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  1. 1. Peeling Back the Onion: What are Patientsand Their Caregivers Actually Saying AboutTheir Health Care Experience and WhatDoes it Mean for the Delivery of Care?Cathy FooksThe Change FoundationApril 18, 2013SMH Clinical & Population Research Rounds
  2. 2. The Change Foundation????• Charitable Foundation set up in 1995 by the OntarioHospital Association• $55 million endowment – spend the investment incomebased on Board approved strategy• Currently focused on improving the patient and caregiverexperience 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)
  3. 3. Focus for Today1) Regional Consultations – LOUD AND CLEAR2) Current Experiences - PANORAMA3) Experience Survey – Cobourg/PATH4) Framework to Help Clarify Discussions5) Evidence of Impac6) Implications for System Design
  4. 4. LOUD AND CLEARSeniors and Caregivers on NavigatingOntario’s Health Care System
  5. 5. Six Regional Consultations• Locations:Ottawa, Dryden, Timmins, Peterborough, London, Torontofor 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
  6. 6. Online Story Book
  7. 7. The numbers on navigating healthcare transitionsN=95
  8. 8. Some of the narrative…“If someone had just sat down with us to explainwhat was next in our care, it would have made ahuge difference.”I‟ve had four discharge experiences from hospitalback to nursing homes. The problem is that noone seems to understand the system. There is nosystem map to explain how it works. Peopleexplained parts of the system but not the overallsystem.”
  9. 9. Some of the narrative…“When I called the hospital to explain the problemswith the transition home, all I got was „sorry youfeel this way about your dad‟s discharge, but hewas ready to go‟ Why was there no home safetyassessment prior to getting home and why wasthere no clear information about what was goingto happen that my mom could understand?”“I‟ve never been asked as a caregiver, „what‟sconvenient for you?‟ or „how would this work inyour family?‟ Instead its „this is what we aregoing to do for you.‟
  10. 10. Pointing out the positives…• Huge support for team based care and role of nursepractitioners who have time to spend with patients.• Recognition that once a diagnosis was made, supportwas more clear – in particular cancer services andAlzheimer’s organizations were referenced.• Distinctions made between individual health careworkers and the organizations within which theyworked.
  11. 11. Overall themes…• Primary care - disorganized, not connected to rest of thesystem• Connecting the dots – hard to do and not a lot of help• Communication – variable, personality driven rather thansystem driven• Inclusion – certain disregard for family members and theircontributions• Equity – despite above, recognition that those without familywere even less supported
  12. 12. PANORAMAA Panel of Ontario ResidentsExchanging Views, Experiences
  13. 13. 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, FortFrances, Hanover, Kingston, Leamingtron, Markstay, Mississuaga, Niagara-on-the-Lake, NorthBay, Oakville, Ottawa, Peterborough, RichmondHill, 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 andpatients with chronic disease
  14. 14. System Usage in the Past 24 months30%70%52%44%11%22%30%0% 20% 40% 60% 80%FHTEDGP soloGP groupNP clinicWalk in clinicTelehealth
  15. 15. Hospital Related Transitions in Past 24 months38%42%27%4%12%0% 10% 20% 30% 40% 50%ED to HospHosp to HomeHosp to Home with Home CareHosp to LTCHosp to Rehab
  16. 16. HOW DO THEY DESCRIBE THEHEALTHCARE SYSTEM?
  17. 17. How do they describe the health care system?• A safe with a patient trying to crack it open – toshow limited patient access to their own health careinformation• A question mark around the word diagnostics – toreflect doubt while waiting for, or interpreting, testresults• A hamster running on a wheel – to show thechallenges of accessing uncoordinated services
  18. 18. How do they describe the health care system?• A balanced scale – to show the two sidedexperience of good care/poor care and that the levelof service is not the same across the board• A big doctor with his arms around his chest andbehind him a little person – to show the patientfeeling they are without authority or rights
  19. 19. HOW DO THEY VISUALIZE THESYSTEM?
  20. 20. COMMUNITY SURVEY:CURRENT EXPERIENCE INNORTHUMBERLAND(HOME OF OUR PATH PROJECT)
  21. 21. Methodology• Telephone survey was administered by Ipsosin West Northumberland• Patients: 18 years of age or older, having one or more long-term healthconditions & 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 careneeds.• 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.
