CHARTING A NEW PATH PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND

Transcription

1 CHARTING A NEW PATH PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND

2 CHARTING A NEW PATH ABOUT THE CHANGE FOUNDATION The Change Foundation (TCF) is an independent health policy think-tank that works to inform positive change in Ontario s health care system. With a firm commitment to engaging the voices of patients, family caregivers and health and community care providers, TCF explores contemporary health care issues through different projects and partnerships to evolve our health care system in Ontario and beyond. TCF was created in 1995 through an endowment from the Ontario Hospital Association and is dedicated to enhancing patient and caregiver experiences and Ontario s quality of health care. 2 THE CHANGE FOUNDATION

3 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND ACKNOWLEDGEMENTS The Change Foundation gratefully acknowledges the many people who were part of the Partners Advancing Transitions in Healthcare (PATH) project. First and foremost, our sincere thanks to the patients and family caregivers who shared their stories, worked tirelessly on the co-design teams and project committees, participated in the testing of PATH solutions and, on so many levels, helped us learn. We thank the PATH partner organizations and the leaders and health care providers within those organizations for their commitment to the project and to improving the experience of patients and family caregivers in the west Northumberland community. We gratefully acknowledge the contribution of Wendy Kolodziejczak, PATH Project Manager; Helen Brenner, Vice President of Patient Services, Chief Nursing Executive and PATH Executive Lead at Northumberland Hills Hospital; and the PATH project team for guiding and managing this complex, innovative project. We are indebted to Walter Wodchis and the Health Systems Policy Research Network (HSPRN) for their measurement expertise and guidance in the development of the local-level reporting system. And we acknowledge the hours and hours put in by QoC Health Inc., our technology partner who worked with patients, family caregivers and providers to create the platform that allowed many aspects of the project to unfold. Finally, we want to thank the evaluation team whom we contracted to carry out The Change Foundation s strategic- and system-level evaluation of PATH: Jacquie Dale and Ken Hoffman (One World Inc.), Tanya Darisi (The O Halloran Group), Marc Langlois (Marc Langlois Consulting) and Pamela Smit (Veradus Consulting). THE CHANGE FOUNDATION 3

4 CHARTING A NEW PATH GLOSSARY Co-design team: The teams of patients, caregivers, providers and partners that came together to develop solutions for each of the five project elements. Also referred to as the project element teams. Experience Based Co-Design (EBCD): An approach that enables staff and patients (or other service users) to co-design health care services and/or care pathways, together in partnership. EBCD was central to the PATH project. 1 PATH community: West Northumberland region of Ontario. PATH lead partner: Northumberland Hills Hospital (NHH) was the lead partner in the PATH project they received the financial transfer from The Change Foundation and housed the PATH project team. PATH partner organizations: The health and community care organizations in west Northumberland that came together to create the PATH partnership PATH partnership: The full group of 12 partner organizations and the 39 patients and family caregivers that made up the partnership. PATH patients: The patients and their caregivers who were enrolled in the PATH project to use the My Health Experience mobile technology tool. PATH portal: The My Health Experience mobile technology tool that patients used to keep all the information about a patient s evolving life and health story and fill in real-time surveys about their health care experiences. It also facilitated secure two-way communications between patients/caregivers and health care providers. PATH project: Partners Advancing Transitions in Healthcare (PATH) project PATH project elements: The five project components that were included in the west Northumberland PATH proposal. PATH project team: A small administrative group, housed at NHH that provided project management and operations support to the PATH project THE CHANGE FOUNDATION

5 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND PATH providers: The health care professionals who were involved in the PATH project that worked at any of the partner organizations. PATH solutions: The solutions developed by the project element teams (also referred to as co-design teams) using experience-based co-design (EBCD). PATH volunteer peer coaches: Formally trained volunteers who coached seniors and their caregivers in using the My Health Experience portal, helped seniors connect and communicate with providers and access resources in the community, and provided support and encouragement. Project element teams: The five teams made up of the PATH partnership (patients, caregivers, providers, administrators) that worked on the five project elements to develop patient-driven solutions. RISE team: The Respect, Information, Support and Empowerment (RISE) team - a group of 15 patients and caregivers who were involved in the five project teams, and who also met independently throughout the project to provide advice to all aspects of the project. THE CHANGE FOUNDATION 5

