an integration journey: what does research say? what do patients and their caregivers say?

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An Integration Journey: What Does Research Say? What Do Patients and Their Caregivers Say? Cathy Fooks President and CEO The Change Foundation April 20, 2009

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An Integration Journey: What Does Research Say? What Do Patients and Their Caregivers Say?. Cathy Fooks President and CEO The Change Foundation April 20, 2009. Presentation Outline. Jurisdictional review of integration efforts internationally and in Canada - PowerPoint PPT Presentation

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Page 1: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

An Integration Journey: What Does Research Say? What Do Patients and Their

Caregivers Say?

Cathy Fooks

President and CEO

The Change Foundation

April 20, 2009

Page 2: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Presentation Outline

• Jurisdictional review of integration efforts internationally and in Canada

• Summarize common elements and compare to Ontario’s efforts

• Highlight Puzzlemaker Report – views of patients and caregivers – and video

Page 3: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Jurisdictional Review

• Managed care in the US• NHS (four different reforms)• Regional health boards/coordinated care in Australia• District health boards in New Zealand• Local health authorities in The Netherlands• Six health reforms in Germany• Regional health authorities in Canada

Page 4: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Elements

• At least 11 elements were identified as success factors in all jurisdictions

• One element that was not successfully implemented in all jurisdictions but was referenced by all as important (whether or not they achieved it)

Page 5: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 1 - Comprehensiveness

• Comprehensiveness of services across the continuum despite multiple points of access for specific patient populations

• Cited as first principle by all

• Includes services from primary care through tertiary and back into the community and in some locations includes linkage to social care organizations

• Some, but not all, include population health focus

Page 6: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Comprehensiveness

• Under the auspices of the LHINs:– Public hospitals (2007/08)– Mental health & addictions agencies (2008/09)– Community support service agencies (2008/09)– CHCs (2008/09)– LTC Homes (2008/09)– CCACs (2009/10)

Page 7: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Comprehensiveness

• Not under the auspices of the LHINs:– Physicians – Public health– Ambulance services– Labs– Provincial networks and priority programs

Page 8: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 2 – Patient Focus

• All cite the justification for integrated delivery is to meet patient need

• Leads to huge focus on internal process redesign within organizations but also across transition points

• Those with more of a population health focus stress the need to engage their communities in planning

• Size is referenced in the literature with a view that larger integrated systems have a more difficult time retaining a patient focus

Page 9: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Patient Focus• Not a lot of systematic information on this yet

• Satisfactions surveys in some sectors

• Can look at whether system is organized for easy patient access

• Can look at whether patients had enough information to make decisions

Page 10: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Patient Focus – % of People Reporting Wait of Six Days or More to see Doctor

Source: Commonwealth Fund, 2007

30

10

4

12

20

20

5

0 5 10 15 20 25 30 35

Canada

Aust

NZ

UK

US

Ger

Net

Page 11: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Patient Focus - % Reporting Doctor Explained Things in a Way They Could Understand

Source: Commonwealth Fund, 2007

75

79

80

71

70

71

71

64 66 68 70 72 74 76 78 80 82

Canada

Aust

NZ

UK

US

Germany

Neth

Page 12: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Patient Focus - Patient Care Outside of Usual Office Hours in OntarioSource: National Physician Survey, 2004

% Answering Yes:

51.3% have physician available for patient care during non office hours

19.7% provide telephone advice by a physician associated with the practice

Page 13: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 3 - Geographic Rostering

• Geographic coverage with patient rostering with or without charge back

• Size is again referenced although from the opposite perspective – that is, larger numbers of clients are thought to create a more efficient integrated delivery system (generally thought to be about 1,000,000 minimum)

• Much harder to get volumes in the Canadian context with our geography – density becomes important

Page 14: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Geographic Rostering

• LHIN boundaries are geographic

• Some rostering at the primary care level (not related to LHINs)

Page 15: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

% Support by Group Requiring Patients to Register with One Primary Health Care Provider, Canada

