Leading Practices in Patient Engagement: Quality Improvement Plans and Beyond

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1 Leading Practices in Patient Engagement: Quality Improvement Plans and Beyond Sudha Kutty, Director Quality Improvement Strategies Susan Brien, Director Public Reporting Health Quality Ontario The provincial advisor on the quality of health care in Ontario

2 Objectives To share leading practices in patient engagement and experience as highlighted in the 2016/2017 QIPs To understand the challenges in understanding caregiver experience 1

3 Quality Matters

4 Patient Experience and Patient Reminder: Engagement in the QIPs The following health care organizations are required to submit Quality Improvement Plans to HQO annually on April 1: Hospitals CCACs Long term care homes Interprofessional Primary Care Organizations Organizations are required to engage with patients in the development of their QIPs and reflect this activity in the QIP Narrative Organizations are also encouraged to work on improving the patient experience (as a priority issue and indicator in the QIP workplan) As of Apri1 1, 2016 HQO received QIPs from 1042 organizations HQO is in the process of analyzing these QIPs Offering a high level overview of some of the findings related to patient engagement and patient experience 3


6 What is patient engagement? Patient centred care an overall philosophy and approach [to care] based on patient needs and preferences. Patient engagement how providers or healthcare organizations solicit patient needs and preferences to ensure they are delivering patient-centred care Patient experience how patients perceive and experience their care (hopefully patient-centred). (Fooks et al. The Patient Experience in Ontario 2020: What is possible? Healthcare Papers 14(4)) 5

7 Why engage patients? Patients and caregivers are an important source of insight and ideas for quality improvement efforts. Working with patients and caregivers to improve an organization s process has many benefits and is a way of ensuring that patients are full participants in decisions that affect them. (Source: Engaging with Patients and Caregivers about Patient Relations: A Guide for Hospitals) 6

8 100% 90% Comparison of Patient Engagement Methods across four sectors, QIPs % 70% 72% 60% 50% 45% 40% 30% 20% 10% 0% 21% 11% Advisory Councils or Forums 36% 14% 17% 13% Resident's compliments, complaints/relations process/critical incidents 30% 29% 7% 14% 20% Other Resident/family advisors meetings, focus groups or community meetings 0% 22% 15% Resident advisors on quality focused committees: this goes beyond the Council or Forum 22% 14% 14% 9% Residents/families involved in design of quality initiatives Hospitals Community Care Access Centre Long Term Care Homes Interprofessional Primary Care Organizations 7

9 Holland Bloorview: Shifting the Conversation (2105/2016 QIPs) Family Engagement Family Advisory Committee 1. Three separate focus groups with families from in/out patient settings and different populations 2. Families had opportunity to provide written feedback/recommendations if they were unable to partake in the focus group Senior Management Team 1. Authentic partnership with the FAC 2. Challenged the organization to do better and accept the recommendations from families Quality Committee of the Board 1. Equal decision making at the level of the Board for indicators, targets and executive compensation 3. Three separate sessions at the FAC facilitated activities to gather recommendations 3. Bridged conversation with Board of Trustees need to take risk 2. Support for advancing aggressive targets Family recommendations to be aggressive with targets and really focus on access Safety is a high priority and targets should be at the theoretical maximum Less is more (focus the work) 8

10 Patient engagement methods, CCAC QIPS 2015/2016 to 2016/ Patients compliments, complaints, Patient Relations process 0.00 Review of critical incidents Surveys Focus groups, town halls, community meetings Advisory council, forum 0.00 Patients on quality committees Patients/families involved in co design

11 A framework 10

12 Levels of engagement: Direct care- CCAC LEVELS OF ENGAGEMENT Consultation Involvement Partnership & 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 Examples: the Central East CCAC has begun to use patient stories to identify areas for potential QI. Always Events (South West CCAC) North Simcoe Muskoka CCAC -in-home falls safety checklist &webbased resource site 11