6 CHARTING A NEW PATH THE ORIGIN OF PATH The Change Foundation s strategic plan, Hearing the Stories, Changing the Story, was focused on patient engagement and improving the patient experience in Ontario. The Partners Advancing Transitions in Healthcare (PATH) project was one of two showcase engagement projects that formed the basis of our work and our learnings over that fiveyear period. PATH was a made-in-ontario patient engagement project, developed in partnership with the west Northumberland community. The premise of the PATH project was to create an environment conducive for patient engagement at every level of the local health care system engaging with, working alongside and truly integrating patients and family caregivers into the health care fabric. Charting a New PATH is a three-part report that describes what the Foundation has learned as participants in, and funders of, the PATH project. Given the complexity of the PATH project, that required a leap of faith by all those involved, we learned a lot. We have reflected on the major achievements, the unexpected opportunities that emerged, but also on the ambitions of the project that weren t fully realized. And even though we didn t achieve everything we set out to do, we don t see that as failure we see it as a learning and growing opportunity. It s in that spirit, that we share our findings. We believe our reflections and commentary can help inform the work of others in the health care sector who are in the midst of or about to embark on patient engagement activities in their organizations, communities or regions. These reports are aimed at those who are interested in pursuing these concepts more deeply and more widely. 1) PART 1 Redefining Patient and Provider Partnerships: Proposal and Project Development 2) PART 2 Creating meaningful partnerships in care: Lessons From West Northumberland 3) PART 3 On The Horizon: PATH s System Lessons 6 THE CHANGE FOUNDATION

7 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND THIS REPORT IS THE SECOND IN A THREE-PART SERIES. CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND PROVIDES AN OVERVIEW OF THE PATH CO-DESIGN PROCESS ON THE GROUND, IN WEST NORTHUMBERLAND, AS SUMMARIZED FOR THE CHANGE FOUNDATION BY THE PATH PROJECT TEAM. THE CHANGE FOUNDATION 7

8 CHARTING A NEW PATH STARTING FROM A COMMON GROUND THE WEST NORTHUMBERLAND PATH PARTNERSHIP WAS COMPRISED OF: Seniors and family caregivers Central East Community Care Access Centre Central East Local Health Integration Network Community Care Northumberland Golden Plough Lodge (long term care home) Health Systems Performance Research Network (HSPRN) Northumberland Family Health Team Northumberland Hills Hospital (NHH) NHH Community Mental Health Services Northumberland YMCA Palisade Gardens Retirement Residence Patients Canada QoC (technology company) In the Request for Proposals (RFP), it was clear that experience-based co-design (EBCD) would be an important part of PATH s quality improvement work. In June 2012, directly after west Northumberland was announced as the successful community, the Foundation hosted a two-day workshop on EBCD. A group of 55 people, including key leaders from each partner organization and seven patients and family caregivers, were brought together with EBCD facilitators from the UK. In addition, the Foundation supported the further training of 40 of the PATH patients, partners and providers by sending them to an interactive conference hosted by the Institute for Patient- and Family-Centered Care (IPFCC) in Michigan. This included several workshops, and was followed up by a series of IPFCC webinars throughout the fall of 2012 and winter of THE CHANGE FOUNDATION

9 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND STARTING WITH STORIES Once the PATH project infrastructure was in place and the training underway, the PATH project team focused on hearing and understanding the stories of seniors and their caregivers as they used the local health system. It was also important to hear the stories of front-line providers who interacted with seniors as they used the system. By the end of January 2013, the project team had interviewed 26 seniors, 13 family caregivers and 35 staff members from PATH partner organizations. Interestingly, all of the seniors and caregivers chose to have the interview at home. It was apparent that people felt more at ease sharing their stories in their home environments. FROM THESE STORIES, THE FOLLOWING KEY FINDINGS INFLUENCED THE FUTURE PATH PROJECT DESIGN: Requests for help were often reasonable and consisted of small demands for short periods of time; There was often a difference between what a person said they needed and what the system could offer; Seniors would endure poor care, service disruption or unmet needs, in order to stay in their own home; Most needs are neither sudden nor episodic, leading to the conclusion that better planning is possible; There is a gap in professional knowledge about gerontology, chronic disease and palliative care in the west Northumberland community; There was a consistent lack of communication between provider organizations, which did not promote timely transitions; and The family health team works well, but many seniors were not part of it. THE CHANGE FOUNDATION 9