Source, Health Care in Canada, 2006

8

11

5

7

4

6

13

9

2

10

22

26

13

13

16

33

31

37

29

36

26

19

36

49

34

0 10 20 30 40 50 60

Public

Doctors

Pharamcists

Nurses

Managers

Strongly Oppose Somewhat Oppose Neutral Somewhat Support Strongly Support

Page 16: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 4 - Interprofessional Teams

• Development of interprofessional teams (assumes clinicians are in the tent either as employees or through contract) as best use of resources

• A lot of barriers are cited particularly around alignment of financial incentives

• Literature stresses the need for role clarity, an understanding of the decision authority for patient care (hierarchical or shared)

• If not clear, can result in much slower care processes and can inhibit real integration

Page 17: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Interprofessional Teams - % Support by Group Requiring Health Professionals to Work in Teams

Source: Health Care in Canada, 2006

2

13

2

7

1

1

3

17

33

16

11

3

37

29

29

29

33

39

18

54

59

61

0 10 20 30 40 50 60 70

Public

Doctors

Pharmacists

Nurses

Managers

Strongly Oppose Somewhat Oppose Neutral Somewhat Support Strongly Support

Page 18: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 5 – Standardized Care

• Care in an integrated system ideally can be standardized to support a quality agenda

• Use and acceptance of provider-developed, evidence-based clinical care guidelines and protocols are cited as important

• Also links to the facilitation of interprofessional teams, as all team members are following the same protocol

Page 19: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Standardized Care – Usage of Standardized Protocols, Hospital Group Average

Source: Hospital Report, Acute Care, 2007

45.8

40.6

38.1

26

0 5 10 15 20 25 30 35 40 45 50

Teaching

Community

Provincial

Small

Page 20: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Standardized Care – Usage of Standardized Protocols, Hospital Group Range

Teaching: 13.9% – 81.1%

Community: 1.8% – 69.9%

Small: 0.0% – 74.1%

Page 21: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 6 - Measurement

• Performance measurement focused on:– Process of integration– System, provider and patient outcomes

• Can start as an accountability approach but usually develops quickly into a quality focus

Page 22: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 6 - Measurement

• Literature contains a lot of work on indicator development but general conclusion that there is a “scarcity of literature relating to the performance of integrated health systems as whole”

• May be related to definitional difficulties, number of players involved, diversity of goals, capacity to attribute effects

Page 23: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

MeasurementCurrent Published • CCO provider survey specific to integrated cancer services• Hospitals reporting some data related to transitions (eg ALC)

Planned Published• Integration indicators in accountability agreements• Ontario Health Quality Council populating high performing system

framework – integration is one component

Developing• LHINs developing series of indicators• JPPC was developing indicators for home care

Page 24: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 7- IT

• Heavy investment in information technology, information management and communication mechanisms

• Especially key when providers are not co-located• For quality, efficiency and productivity reasons• System-wide and provider-specific information

systems that relate to each other• Underpins most of the other elements • Absence cited as huge barrier

Page 25: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

IT – Hospitals Using Clinical Information Technology, Hospital Group Average

Hospital Report, Acute Care, 2007

79

62

59

40

0 10 20 30 40 50 60 70 80 90

Teaching

Community

Provincial

Small

Page 26: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Teaching: 63.6% - 98.3%

Community: 21.8% – 94.8%

Small: 9.1% - 70.3%

IT – Hospitals Using Clinical Information Technology, Hospital Group Range

Page 27: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Use of IT in Main Patient Care Setting, OntarioSource: National Physician Survey, 2007

% Indicating they have:

Electronic health records: 31.1%

Electronic scheduling 50.7%

Electronic reminder for pt care 14.0%

Electronic interface to external pharm 4.3%

Electronic interface to lab/diag imag 26.4%

Electronic interface to share pt info 23.6%

Electronic warning for adverse drugs 13.6%

Page 28: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 8 - Culture

• Cohesive organizational culture with strong leadership and a shared vision of integration

• Much harder to do under virtual or horizontal integration

• Vertical integration also has its challenges but is more likely to change culture

Page 29: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Culture

???

