represented• Ajax, Almonte, Avonmore, Barrie, Caistorville, Cambridge,
Dryden, Fort Frances, Hanover, Kingston, Leamingtron, Markstay, Mississuaga, Niagara-on-the-Lake, North Bay, Oakville, Ottawa, Peterborough, Richmond Hill, Sarnia, Sault Ste. Marie, St. Thomas, Thornbury, Thornhill, Toronto and Waterloo.
• Household income ranges from under $20,000 to over $100,000• 20% come from non-European backgrounds• 20% are caregivers and four people are both caregivers and
patients with chronic disease
System Usage in the Past 24 months
FHT
ED
GP solo
GP group
NP clinic
Walk in clinic
Telehealth
0% 10% 20% 30% 40% 50% 60% 70% 80%
30%
70%
52%
44%
11%
22%
30%
Hospital Related Transitions in Past 24 months
ED to Hosp
Hosp to Home
Hosp to Home with Home Care
Hosp to LTC
Hosp to Rehab
0% 5% 10%
15%
20%
25%
30%
35%
40%
45%
38%
42%
27%
4%
12%
HOW DO THEY DESCRIBE THE HEALTH
CARE SYSTEM?
How do they describe the health care system?
• A safe with a patient trying to crack it open – to show limited patient access to their own health care information
• A question mark around the word diagnostics – to reflect doubt while waiting for, or interpreting, test results
• A hamster running on a wheel – to show the challenges of accessing uncoordinated services
How do they describe the health care system?
• A balanced scale – to show the two sided experience of good care/poor care and that the level of service is not the same across the board
• A big doctor with his arms around his chest and behind him a little person – to show the patient feeling they are without authority or rights
HOW DO THEY VISUALIZE THE SYSTEM?
COMMUNITY SURVEY: CURRENT EXPERIENCE IN
NORTHUMBERLAND(HOME OF OUR PATH PROJECT)
Methodology
• Telephone survey was administered by Ipsos in West Northumberland
• Patients: 18 years of age or older, having one or more long-term health conditions & contact with health care system at least 5 times a year. (50% over the age of 60)
• Caregivers: who substantially assist family/friend with health care needs.
• Pre-test was conducted prior to full launch.
• 801 surveys were completed with patients (554) and caregivers (247) Margin of error +/- 3.4%, 19 times of 20.
Patient and Caregiver ProfileCaregiver – Profile
Patient
Caregiver
69%
31%
Male Female
41%
59%
27%
57%
11%3% 3%
Less than $45,000
$45,000 to less than $75,000
Over $75,000
47%
22% 19%
Frequency of Transition Experiences
85%
56%53%
30%
17%
2% 2%
Small Bases
Patient anPrimary and Speciality Care Caregiver – Prire
I felt cared for by the medical specialist or outpatient specialty service as soon as I arrived.
The medical specialist or outpatient specialty service staff was informed and up to date about my health care needs.
All my questions were answered.
The medical specialist or outpatient specialty service staff was up to date regarding the medications I was taking.
It was easy for me to get to the medical specialist or outpatient specialty service office.
When I went back to see my family doctor/primary care physician, they were informed and up-to-date about the care I received from specialist doctors.
Were you anxious about the transition between your home and the hospital?
Yes28%
No70%
Were you able to express these anxieties to….?
Did they help to relieve your anxiety?
Yes25%
No72%
67%
62%
33%
34%
Were you anxious about the transition between home care and the hospital?
FRAMEWORK TO HELP ORGANIZE THINKING
K. Carman et al (2013) A Multidimensional Framework for Patient and Family Engagement in Health and Health Care. Health Affairs. 32: 223-231.