10 CHARTING A NEW PATH SETTING PROJECT ELEMENTS USING EXPERIENCE-BASED CO-DESIGN Based on the findings from the stories of patients and families, and the EBCD training, the PATH project team decided on five project elements: 1) Planning Ahead/Aging Well 2) My Health Experience 3) Person Centered Care 4) Volunteer Peer Coaching 5) Funding Model There was a co-design team, made up of patients, caregivers and providers, created for each of the five project elements. Recruitment of the seniors and family caregivers for the project element teams was done by a caregiver the same caregiver who was central to west Northumberland s PATH proposal. She scheduled face-to-face home visits with the seniors and caregivers to ensure there was a good match between the individual and the work required. The process was time consuming, but it was worthwhile as they had 100% success in recruiting seniors and caregivers for all the co-design teams. Some actually participated in more than one team. Those who weren t able to join a co-design team were given other opportunities to have input (e.g., through , interviews, surveys). Also, each partner organization was asked to appoint one representative to each of the codesign teams, with other opportunities for feedback for those who couldn t join a team. The PATH project team knew it would be hard to recruit physicians, given their time commitments and payment structures, so they took a strategic approach to this recruitment. They selected a recruiter who was known to the medical community and had excellent working relationships with physicians. The team also decided to offer reimbursement, so that lost income would not be an issue. It is important to note that PATH patients and caregivers and RISE team participants were offered compensation of $12.50 per hour to attend project meetings, some of which lasted as long as six hours. About two-thirds of the participants accepted the payment and onethird did not want to be compensated. 10 THE CHANGE FOUNDATION

11 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND Once the co-design teams were set up, each meeting started with a patient story, which was captured using a standardized template. The teams report that taking the time to share and discuss the stories was invaluable. Although the stories were difficult for the providers to hear, the process engaged providers and gave them a new appreciation of the difficulty seniors face as they try to navigate through a complex health system. The PATH project team wanted to ensure that the seniors and family caregivers were equal partners in the co-design discussions. The project team gave much thought to what supports would be needed, and provided the following: Pocket talkers (personal amplifier) for those with reduced hearing Microphones Meeting locations that could easily accommodate wheelchairs and walkers Agendas that included frequent breaks, started at 10 a.m., and did not exceed six hours Printed and visual materials with larger fonts Some of the innovative projects the teams created include: The PATHway to Aging Well community website It is available to anyone looking for local information or resources, and also offers planning tools for aging well. An easy-to-use technology-based tool, called My Health Experience, that allows patients, family caregivers and providers to share personal health data and information through a computer, tablet or mobile device. Patients can monitor and self-manage health issues from home, securely communicate with their providers (also allows for provider to provider messaging), store their health information and provide real-time feedback about their experience after every health encounter. Four models of care: 1) The person-centred care model includes themes and actions to help PATH partner organizations integrate patients and family caregivers input into their day-to-day practice; 2) The volunteer peer coach model provides peer-to-peer support in the community. Trained volunteers support and encourage seniors and help them communicate with providers, access resources and advocate for self-identified needs. They also provide assistance with the My health experience technology if needed; 3) The Patient/family advisory model takes a community wide approach to recruit, educate and integrate patient and family advisors into each PATH partner organization. 4) The health care co-op model is still to be developed, but is based on the idea of a co-op arrangement to meet the needs of seniors and family caregivers in the community. THE CHANGE FOUNDATION 11