13 Key outcomes that matter IMPROVING PATIENT EXPERIENCE

14 Patient experience as a component of patient engagement Patient Experience: The patient s assessment of their care continuum, starting from the time they first connected in order to obtain care. That assessment is influenced by the processes, the physical settings and the relationships that develop with their care providers, as well as being shaped by their own expectations of the health care system. (HQO working definition, 2016) 13

15 How is patient experience measured in the QIPs? Hospital: Patient Satisfaction Rate the care and services you received.. Would you recommend this hospital to friends and family? CCAC: Patient Experience Give an overall rating of management of care Rate the care and services you received. Patient Satisfaction/Experience indicators Primary Care: Patient Experience Timely Access to Care Opportunity to ask questions Involvement in care decisions Enough time. LTC: Patient experience Having a voice. Not being afraid to speak up Recommend to friends/family.

16 CCAC Patient experience: what changes are being tried? Use health literacy approaches like self mgt, teachback Patient education Assign dedicated Care Coordinators to hospital units Involve patients in design of QI initiatives F/U on complaints and concerns Audit and feedback 0.0% 7.7% 15.4% 38.5% 38.5% 38.5% Staff education 61.5% 0.0% 20.0% 40.0% 60.0% 80.0% 100.0% 15

17 CCAC: What change ideas are being tried? Increase live answer response to queries Using data Correlate staff and patient survey responses Concurrent use of call centre to gather real time experience outcomes Use IVR surveys to get real time data about patients Change Ideas Changing delivery structure Establishing role clarity Realign neighborhood areas for PSWs to develop a meaningful connection to primary care Review and pilot a new program for patient preferences for scheduled and unscheduled care Re-establish patients relations role to improve management of complaints and risks Establish role clarity for patient team to improve continuity of care

18 Other ideas to improve patient experience Quality events > 200 [patients, caregivers, staff and community partners] Events (Central) Research (TC/HNNB) Developing a client/caregiver experience survey Research on engagement in home care; what works best? New roles (MH) New ways to engage patients (CE) Positions for Regional engagement coordinators Patient learning circles 17

19 Improving together A handful of CCACs referenced working with their Service Provider Organizations to improve patient experience: CW CCAC: Engage in joint CCAC-SPO initiatives to improve communication, collaboration and process effectiveness to enhance the overall patient experience. This will include socializing the fact that quality care coordination and service delivery have a direct impact on the NRCC Client and Caregiver Experience Evaluation (CCEE) survey results. The intent is to increase awareness, understanding, and engagement of front line staff to improve performance and thus enhance the patient experience 18

20 Something new Percentage of palliative / end of life patients who died in their preferred place of death 8/14 CCACs are collecting baseline on this indicator Change ideas primarily focussing on documentation Champlain CCAC: Design improvement initiative from analysis of VOICES (UK) survey results. Develop and implement pilot for combined services (Nursing, Personal Support, Allied Health) with same Service Provider Organization for palliative and end of life patients. Implement provincial coding process to update preferred place of death captured under "discharge disposition". Leverage gains from palliative care model to sustain improvements in palliative care. 19

21 Caregiver experience Excellent Care for All Act: Section 5. (1) Every health care organization shall carry out surveys, at least once every fiscal year, of persons who have received services from the health care organization in the past 12 months and of caregivers of those persons who had contact with the organization in connection with those services. The voice of the caregiver is noted in some QIPS For example: Champlain CCAC, in its efforts to reduce falls in long stay clients, is separately surveying caregivers, as well as patients, and staff to learn more about a technology solution to impact fall rates. 20


23 Nghi: Trying to do the right thing 22

24 Long-stay home care patients and their caregivers 97% of long-stay home care patients rely on an unpaid caregiver To supplement the care they receive from Ontario s publicly-funded home care system. Caregivers include family members, friends or neighbours 23

25 Background: Measuring Up 2015 Measuring Up 2015 described an increase in caregiver distress among caregivers of long-stay home care patients in Ontario 24

