North West Local Health Integration Network Share Your Story, Shape Your Care Community Engagement Initiative Full Report May 2009 Share Your Story, Shape Your Care – Full Report i North West Local Health Integration Network Table of Contents 1. Introduction 1 2. Our Approach 3 3. Participation Profile 13 4. Choicebook Results 24 Biggest Concerns 24 Missing Priorities 26 Primary Care 29 Specialty Care 31 Mental Health and Addictions Services 32 Long-Term Care 34 Chronic Disease Prevention and Management 36 Geography and Transportation 38 Troubles in Our Economy 39 Engaging Aboriginal Peoples 42 A More Coordinated or “Integrated” System 43 Electronic Health Records 44 Future Priorities 47 Stories About a “Well Integrated” Experience 49 Stories About an “Uncoordinated” Experience 54 Ideas for a More Integrated System 61 Evaluation 67 5. Story and Idea Findings 70 6. Conversation Guide 74 7. Conclusion 75 Appendix A: Participation by Community 76 Share Your Story, Shape Your Care – Full Report ii North West Local Health Integration Network 1. Introduction The North West Local Health Integration Network (LHIN) launched its Share Your Story, Shape Your Care project in January 2009. This innovative community engagement initiative was conducted to involve local residents and health care professionals in a dialogue on priorities for the local health system. The results of the project will be used to inform the LHIN’s 2nd Integrated Health Services Plan (IHSP) and its ongoing allocation decisions. This summary report describes the full results of the project, as part of the North West LHIN’s commitment to transparency and accountability. 1.1 Integrated Health Services Plan (IHSP) All 14 LHINs in Ontario have developed Integrated Health Services Plans. These Plans are key documents that guide the activities and health care priorities of each region. The North West LHIN’s 1st Integrated Health Services Plan was approved by the Board of Directors in 2006 and sets direction for the region until 2010. The IHSP was developed in an inclusive process and involved significant community engagement with local residents and health care providers across Northwestern Ontario. It identifies priorities for health system improvements in our region and sets out action plans to address these priority health care issues. These priorities are: Access to care o Primary health care o Chronic disease prevention and management o Specialty care and diagnostics services o Mental health and addiction services Long-term care services Integration of services along the continuum of care Engagement with Aboriginal people French language health services Integration of e-Health Regional health human resources plan With 2010 approaching, the North West LHIN has started to develop its 2nd IHSP, to set care directions for 2010-13. 1.2 Community Engagement and the 2 nd IHSP Community engagement was a key component in developing our 1st IHSP. This will continue to be the case as we build our 2nd Plan, reflecting the North West LHIN’s ongoing commitment to listening to and working with our local communities and stakeholders in delivering quality health care to the people of Northwestern Ontario. The Share Your Story, Shape Your Care project was a key part of this community engagement approach and used a blend of online or “web-based” and in-person tools to allow local residents and health care providers to share their personal stories about local Share Your Story, Shape Your Care – Full Report 1 North West Local Health Integration Network health care and their ideas about how our local health care system could be further improved. The first phase of Share Your Story, Shape Your Care received over 800 contributions from people across our region, including 666 Choicebook responses and 140 separate story/idea submissions. In total, the North West LHIN received over 190,000 words of comments from participants. This summary report provides an overview of the responses received from participants. Share Your Story, Shape Your Care – Full Report 2 North West Local Health Integration Network 2. Our Approach The Share Your Story, Shape Your Care project was carefully planned and designed to be accessible to local residents and focus on the health care issues that were most important to them. 2.1 Timing Share Your Story, Shape Your Care was launched on January 12, 2009 and the first phase closed on February 28, 2009. The engagement project was “live” for seven weeks, which, according to leading community engagement research and practice, is the optimal length for a project of this scope. It allows adequate time for people to learn about the initiative, take part and encourage others they know to consider doing the same. Share Your Story, Shape Your Care was supported by a comprehensive communications strategy to raise awareness about the project across Northwestern Ontario and encourage people to consider taking part. The initiative was launched in early 2009 to support the North West LHIN’s community engagement while developing its 2nd Integrated Health Services Plan (IHSP). The results of Share Your Story, Shape Your Care will be made available in the spring of 2009 and will be used both to inform the IHSP and to frame further community engagement activities in the latter part of 2009. 2.2 Why an Online Approach Was Used The project used an online approach to engage local communities. This was done to make it possible for people across Northwestern Ontario to take part easily. People could visit the website and, within a short amount of time, learn about the health challenges facing our region, complete the Choicebook to identify their health care priorities and share a story or idea about improving the health care system. The North West LHIN decided to use online technologies because they allow people to participate at a time that works best for them as well as from a location where they have convenient access to the internet – whether at home, work, school or a public building, such as a community library. It provides a way for local residents to overcome the travel barriers that may prevent them from participating in a North West LHIN in-person community event. In fact, the North West LHIN has been the first of the 14 LHINs to conduct a large-scale community engagement project using online, internet tools. Nevertheless, Share Your Story, Shape Your Care was also designed to be accessible to people who preferred or were not able to participate online. A “paper version” of the Choicebook and Story/Ideas tool was made available, the results of which were entered and analyzed alongside the online responses. Furthermore, a “Conversation Guide” Share Your Story, Shape Your Care – Full Report 3 North West Local Health Integration Network was developed to allow people to discuss health care priorities with people in their own communities, families and workplaces. Paper copies of all tools and surveys were available in health care facilities, on the Share Your Story, Shape Your Care website and could also be ordered from the North West LHIN office. 2.3 Engagement Tools A suite of engagement tools was developed as part of Share Your Story, Shape Your Care. These allowed people to take part and submit their views to the North West LHIN using the tool most suited to their needs, whether this was answering closed ended questions in a survey format, writing to tell a story or describe an idea, or hold a meeting with friends, family or co-workers to discuss health care priorities for our region. The tools developed were: 1 Share Your Story, Shape Your Care Website 2 Choicebook 3 Stories and Ideas Submission Tool 4 Choicebook and Stories/Ideas Paper Version 5 Conversation Guide 2.3.1 Share Your Story, Shape Your Care Website A special website was built at www.northwestlhin.on.ca/myvoice. This site was the “launch pad” for people to take part by either completing an online Choicebook or submitting a story and/or idea. The site provided background information on the project, a blog by North West LHIN CEO Gwen DuBois-Wing, a message from the Board of Directors and a place for participants to assist in raising awareness of the project by “telling a friend” about the opportunity to take part. On the homepage, participants could watch a special video message from North West LHIN CEO Gwen DuBois-Wing. This YouTube-enabled broadcast included a personal welcome to the site and an invitation to take part. An image of the Share Your Story, Shape Your Care Website is shown on the following page. Share Your Story, Shape Your Care – Full Report 4 North West Local Health Integration Network An image of the Share Your Story, Shape Your Care Website Other pages from the Share Your Story, Shape Your Care Website Share Your Story, Shape Your Care – Full Report 5 North West Local Health Integration Network The regular blog by North West LHIN CEO Gwen DuBois-Wing provided weekly news updates on the project, summary reports on demographics and links to interesting participant stories on the site. 2.3.2 Choicebook The principal engagement tool was the deliberative Choicebook. The Choicebook was more than a simple survey – it provided participants with facts, background information and fictional “scenarios” to consider before responding to questions about how our local health care system could be improved. This meant that participants had access to some of the same information as decision- makers and allowed them to arrive at reasoned judgement on important issues, instead of just “top of mind” survey responses. The Choicebook invited participants to assess the potential impact of proposed measures, identify their overall priorities for our local health system and share stories and ideas about health system integration and how it could be strengthened.