12 CHARTING A NEW PATH CREATING A STRUCTURE FOR ONGOING PATIENT AND CAREGIVER INPUT: THE RISE TEAM Once the initial patient and caregiver stories were collected, the Respect Information Support Empowerment (RISE) team was set up. The RISE team was comprised of 15 seniors and caregivers from west Northumberland, led by a caregiver in a paid part-time role who held the responsibility for coordinating their meetings and liaising with the larger PATH project team. Although the RISE team was initially set up as a support system for the patients and caregivers participating in the PATH project to ensure they were equal partners, its role evolved over time. The RISE team became a forum in which ideas were generated. They acted as somewhat of a sounding board for aspects of the PATH project, and were instrumental in ensuring the project remained grounded and focused on work that would truly meet the needs of patients and caregivers. Many of the RISE team members were also involved in other aspects of the PATH project some were volunteer peer coaches, members of project element teams as well as PATH patients using the My Health Experience handheld device. Members of the RISE team. 12 THE CHANGE FOUNDATION

13 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND LOCAL EVALUATION STRATEGY The use of the PATH My Health Experience mobile device gave the evaluation team a great opportunity to incorporate real time survey data each time a patient had an encounter with the system. That data was organized into three categories: PATIENT NEEDS ~ PATIENT EXPERIENCES ~ USE OF NEW TECHNOLOGY Indicators collected included: An assessment of the use of the technology; A rating by patients and providers of their care experiences; Standard measures such as the Patient Activation Measure (PAM) and the PACIC (Patient Assessment of Care for Chronic Conditions); Measurement of patient anxiety levels; Whether information was in the right place at the right time. A full list of indicators is provided in Appendix 1. The data was collected by QoC and analyzed by HSPRN on a weekly basis. The PATH project team received a report each Monday, enabling them to review patient-reported needs, barriers to meeting those needs, providers visited and the patient experience during the visits. In total, 120 seniors, 40 family caregivers, 135 staff members from partner organizations, nine family physicians, one specialist and one Emergency physician and 31 volunteer peer coaches were enrolled for data collection. PATH intends to access the comprehensive health system data from the Institute for Clinical Evaluative Sciences (ICES) once it is available for the PATH patients. This data will be used to examine how participation in PATH affected health outcomes and costs, and to verify whether there was a decreased use of system resources when someone was properly supported at home, which we found anecdotally. This local level evaluation was complemented by a strategic- and system-level evaluation, discussed in Report 3 On the Horizon: PATH s System Lessons. THE CHANGE FOUNDATION 13

14 CHARTING A NEW PATH Below are some of the early results from the local level data. PATIENT (EXPERIENCES) INDICATORS WITH ALL PROVIDERS Please rate your overall experience with this visit. Extremely satisfied Very satisfied Somewhat satisfied Not satisfied Percent Positive Response PERCENTAGE (CUMULATIVE AND POSITIVE RESPONSE) 100% 80% 60% 40% 20% 0 n=13 n=19 n=25 n=4 n=15 n=18 n=36 n=40 n=65 n=34 n=21 n=19 n=5 n=9 May/14 Jun/14 Jul/14 Aug/14 Sep/14 Oct/14 Nov/14 Dec/14 Jan/15 Feb/15 Mar/15 Apr/15 May/15 Jun/15 Figure 1 MONTH/YEAR As shown in the Figure 1, the majority of PATH patients (between 65% and 100% of them each week) consistently chose extremely satisfied or very satisfied to rate their experience with health care visits. This higher-than-average satisfaction rating achieved consistently between May 2014 and June 2015 can likely be linked to the increased collaboration between patient and provider facilitated by the PATH project, and the use of the My Health Experience tool. 14 THE CHANGE FOUNDATION

15 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND PATIENT (SHARED DECISION MAKING) INDICATORS WITH ALL PROVIDERS CollaboRATE Overall CollaboRATE score (before 11/12: sum of scores X 5.56, on or after 11/12; sum of scores X 3.70) 1. How much effort was made to listen to the things that matter most to you about your health issue? 2. How much effort was made to include what matters to you in choosing what to do next? 3. How much effort was made to help you understand your health issues? *(added Dec. 11, 2014) No effort was made (0) Every effort was made (9) Figure 2 SCALED ColaboRATE SCORE 100% 80% 60% 40% 20% 0 n=13 n=21 n=24 n=4 n=19 n=18 n=36 n=40 n=63 n=34 n=22 n=20 n=5 n=9 May/14 Jun/14 Jul/14 Aug/14 Sep/14 Oct/14 Nov/14 Dec/14 Jan/15 Feb/15 Mar/15 Apr/15 May/15 Jun/15 MONTH/YEAR Figure 2 shows that PATH patients felt there was shared decision-making in their health care encounters with health care professionals (as rated using the CollaboRATE shared decision making rating tool), with over 50% consistently rating this aspect of their health care experience positively over the 26-week period. THE CHANGE FOUNDATION 15