Page 30: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 9 - Leadership

• Creating supportive environment, collegial culture, resolving conflicts requires a sophisticated leader and leadership vision

• Capacity to assess effectiveness and change course if required

Page 31: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Leadership

• Probably most telling element is that all others made refinements after a period of time (including Canadian RHAs)

• Changed number of regions, renegotiated roles with province/state, established provincial or national health authorities to deal with high end specialty care

• Will we?

Page 32: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 10 - Governance

• Strong governance with decision making authority• Whatever the mechanisms, the model must promote

coordination, align financial incentives, share risk and have clear accountabilities

• Seasoned board members and experienced management staff were cited as critical to success

• Hindrances cited include poorly designed structure, competitive system of governance, or too many management levels

Page 33: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Governance

• LHIN Boards• Local Boards• MOHLTC

• Agreement between MOHLTC and LHINs• Agreements between LHINs and local Boards • Language of coordination and shared risk is in there

Page 34: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Governance

Who does:• Goal setting• Evidence based measurement and monitoring• Allocation

• Everyone seems to have a role to play?

• Where is final authority?

Page 35: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Common Element 11 - Funding

• Population based funding formula applied equitably with programmatic funding dedicated to specific services

• The mechanisms for this vary greatly but all start with population based formula

• Jurisdictions that did not align funding models found they did not promote teamwork, time spent on integrative activities or health promotion

• Literature is unclear on best formula for integration purposes so at minimum age and gender have been used

Page 36: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Funding• LHINs and providers are supposed to have a balanced budget

• LHIN to provide providers with funding (currently based on historical allocations, service volumes, operating plans – not population based)

• If shortfall, parties will negotiate and revise requirements

• Accountability agreement has process for recovery of funding by LHINs subject to appeal

• Is this aligned with non-LHIN activity and provincial programs?

Page 37: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Not Quite So Common Element 12 – Involvement of Physicians

• Two aspects– Engagement of clinical leadership in planning, design, and

sometimes leading integration efforts. Much written about failure to do this and subsequent lack of integration success

– Ways to integrate primary care providers if they are the initial point of care (often used as an integration measure)

• Those that weren’t successful on this cite it as very important

Page 38: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Ontario 2009

• Continuum will be difficult while chunks of services are not aligned with LHINs

• Will need to focus on transition points across if patient focus is to be honoured

• Geographic boundaries are in place but hard to see how patients will be rostered without a linkage to primary care

• Increased use of interprofessional teams within facilities and in the primary care setting – can we link them?

Page 39: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Ontario 2009

• Increasing usage of standardized protocols – more work to do but going in the right direction

• A lot of discussion about measurement and a lot of indicators to be reported – not a lot of actual measures of integration at present

• Pockets of very exciting work on the IT front at the provider level – how to achieve system level linkage?

• In future, further work to clarify governance and funding arrangements will likely be required.

Page 40: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Who is the Puzzle Maker?

Patient and Caregiver Perspectives on Navigating Health Services in Ontario

Page 41: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Research on Patient Perspective

Three separate projects:

1) Second literature review on patient and families views on navigating the system

- systematic review at University of Calgary

- limited to empirical studies of expectations and experiences of integrated health care since 1997

- 53 studies were included, 12 of which were Canadian

Page 42: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Research on Patient Perspective

2) General population survey about information flow and communication across transition points

- 1015 Ontarians aged 18 and over at the end of April 2008

- asked about information flow and communication; provider access to information; coordination of care; whether the health system values their time

Page 43: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Research on Patient Perspective

3) Ten focus groups with regular users of the health care system (minimum of six interactions in last 12 months with different providers) and caregivers

- divided between patients and caregivers

- caregivers had to participate in appointments

Page 44: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

What Did We Find?

In general:

• Patients have reasonable expectations• Strongly support their health care providers and

professionals• Understand the government’s concern about ever

increasing resources directed at health care

BUT:• They see where things break down and can identify clearly

where “things don’t make sense”

Page 45: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Four Common Themes

1) Navigating the System – is anybody joining the dots?

2) Dealing with Repetition, Redundancy and Delay – could it be a bit more logical?