  22. 22. Patientand Caregiver ProfileCaregiver – Profile69%31%PatientCaregiver41%59%Male Female27%57%11%3% 3%Live on my own Live with myspouse and/orchildren in myhomeLive with familymembers or othersin their homeLive in acommunity-typesetting like aretirement homeLive in a long-termcare/nursing home47%22% 19%Less than$45,000$45,000 to lessthan $75,000Over $75,000
  23. 23. Frequency of Transition Experiences85%56%53%30%17%2% 2%Lab/Diagnostics inSupport ofTransitionsBetween PrimaryCare and SpecialtyCareBetween Homeand HospitalBetween PrimaryCare and HospitalBetween HomeCare and HospitalBetween Long-term Care andHospitalFirst TimeTransitions toLong-term CareSmallBases
  24. 24. Patient anPrimary and Speciality CareCaregiver – Prire67%65%64%63%59%59%20%20%21%18%19%16%4%6%4%4%6%5%9%6%4%6%5%8%10%6%7%I felt cared for by the medical specialist or outpatientspecialty service as soon as I arrived.The medical specialist or outpatient specialty servicestaff was informed and up to date about my health careneeds.All my questions were answered.The medical specialist or outpatient specialty servicestaff was up to date regarding the medications I wastaking.It was easy for me to get to the medical specialist oroutpatient specialty service office.When I went back to see my family doctor/primary carephysician, they were informed and up-to-date about thecare I received from specialist doctors.Strongly agree Somewhat agree Neither agree nor disagreeSomewhat disagree Strongly disagree Dont know
  25. 25. Experiencing AnxietyWere you anxious about the transitionbetween your family doctor/primarycare physician and the medicalspecialist or outpatient specialtyservice?Yes35%No64%70%67%30%33%The medical specialist oroutpatient specialty servicestaffYour family doctor/primarycare physician and thehospital?Yes74%70%23%29%Were you able toexpress these anxietiesto….?Did they help to relieveyour anxiety?
  26. 26. Primary Care to Hospital65%62%62%61%60%17%20%20%21%19%8%8%8%7%7%7%7%7%5%7%The hospital staff was up to date regarding themedications I was taking.All my questions were answered.The hospital staff was informed and up to date aboutmy health care needs.My family doctor/primary care physician and thehospital staff worked together as a team to meet myneeds.I felt cared for by my family doctor/primary carephysician as I was prepared to be admitted to thehospital.Strongly agree Somewhat agree Somewhat disagree Strongly disagree
  27. 27. 58%12%40%82%When you left the hospital, did the hospitalmake arrangements or make sure you hadfollow-up visits with a doctor or other health careprofessionals?Did you receive a phone call from the hospitalafter returning home to confirm whether you hadany problems with instructions or accessingservices?Yes NoHospital Discharge
  28. 28. PatHospital Discharge86% 88% 89%86% 86% 84% 82%71% 71%68%48% 47% 46%65%When I left thehospital, I clearlyunderstood thewarning signs andsymptoms I shouldwatch for.When I left thehospital, I wasconfident I couldactually do the things Ineeded to do to takecare of my health.When I left thehospital, I had all theinformation needed tobe able to take care ofmyself.My family or homesituation was takeninto account whenplanning the hospitaldischarge.The hospital staff tookmy preferences andthose of my family orcaregiver into accountin deciding where myhealth care needswould be met afterbeing discharged fromthe hospital.Hospital staff talkedwith me aboutwhether I would havethe help I needed afterbeing discharged fromthe hospital.Involved in DischargeDecisionTransition to Home Plan No Transition to Home Plan
  29. 29. Differences Between Patients and Caregivers89%92% 91%87%78% 78%81%75%My family doctor/primarycare physician clearlyexplained why I was beingadmitted to the hospital.The admission processwas well organized.I was able to participate inthis decision to the extentthat I wanted to.All my questions wereanswered.Patient Caregiver
  30. 30. Hospital to Home with Home Care67%60%58%48%42%16%19%18%12%15%8%10%7%6%6%8%10%7%8%15%15%5%8%12%10%After returning home from the hospital I received all the homecare I needed to manage at home.My home care service providers were informed and up todate about my health care needs after returning home.My home care case manager was informed and up to dateabout my health care needs after returning home.My home care case manager worked closely with hospitalstaff to ensure I had the services I needed at home.My home care case manager worked closely with hospitalstaff to coordinate my return home.Strongly agree Somewhat agree Neither agree nor disagreeSomewhat disagree Strongly disagree Dont know
  31. 31. 70%63%30%33%Your home care healthprofessionals?The hospital staff?YesNoPExperiencing AnxietyWere you anxious about thetransition between your homeand the hospital?Yes28%No70%Were you able toexpress these anxietiesto….?Did they help to relieveyour anxiety?Yes25%No72%67%62%33%34%Were you anxious about thetransition between home care andthe hospital?