16 CHARTING A NEW PATH Marilyn was a caregiver for her husband Jim who, at age 79, lived at home with multiple complex chronic conditions. ER Visits: Pre-PATH: GP Visits: 18 8 Figure 3: Illustrates an anecdotal example of the impact the PATH project on one patient and caregiver experience, and the reduction in health care encounters. SPIN-OFF PROJECTS IN WEST NORTHUMBERLAND Within the west Northumberland community and beyond, there was a growing recognition of the value of patient engagement. Patients and family caregivers involved in the PATH project, built on their positive experience and increased capacity and went on to use their newly-acquired skills and improvement mindset beyond the PATH project. Some participated in additional training and/or contributed to other quality improvement initiatives. Partners and care providers reported that they were more intentional about involving patients and family caregivers in improvement processes. These two forces came together to inspire spin-off patient involvement activities. In retrospect, this is not surprising. Experience based co-design is a way of thinking that, once learned, is difficult to ignore. Here are a few examples: 16 THE CHANGE FOUNDATION

17 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND CHAPLAINCY PROJECT The Spiritual Care committee of Northumberland Hills Hospital wanted to improve the practice of spiritual care in the hospital. In light of the PATH project, patients were asked to join the committee, and provide their insights and input on how to shift spiritual care practice. This patient-centred approach led to a number of changes: Chaplains now approach patients directly about whether they would like to see a chaplain, instead of asking hospital staff. The opportunity for chaplaincy support is raised directly with patients on admission. The hospital has transitioned to a multi-denominational model of chaplaincy. ACUTE CARE COMMUNITY OF PRACTICE In the acute care ward, bedside nurses wanted more training in geriatrics and in the management of delirium. A family caregiver from the PATH project worked with them to develop educational tools they could use and share with patients and families. The results included: The caregivers used their own stories and experiences of caring for loved ones with delirium to help the providers develop an informative pamphlet. The pamphlet combines caregiver experience with best practices and professional advice. The presentation of information is relevant and engaging for patients and helps outline what to expect and where to find help. The caregivers suggested using plain language terms in the material that professionals might not have considered, but that families would understand (e.g., wild eyes), to describe behaviours. EMERGENCY DEPARTMENT - QUALITY AND PRACTICE COMMITTEE Northumberland Hills Hospital staff involved in the PATH project understood the potential benefit of patient and caregiver engagement in the Emergency Department (ED). A caregiver from the PATH project was asked to support this work. She spoke with ED patients and their caregivers about their experience, and identified changes that could make a real difference. She took the information and ideas back to ED staff, which resulted in shifts in practice including: Whiteboards in the ED now indicate who is on duty that day, critical information for patients about who is providing their care. THE CHANGE FOUNDATION 17

18 CHARTING A NEW PATH Staff ask patients if they would like to have their curtains open or drawn - for many patients drawn curtains leaves them feeling anxious and unsafe, or concerned that they cannot reach or be seen by staff if they require assistance. POST-ACUTE SPECIALTY SERVICES Post-acute specialty services are used by many older adults and people with dementia. The Quality Practice committee was concerned that the hospital s patient satisfaction survey did not work well for this client group. Some of the PATH patients worked with hospital staff to adapt the processes of getting survey responses. PATH patients engaged with post-acute specialty service patients, interviewing them before they left the department. The patient satisfaction questionnaire was revised with the input of PATH patients, and it is now more meaningful for this patient group. SAFE MOBILITY COMMITTEE Some hospital staff members who were involved with the Safe Mobility committee developed a relationship with a PATH patient through one of the co-design teams. They knew she had previously fallen while in hospital, and asked her to join the committee. She actively contributed in committee meetings and advocated for herself and other patients. More specifically, she spoke with patients in the rehabilitation area and brought back their stories and questions. She continues to have a regular spot on the committee agenda, which grounds the discussion in issues of direct relevance to patients. COMMUNITY CARE ACCESS CENTRE (CCAC) CAPACITY DEVELOPMENT Influenced by the PATH co-design process, the Central East Community Care Access Centre (CE CCAC) integrated patient and caregiver engagement into its own quality improvement processes. This has happened through performance excellence teams, training of new staff, and board orientation and meetings. As a result, CE CCAC staff changed their practice in that they now ask home care clients about their needs at the beginning of the visit. These may seem like small changes in practice individually, but collectively they reflect a shift in culture that is now more open to listening to patients and family caregivers on many levels, and is committed to making patient-centred improvements. 18 THE CHANGE FOUNDATION

