Why We Care About Home Care

1. Why We Care About Home Care • Presentation to the Ontario Home Care Association • 2009 Symposium • By • Cathy Fooks • President and CEO • The Change Foundation

2. Presentation Overview • Who is the Change Foundation and what do we do? • Why a Focus on Community Care? • What does our research tell us? • Future partnerships?

3. Who is the Change Foundation? • Charitable, public foundation established in 1995 by the Ontario Hospital Association • Board of Directors sets overall strategic directions and small management team to implement • $55 million endowment – we spend the investment income annually (depends on the markets!) • Recently established the Centre for Health Care Quality Improvement (CHQI) with $25 million from MOHLTC

4. What Do We Do? • Health policy think tank – thus tag line • Two areas of work: looking at delivery models for integrated care AND supporting quality improvement activities in community care • Combination of traditional policy research AND hands on, practical quality improvement redesign

5. Why A Focus on Community Care? • “ There is a growing body of literature internationally • and in Canada that indicates that home care can • be a cost-effective substitute for long term care • facility care and acute care within an integrated • system of care.” • Hollander et al, Healthcare Quarterly, 12(1), 2009

6. Why a Focus on Community Care? • Hugely important part of continuum of care for patients/clients BUT often ignored and under-resourced • Lots of evidence that citizens wish to receive care in their homes, not in institutions/facilities when appropriate • Not covered under Canada Health Act, thus no federal transfers, thus left to provincial coffers to fund or out of pocket

7. Per Capita Home Expenditures in Ontario(adjusted for inflation) Source: CIHI, 2007

8. Home Care % of Total Health Care Budget, OntarioSource: CIHI, 2007

9. Why a Focus on Community Care? • In 2005, approximately 774,000 people used home care services in Ontario • Population 65 and older more than doubles by 2031 • 2005 Ontario survey showed that 88% of those surveyed preferred home care as a place of care for themselves and 84% preferred for their loved ones • 58% of ALC days in Ontario because home care services aren’t available or services have not been finalized

10. What Does Our Research Tell Us? • Focus on integration – look at all services from the patient/client perspective • Puzzlemaker Report – Patient and Caregiving Perspectives in Navigating Ontario’s Health Care Services • Having Their Say, Choosing Their Way – voices at the transition points

11. Why a Focus on Integration? • Health care can be fragmented • Seams in between programs and sectors can look more like canyons • Authority can be dispersed - autonomy is more the norm – especially for health care professionals who are often independent practitioners

12. Why a Focus on Integration? • Variations in practice patterns can raise issues of quality • Everyone is working hard but whole is often less than the sum of the parts • Ontario has a legacy of provider silos – no one’s fault, the system has been designed and funded that way

13. Results of Lack of Integration? • Confusion among public, patients and providers – not sure who should be responsible • Care remains largely uncoordinated • System capacity is used inefficiently

14. Results of a Lack of Integration? • Quality issues surface • Complaints • Seems to be particularly difficult at points of transition from one service provider/professional to another

15. Research on Patient Perspective • Three separate projects: • 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

16. 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

17. 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

18. 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”

19. Four Common Themes • Navigating the System – is anybody joining the dots? • Dealing with Repetition, Redundancy and Delay – could it be a bit more logical? • Worrying about Communication – is anybody listening? • Getting Lost in the Transition – who is the puzzle maker?

20. 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)

21. 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)

22. 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.”

23. 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)

24. 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)

25. 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.”

26. 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)

27. 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)

28. 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)

29. 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 another project we are doing with CCACs

30. 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.”

31. 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.”

32. 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

33. Having Their Say, Choosing Their Way • Quality improvement project working with the South East CCAC and Trenton Memorial Hospital to improve the transition from hospital to “home” (defined as home care or LTC placement) • Process mapping with the staff – actually observing and mapping all the steps involved in discharge planning and placement • Interviews with patients/clients and their families

34. Having Their Say, Choosing Their Way • Basic focus on improving efficiency, length of time and communication • What can we stop doing? • What should we start doing? • What prevents change?

35. Having Their Say, Choosing Their Way • Population Studied • Average age: 81 • 73% female • 31% receiving home care prior to hospital admission • 40% LTC application completed prior to hospital admission • 47% living with a family member

36. Metrics: What Did We Find? • Total of 160 steps • 69 handling steps • 36 forms originated • Minimum of 4 family trips to hospital to meet staff • 15 points where delays occur • 5 staff involved

37. Metrics: What Did We Find? • 15 points of delay • Assessments filled out electronically but then printed and faxed or sent by courier • One part of the assessment changes and a whole new assessment is printed and sent without indication as to what has changed • Clients entered into a tracking tool five times

38. Patient/Client Voices • “I want accurate information that I can understand at the right time and place, including viable options, so my family and I can make the right decision for us. I want to feel confident that people care and to be treated with respect.” • “I don’t want to make a decision out of fear, inadequate care, or surprises.”

39. What Has Changed? • Local staff decided on the following: • Prebooked meetings with CCAC case manager • CCAC case manager meeting with high risk elderly in the ER • Elimination of approval steps for in-home authorizations • Adding personal support works in hospitals • Discontinue requirement for hospital case managers to seek management approval for authorizing personal support • Phase two in Toronto just completed

40. Future Partnerships • Working with Community Provider Steering Committee to develop a survey of providers to look at these issues (committee is supported through the OACCAC) • OHCA co-chairs the Committee • Planning to develop a quality improvement project focused on the CCAC – community provider interface