26 Objective To take a closer look at caregiver distress among longstay home care patients in Ontario Describe the change in characteristics of long-stay home care patients over time Describe caregiver distress among caregivers of long-stay home care patients according to various patient characteristics To incorporate the lived experience perspective on caregiver distress 25

27 Methods Indicator: Percentage of long-stay home care patients whose caregiver is unable to continue in caring activities or primary caregiver expresses feelings of distress, anger or depression Information from Resident Assessment Instrument Home Care (RAI- HC) assessments (provided by the Ontario Association of Community Care Access Centres and held at the University of Waterloo) Adult long-stay home care patients in Ontario (SRC 93, 94 and 47) Exclusions Took place in hospital Initial assessment Occurred within 60 days of admission to home care Missing or invalid value for admission date, assessment date or field identifying presence of a caregiver Another assessment in the quarter for the same patient Time period: 2009/ /14 Home care patient characteristics: age, dementia, behaviours, CPS, ADL, CHESS, MAPLe, patient-caregiver relationship, living arrangement, hours of unpaid care 26

28 Home care patients are older, and more frail Long-stay home care patients cared for by family members, friends or neighbours became collectively more cognitively impaired, more functionally disabled and sicker between 2009/10 and 2013/14. 27

29 Increasing cognitive impairment 28

30 Declining functional and physical abilities 29

31 Increasing health conditions 30

32 Key findings: unpaid caregivers The unpaid caregivers family members, friends and neighbours who helped look after long-stay patients were generally more distressed the older, more cognitively impaired, functionally disabled and frail the patients were. Nearly half (49.2%) of patients with Alzheimer s or other dementias had informal caregivers who were distressed. Patients who exhibited difficult behaviours associated with dementia, more than 60% had caregivers who were distressed Patients with moderately severe to very severe impairment in cognitive abilities, 54.5% had caregivers who were distressed. 31

33 Caregiver distress and patient cognition 32

34 Caregiver distress and functional and physical abilities 33

35 Carole Ann: Doing it on her own

36 Caregiver distress and health conditions 35

37 Objective: Caregiver Panel Explore topics that could not be captured through assessment data, learn more about caregivers, and explore why caregivers in Ontario may be distressed Process: 3-hr focus group, facilitated discussion 7 caregivers with long-term experience caring for a patient receiving home care and had experienced distress Asked to describe their caregiving experiences by speaking about the activities they take part in while providing care, the distress associated with activities of caregiving and the supports that would help reduce or alleviate caregiver distress Participated in review of draft report Provided caregiver stories for report 36

38 Limitations Caregiver experience described through patient records Limited data on caregiver experience 37

39 Caregiver Panel Objective: Explore topics that could not be captured through assessment data, learn more about caregivers, and explore why caregivers in Ontario may be distressed Process: 3-hr focus group, facilitated discussion 7 caregivers with long-term experience caring for a patient receiving home care and had experienced distress Asked to describe their caregiving experiences by speaking about the activities they take part in while providing care, the distress associated with activities of caregiving and the supports that would help reduce or alleviate caregiver distress Participated in review of draft report Provided caregiver stories for report 38

40 Caregiver Panel Described their experience as: Rewarding Extremely difficult Very time-consuming Tremendously stressful Described several challenges: Unprepared, untrained Added tasks Juggling caregiving, household tasks, work, other duties Kept from work or compelled to take early retirement Hire private, paid caregivers 39

41 Caregiver Panel - recommendations Better preparation and instruction of caregivers for the responsibilities they are taking on Provision of clear information on what home care services are available and who is entitled to them and better understanding of how to coordinate services More consistent and reliable delivery of services Greater availability of respite services More services for high-needs patients More consideration of caregivers needs and respect for the important role they play 40

42 Meaningful caregiver engagement Family caregivers supporting others in their caregiving journey through education Developing tools for Ontario s health system and health care providers to better understand the caregiver experience Caregiver advisory panel informing improvement initiatives for palliative care program Co-designing caregiver and patient initiatives to improve home care service CaregiverVoice survey, capturing experiences of caregivers and deceased through the lens of the caregiver 41