19 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND SYSTEM RECOGNITION The senior leadership at the Ministry of Health and Long-Term Care was kept informed about PATH s progress and its key components of co-design and broad partnerships to raise the project s profile. For example, a tour was arranged for the former Minister of Health, the Honourable Deb Matthews and former Associate Deputy Minister Susan Fitzpatrick, to visit the PATH community on separate occasions. Furthermore, former Minister Matthews publicly credited PATH as being the catalyst for the province s Health Links model. A potential changer. game health care FORMER ONTARIO HEALTH MINISTER DEB MATTHEWS ON PATH THE CHANGE FOUNDATION 19

20 CHARTING A NEW PATH RECOGNITION During the course of the project, the PATH partnership was recognized with three awards: The Minister s Medal Honour Roll awarded in November This annual MOHLTC award recognizes health care partners who work collaboratively to put patients at the centre of care and promote system value through quality. 20 Faces of Change awarded in This award from The Change Foundation (adjudicated independently) recognized outstanding contributions to patient- and familycentered care. Canadian Health Informatics Patient Care Innovation awarded in June This award honours a private and public sector team effort to implement a health IT solution that positively impacted patient care. THE NEXT STEP IN THE JOURNEY The PATH project team has continued to develop its program. Although The Change Foundation s funding ended in the spring of 2015, Northumberland Hills Hospital and QoC Health have been able to support continued use of the My Health Experience technology tool and the volunteer peer coaches. In December 2015, the PATH project was one of five partnerships to receive an Ontario Centres of Excellence grant for work to improve remote patient monitoring and care. This will allow further development of the technology platform. 20 THE CHANGE FOUNDATION

21 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND SUMMARY The PATH project had notable positive impact on seniors and family caregivers at the local level, as outlined throughout these reports. From the overall project perspective, the most significant and profound finding was that PATH would have followed a very different course if the seniors and caregivers had not been at the table. THE CHANGE FOUNDATION 21

22 CHARTING A NEW PATH: A THREE-PART REPORT APPENDIX: APPENDIX 1: LIST OF LOCAL MEASUREMENT INDICATORS BY FREQUENCY 22 THE CHANGE FOUNDATION

23 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND APPENDIX 1: LIST OF LOCAL MEASUREMENT INDICATORS BY FREQUENCY SENIOR/CAREGIVER QUESTIONS FOR EACH ENCOUNTER OBJECTIVES QUESTIONS INDICATOR The person has the ability to identify the most important things providers need to know about them ( what matters most to me when I m receiving care at home and in the hospital ) The PATH provider I just visited was: 1. My family Dr., another family Dr., another provider at the Family Health Team, homecare provider, emergency department, hospital inpatient, rehabilitation inpatient, Restorative Care inpatient, hospital X-Ray/ Ultrasound/CT/MRI clinic 2. Other providers I just visited: Specialist doctor, outpatient laboratory, walk- in clinic, alternative health care provider (e.g. naturopath), physiotherapist, occupational therapist 1. Location of visit % of visits per PATH partner location 2. Location of visit % of visits outside the partnership 3. If this was a homecare visit was this provider a new provider? If yes, a) I would have preferred my regular provider; b) it was a new provider but this was not a problem. 4. Did this visit/encounter occur as a result of not having a need met elsewhere? 5. Did the provider use the portal or your mobile device during this visit? 6. Do you think the provider had the information they needed to attend to your needs (e.g. information from a previous visit, completed test results, recent specialist notes) 7. Please choose the answer that best describes whether your needs were met during this visit: a) My needs were addressed and responded to b) My needs were not discussed c) My needs were discussed and the next steps work for me d) My needs were discussed and the next steps do not work for me 3. Yes/No/Not Applicable 4. Yes/No 5. Yes/No 6. Yes/No 7. % of times each of the options were chosen THE CHANGE FOUNDATION 23