3) Worrying about Communication – is anybody listening?

4) Getting Lost in the Transition – who is the puzzle maker?

Page 46: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

System Navigation

• 54% of people surveyed reported they were not confident that there was a single, lead person in charge of coordinating their health care services (S)

• Patients and families report that as they move across services, they are “left to make their own way through the continuum without the skills, support or confidence to do so” - this was particularly true for parents with special needs children and families dealing with chronic, debilitating illness (LR)

Page 47: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

System Navigation

• Patients report that they understand they must shoulder some responsibility for their care but are looking for a partnership (FG)

• Patients receiving care in clinics featuring multi disciplinary teams reported higher levels of satisfaction and less difficulty navigating services (LR and FG)

Page 48: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Tanya from Kingston

“The difficulty was the coordination of care once she got home from hospital…There just doesn’t seem to be a good flow of information between specialists. And so it’s a bit difficult to navigate. I thought it would be helpful to have someone sort of helping us with that.”

Page 49: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Repetition, Redundancy, Delay

• 41% of those surveyed reported they do not feel the health care system values their time (not seen at time of appointment, allowed only one issue to be discussed at each appointment, short notice appointment during work hours) (S)

• Patients report:– having to convey the same information repeatedly– being sent for duplicate tests (first results were not

available or too much time had passed between test date and appointment)

Page 50: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Repetition, Redundancy, Delay

Patients report:

– appointments or procedures being cancelled after patient arrived onsite

– rebooking an appointment because provider did not have adequate information at the time of the appointment (LR and FG)

Page 51: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Keith in Toronto

“With my Dad, every time I’ve gone, and he’s been to various places and I’ve been there, we have the big file. Now if I wasn’t educated and he wasn’t organized…

Every time you have to fill in the forms again.”

Page 52: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Communication

• Most common area of concern from all three sources

1) Information at point of services- 41% of those surveyed reported they did not think

their health care practitioner had access to all information, tests and records related to their health (S)

- Misplaced records (LR)- Incomplete information sent (LR)- Patients deliver their own test results (FG)

Page 53: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Communication

2) Clarity About Next Steps in Treatment - 30% of people surveyed reported that they sometimes received instruction about symptoms to watch for. 35% reported they occasionally, seldom or never received such instructions (S)

- 27% of people reported they sometimes received instructions about where to seek further care if needed. 30% reported they occasionally, seldom or never received such instructions (S)

Page 54: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Communication

3) Communication Between Health Care Providers

- perceptions of coordination are directly linked to perceptions of the extent of communication between providers (LR)

- numerous instances of a provider not knowing a patient had been seen elsewhere, not having results of the episode elsewhere (FG)

Page 55: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Transition Points

• Emphasis in both the literature review and the focus groups that the problems (navigation, repetition and communication) are acute at points of transition

• Relates to other work we are doing - Flo Collaborative and Transitions project with OACCAC

Page 56: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Joy in Kingston

“People are leaving the hospital and then they’re kind of on their own. When they’re out there’s home care, but only for so long and then…it’s unloaded deeply on families. Honestly, if you don’t have daughters or sons close by, you are on your own.”

Page 57: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Carmen in Toronto

“They asked my father ‘Is there someone at home who could take care of you? And he said, ‘Yes, my wife.’ But my mother is blind, she has mobility issues. I said, ‘He cannot come home under these circumstances.’ So they told me I was the primary caregiver.”

Page 58: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

Solutions?

Research and public agree:

• Speed up EHR implementation• Designate navigators or care coordinators across

continuum• Increase use of multidisciplinary teams• Better support for caregivers• Better connect primary care practitioners to rest of system• Undertake QI process mapping at transitions• Coordinate/integrate care maps across providers

Page 59: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?

What Next for Ontario?

• Improve local communication?

• Develop regional networks and collaborative governance?

• Supportive provincial policy, regulation and funding?

• Focus on measurement of integration from a patient perspective?

Page 60: An Integration Journey: What Does Research Say?  What Do Patients and Their Caregivers Say?