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.

67%

65%

64%

63%

59%

59%

20%

20%

21%

18%

19%

16%

4%

4%

6%

5%

9%

6%

4%

6%

5%

8%

10%

6%

4%

6% 7%

Strongly agree Somewhat agree Neither agree nor disagree Somewhat disagree Strongly disagree Don't know

Experiencing Anxiety

Were you anxious about the transition between your family doctor/primary care physician and the medical specialist or outpatient specialty service?

Yes35%

No64%

The medical specialist or outpa-tient specialty service staff

Your family doctor/primary care physician and the hospital?

70%

67%

30%

33%

Yes No

74%

70%

23%

29%

Were you able to express these anxieties to….?

Did they help to relieve your anxiety?

Primary Care to Hospital

The hospital staff was up to date regarding the medica-tions I was taking.

All my questions were answered.

The hospital staff was informed and up to date about my health care needs.

My family doctor/primary care physician and the hospital staff worked together as a team to meet my needs.

I felt cared for by my family doctor/primary care physician as I was prepared to be admitted to the

hospital.

65%

62%

62%

61%

60%

17%

20%

20%

21%

19%

8%

8%

8%

7%

7%

7%

7%

7%

5%

7%

Strongly agree Somewhat agree Somewhat disagree Strongly disagree

When you left the hospital, did the hospital make arrangements or make sure you had follow-up visits with a doctor or other health care professionals?

Did you receive a phone call from the hospital after returning home to confirm whether you had any problems with instructions or accessing services?

58%

12%

40%

82%

No Don't Know

Hospital Discharge

PatHospital Discharge

86% 88% 89% 86% 86% 84% 82%

71% 71% 68%

48% 47% 46%

65%

Transition to Home Plan No Transition to Home Plan

Differences Between Patients and Caregivers

89%92% 91%

87%

78% 78%81%

75%

Patient Caregiver

Hospital to Home with Home Care

After returning home from the hospital I received all the home care I needed to manage at home.

My home care service providers were informed and up to date about my health care needs after returning home.

My home care case manager was informed and up to date about my health care needs after returning home.

My home care case manager worked closely with hospital staff to ensure I had the services I needed at home.

My home care case manager worked closely with hospital staff to coordinate my return home.

67%

60%

58%

48%

42%

16%

19%

18%

12%

15%

10%

7%

8%

15%

15%

7%

6%

6%

8%

5%

8%

12%

10%

8%

10%

Strongly agree Somewhat agree Neither agree nor disagree Somewhat disagree Strongly disagreeDon't know

Your home care health pro-fessionals?

The hospital staff?

70%

63%

30%

33%

Yes NoDon't Know

PExperiencing Anxiety

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

ENGAGEMENT IS NOT NICE.IT IS NECESSARY.