  32. 32. FRAMEWORK TO HELPORGANIZE THINKINGK. Carman et al (2013) A Multidimensional Framework for Patient andFamily Engagement in Health and Health Care. Health Affairs. 32: 223-231.Doyle C et al (2013) A Systematic Review of Evidence on the LinksBetween Patient Experience and Clinical Safety and Effectiveness. BMJOpen: 3:e001570
  33. 33. A Multidimensional Framework For Patient AndFamily Engagement In Health And Health Care (Carman 2013)Continuum of engagementLevels ofEngagementConsultation Involvement Partnership andShared leadershipDirect CarePatients receiveInformationabout adiagnosisPatients areasked about theirpreferences intreatment planTreatment decisionsare made based onpatients preferences,medical evidence,and clinicaljudgmentOrganizationaldesign andgovernanceOrganizationsurveys patientsabout theircare experiencesHospital involvespatients asadvisers oradvisory councilmembersPatients co-leadhospital safetyand qualityimprovementcommitteesPolicy makingPublic agencyconductsfocus groupswith patientsto askopinionsabout a healthcare issuePatientsrecommendationsabout researchpriorities are usedby public agencyto make fundingdecisionsPatients have equalrepresentation onagency committeethat makes decisionsabout how toallocate resources tohealth programs
  34. 34. Program Examples – Cleveland Clinic CareEnhancement Program for Lung TransplantPts(Carman 2013)• Reduced length of stay by 1.54 days• 6% decrease in case costs• 28% improvement in patient satisfaction withclinicians’ communication• 3% improvement in 30-day survival
  35. 35. Program Examples – Theda Care - Organizing CareAround 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
  36. 36. Others…• Cincinnati Children’s• Intermountain Health• Virginia MasonHealth System• Gesinger• Denver Health
  37. 37. Systematic Review Supports Case Examples(Doyle 2013)• Systematic review looking at inpatient hospital care andprimary care settings.• Focused on wide range of demographic and age groups.• Total of 55 studies met inclusion criteria• Variety of measures including mortality, physicalsymptoms, length of stay, adherence to treatment, patientsatisfaction, self rated and objectively measured healthoutcomes.
  38. 38. Review Conclusions• Data display that patient experience is positivelyassociated with clinical effectiveness and patientsafety, and support the case for the inclusion ofpatient experience as one of the central pillars ofquality in healthcare. It supports the argument thatdimensions of quality should be looked at as a groupand not in isolation. Clinicians should resistsidelining patient experience as too subjective ormood-oriented, divorced from the ‘real’ clinical workof measuring safety and effectiveness.
  39. 39. IMPLICATIONS FOR SYSTEMDESIGN?
  40. 40. How Providers Would be EducatedLESS EMPHASIS MORE EMPHASISIndividual Roles TeamworkExotic Diseases Chronic DiseasesIQ Emotional IntelligenceCompartmentalized Diseases Holistic CareMedical Miracles Aging Well
  41. 41. How the System Would CommunicateCURRENT FUTUREShort & Frequent Visits Longer & Fewer VisitsIn-person Is Default Multi-ModeSee the Doctor See Most AppropriateParallel & Unsynchronized Streamlined &Coord.Talk Much, Listen Little Listen First, Then Talk
  42. 42. How the System Would Define PerformanceCURRENT FUTURE% of Pop. Screened % of Needs AddressedLow Wait Times Avoided InterventionsAccess to Specialists Primary Care ReducesReferralsQuality of Technology Quality of CommunicationSystem-Defined Outcomes System & Patient-DefinedOutcomes
  43. 43. How the System Would Define ProductivityCURRENT FUTUREHow Much Is Done Impact of What Is DoneNeeds Met Needs PreventedInputs:OutputsInputs:OutcomesHigh Quality Technical Care Effective Self-MgmtSystem-Defined Measures System & Patient DefinedMeasures
  44. 44. How the System Would Value TimeCURRENT FUTUREPatient/Family Time Not Important Patient/Family Time of EqualImportanceTravel Time Is Pt`s Problem Travel Time a Burden to AvoidNon-Direct Care Time Is Overhead Learning Time Is EssentialSchedules Months in Advance Schedules Open and Flexible
  45. 45. Elements of a “good” patient experience(Adapted from US IOM (2001), Shaller (2007), Lewis (2009), Dagnone (2009)• Clear, consistent, reliable communication and exchange ofinformation: patients and caregivers understand nextsteps, feel listened to, and have access to needed information• Coordinated and connected care: patients and caregivers areconnected to the appropriate professional or service and areconfident that their providers are collaborating• Comprehensive care: patients and caregivers feel their needsare being met – not just some needs, some of the time
  46. 46. Elements of a “good” patient experience(Adapted from US IOM (2001), Shaller (2007), Lewis (2009), Dagnone (2009)• Engaged in care: patients and caregivers are activeparticipants in decision making about their care and shareauthority• Respectful, empathetic and considerate care: patients andcaregivers feel their time and perspectives are respected, theyare given time to ask questions, and they are treated with dignityand respect• Timely and convenient care: patients and caregivers receivesupport they need in a timely way, in a way that is convenientfor them
  47. 47. ENGAGEMENT IS NOT NICE.IT IS NECESSARY.

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