24 CHARTING A NEW PATH To develop and adopt a person centered care model that allows care to be delivered according to a person s needs and is utilized across the PATH partnership To identify person centered care priorities most important to the senior and/or their caregiver SENIOR/CAREGIVER QUESTIONS FOR EACH ENCOUNTER OBJECTIVES QUESTIONS INDICATOR 8. Did each person you encountered during this visit introduce themselves and explain their role? 9. How much effort was made to listen to the things that matter most to you about your health issues? 10. How much effort was made to include what matters to you in choosing what to do next? 11. Did you feel that you had to repeat your health condition and information unnecessarily? 8. Likert Scale 1-4 (Never, Sometimes, Frequently, Always) or N/A- I am familiar with this person 9. Likert scale 1-10 (1 = No effort was made 10 = Every effort was made) 10. Likert scale Likert Scale 1-4 (Not at all, Sometimes, Frequently, Always) 12. The health care professional arranged for follow-up care or provided me with clear instructions regarding next steps. 13. I had all of the services I needed to meet my needs. 14. I was able to have the services I needed in my own home. 15. If you were not able to have services at home to meet your needs did it result in a visit to another health care provider? If Yes, where did the visit take place? 16. If this was a homecare visit, was all of your homecare information shared with you? 12. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 13. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 14. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 15. Yes/No 16. Yes/No/NA 24 THE CHANGE FOUNDATION

25 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND To identify person centered care priorities most important to the senior and/or their caregiver SENIOR/CAREGIVER QUESTIONS FOR EACH ENCOUNTER OBJECTIVES QUESTIONS INDICATOR 17. The health care provider/s treated me with respect. 18. Were you given any opportunity to be able to choose the homecare workers that work best with you? 17. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 18. Likert scale 1-10 (1 = No effort was made 10 = Every effort was made) Decrease senior and caregiver anxiety levels Overall Experience 19. Did you want to make a change to any homecare workers? If yes, was it possible? 20. Did your homecare service provider today ask you the following questions? a) I m here to help you with., is that still the most important thing I can do for you today? b) I will be leaving in a few minutes. Is there anything else I can do for you before I go? c) Is there anything you would like me to tell my supervisor? 21. Please rate your level of anxiety before this visit occurred. 22. Please rate your level of anxiety after the visit. 23. Please rate your overall experience with this visit. 19. Yes/No 20. Yes/No 21. Likert Scale 1-4 (no anxiety, some anxiety, a lot of anxiety, extreme anxiety) 22. Likert Scale 1-4 (no anxiety, some anxiety, a lot of anxiety, extreme anxiety) 23. Likert Scale 1-4 (not satisfied, somewhat satisfied, very satisfied, extremely satisfied) THE CHANGE FOUNDATION 25

26 CHARTING A NEW PATH Seniors and caregivers will monitor/track what is important to them and will make decisions on who they share the information with To assess ease of use and benefits of using technology Person centered care priorities most important to the senior and/or their caregiver SENIOR/CAREGIVER QUESTIONS FOR EACH ENCOUNTER OBJECTIVES QUESTIONS INDICATOR SENIOR/CAREGIVER INDICATORS END OF EACH MONTH 1. Were you able to track what you wanted to track at home? 2. What do you track at home? (Develop a drop down list of common tracking items such as BP, weight, BS etc.) 3. Did the health care providers pay attention to what you are tracking? 4. Were the PATH technology tools easy for you to use? 5. Did using the PATH technology tools improve your overall experience? 6. Did you miss any appointments as a result of: a) Not having transportation to the appointment? b) Not having help at home to get ready for the appointment? 1. Yes/No/NA 2. % of typical things tracked by seniors/ caregivers 3. Likert scale 1-4 (never, sometimes, frequently, always) 4. Yes/No 5. Yes/No Option (if No, have an option to provide input) 6. Yes/No To understand what is normal aging and understand chronic health conditions SENIOR/CAREGIVER INDICATOR BEGINNING AND END OF PILOT 1. All standard questions from the Patient Activation Measure (PAM) 2. All standard questions from the Patient Assessment of Care for Chronic Conditions (PACIC) PAM Index PACIC Index 26 THE CHANGE FOUNDATION