Doyle C et al (2013) A Systematic Review of Evidence on the Links Between Patient Experience and Clinical Safety and Effectiveness. BMJ Open: 3:e001570
A Multidimensional Framework For Patient AndFamily Engagement In Health And Health Care (Carman 2013)
Continuum of engagement
Levels of Engagement
Consultation
Involvement
Partnership and
Shared leadership
Direct Care
Patients receive Information
about a diagnosis
Patients are
asked about their preferences in treatment plan
Treatment decisions are made based on
patients' preferences, medical evidence,
and clinical judgment
Organizational
design and governance
Organization
surveys patients about their
care experiences
Hospital involves patients as advisers or
advisory council members
Patients co-lead hospital safety
and quality improvement committees
Policy making
Public agency
conducts focus groups with patients
to ask opinions
about a health care issue
Patients' recommendations
about research priorities are used by public agency to make funding
decisions
Patients have equal representation on agency committee
that makes decisions about how to
allocate resources to health programs
Program Examples – Cleveland Clinic Care Enhancement Program for Lung Transplant Pts
(Carman 2013)
• Reduced length of stay by 1.54 days
• 6% decrease in case costs
• 28% improvement in patient satisfaction with clinicians’ communication
• 3% improvement in 30-day survival
Program Examples – Theda Care - Organizing Care Around the Patient at Point of Admission
• 10% reduction in length of stay
• Patient satisfaction scores of 5/5 went from 68% to 95%
• 25% reduction in direct and indirect costs of inpatient care
• Improved care protocol compliance
Others…
• Cincinnati Children’s
• Intermountain Health
• Virginia Mason Health System
• Gesinger
• Denver Health
Systematic Review Supports Case Examples (Doyle 2013)
• Systematic review looking at inpatient hospital care and primary care settings.
• Focused on wide range of demographic and age groups.
• Total of 55 studies met inclusion criteria
• Variety of measures including mortality, physical symptoms, length of stay, adherence to treatment, patient satisfaction, self rated and objectively measured health outcomes.
Review Conclusions
• Data display that patient experience is positively associated with clinical effectiveness and patient safety, and support the case for the inclusion of patient experience as one of the central pillars of quality in healthcare. It supports the argument that dimensions of quality should be looked at as a group and not in isolation. Clinicians should resist sidelining patient experience as too subjective or mood-oriented, divorced from the ‘real’ clinical work of measuring safety and effectiveness.
IMPLICATIONS FOR SYSTEM DESIGN?
How Providers Would be Educated
LESS EMPHASIS MORE EMPHASIS
Individual Roles Teamwork
Exotic Diseases Chronic Diseases
IQ Emotional Intelligence
Compartmentalized Diseases Holistic Care
Medical Miracles Aging Well
How the System Would Communicate
CURRENT FUTURE
Short & Frequent Visits Longer & Fewer Visits
In-person Is Default Multi-Mode
See the Doctor See Most Appropriate
Parallel & Unsynchronized Streamlined & Coord.
Talk Much, Listen Little Listen First, Then Talk
How the System Would Define Performance
CURRENT FUTURE
% of Pop. Screened % of Needs Addressed
Low Wait Times Avoided Interventions
Access to Specialists Primary Care Reduces Referrals
Quality of Technology Quality of Communication
System-Defined Outcomes System & Patient-Defined Outcomes
How the System Would Define Productivity
CURRENT FUTURE
How Much Is Done Impact of What Is Done
Needs Met Needs Prevented
Inputs:Outputs Inputs:Outcomes
High Quality Technical Care Effective Self-Mgmt
System-Defined Measures System & Patient Defined Measures
How the System Would Value Time
CURRENT FUTURE
Patient/Family Time Not Important Patient/Family Time of Equal Importance
Travel Time Is Pt`s Problem Travel Time a Burden to Avoid
Non-Direct Care Time Is Overhead Learning Time Is Essential
Schedules Months in Advance Schedules Open and Flexible
Elements of a “good” patient experience(Adapted from US IOM (2001), Shaller (2007), Lewis (2009), Dagnone (2009)
• Clear, consistent, reliable communication and exchange of information: patients and caregivers understand next steps, feel listened to, and have access to needed information
• Coordinated and connected care: patients and caregivers are connected to the appropriate professional or service and are confident that their providers are collaborating
• Comprehensive care: patients and caregivers feel their needs are being met – not just some needs, some of the time
Elements of a “good” patient experience(Adapted from US IOM (2001), Shaller (2007), Lewis (2009), Dagnone (2009)
• Engaged in care: patients and caregivers are active participants in decision making about their care and share authority
• Respectful, empathetic and considerate care: patients and caregivers feel their time and perspectives are respected, they are given time to ask questions, and they are treated with dignity and respect
• Timely and convenient care: patients and caregivers receive support they need in a timely way, in a way that is convenient for them