27 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND Provider will be actively engaged in using the portal/mobile devices, are able to meet the person s needs, and assist in minimizing transitions SENIOR/CAREGIVER QUESTIONS FOR EACH ENCOUNTER OBJECTIVES QUESTIONS INDICATOR PROVIDER INDICATORS END OF EACH WEEK 1. How many patients from the PATH pilot did you see this week? (Note: Log in information will identify the providers and organizations) 2. Of all of the patients you saw this week, how many had caregivers with them? 1. Drop down box of options (1-50) 2. Likert Scale 1-4 (None, Some, Most, All) Provider will be actively engaged in using the portal/mobile devices, are able to meet the person s needs, and assist in minimizing transitions 3. Were you able to include the caregivers in all of your discussions? 4. Did you access the person s summary pages, health timeline, or outline of selfidentified needs on the portal/mobile devices? 5. Were you aware of the presenting needs/ priorities of the person for each visit? 6. How often were you able to meet the person s needs? a) I discussed and responded to the needs b) The needs were not discussed c) The needs were discussed and the next steps worked for the person d) The needs were discussed and the next steps do not work for the person 7. Do you believe meeting the person s needs prevented an unnecessary visit? (e.g. office, ER) 8. If you were not able to meet some of the needs, what were the barriers? Choose all that apply. (drop down list of possible barriers) 9. Are you aware of any unnecessary visits as a result of the persons needs not being met? If yes, indicate the type of unnecessary visit. (drop down list of) 3. Likert Scale 1-4 (never, sometimes, frequently, always 4. Likert Scale 1-4 (never, sometimes, frequently, always) Correlate answers to whether it actually occurred 5. Likert Scale 1-4 (never, sometimes, frequently, always) 7. Likert Scale 1-4 (never, sometimes, frequently, always) 8. Measure the types of barriers and the % of occurrences 9. Yes/No/Unsure THE CHANGE FOUNDATION 27

28 CHARTING A NEW PATH Improve senior/ caregiver experiences SENIOR/CAREGIVER QUESTIONS FOR EACH ENCOUNTER OBJECTIVES QUESTIONS INDICATOR PROVIDER INDICATORS END OF EACH MONTH 10. Having the person s information and knowing their needs: a) Prevented me from having to ask for information unnecessarily? b) Saved time? c) Changed the way you provided care? 10. a, b, & c. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) Improve senior/ caregiver experiences Improve provider experiences Encourage the use of the RelayHealth Messaging Option to optimize communication To develop and adopt a person centered care model that allows care to be delivered according to a person s needs and is utilized across the PATH partnership 11. Using the portal and addressing the person s needs resulted in shared decision making 12. I am working more closely with the persons informal caregivers? 13. Using the messaging option in the portal has been helpful in communicating with my patients 14. How satisfied are you with the new tools you have to work with? INDICATORS MONITORED BY QOC/PATH TEAM 1. Tracking of Messaging Option: a) volume of use b) response times c) overdue messages 1. Staff fully understand the new model and person centered care actions 11. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 12. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 13. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) 14. Likert Scale 1-4 (strongly agree, agree, disagree, strongly disagree) a) % of seniors/ caregivers/providers using this option b) average response time c) % of overdue messages #/% of staff from each organization who have attended education sessions 28 THE CHANGE FOUNDATION

29 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND THE CHANGE FOUNDATION 29

30 CHARTING A NEW PATH 30 THE CHANGE FOUNDATION

31 PART 2: CREATING MEANINGFUL PARTNERSHIPS IN CARE: LESSONS FROM WEST NORTHUMBERLAND THE CHANGE FOUNDATION 31

32 CONTACT US The Change Foundation P.O. Box Front Street West, Suite 2501 Toronto, ON M5V 3M1 Copyright: The Change Foundation 2016