It’s all in the proposal Getting Engaged It’s all in the proposal AHP/HCPRA National Conference Montreal, Quebec Julie White June 25, 2009

Engagement in health in Ontario Local Health Integration Network model Legislation - community engagement is required by LHINs and health service providers. Local people best to determine their health service needs and priorities. What is civic engagement and how do we plan for its success? In April 2005, the Ontario Ministry of Health and Long-Term Care (MOHLTC) closed its regional offices and replaced them (and the District Health Councils which ceased to operate in 2004) with 14 new organizations across the province. Called Local Health Integration Networks (LHINs), the networks were a key component of the health care transformation agenda announced by then Minister of Health and Long-Term Care George Smitherman. LHINs were mandated to provide the essential strategic work of planning and funding health systems in concert with community needs and interests. The creation of the LHIN system signified Ontario’s first step toward regionalization of the delivery of health care.   LHINs are not-for-profit statutory corporations designated as Crown agencies and governed by the Local Health System Integration Act, 2006 (LHSIA). The ideology behind the creation of the 14 LHINs in Ontario is that community-based care is best planned, coordinated and funded in an integrated manner at the community level because local people are best able to determine their health service needs and priorities. LHINs are required, through the Act, to engage in community engagement on an ongoing basis. Under LHSIA, the term “community” includes patients, health service providers and employees involved in the local health system. The scope of community engagement is not prescribed, but can include holding community meetings, focus groups, establishing advisory committees or a whole host of other activities. In a few minutes I will address what LHINs – now two years into their mandate – are doing to define community engagement and metrics to help evaluate their success

LHINs 101 1 – Erie St. Clair 2 – South West 3 - Waterloo Wellington 4 – Hamilton Niagara Haldimand Brant 5 – Central West 6 – Mississauga Halton 7 – Toronto Central 8 – Central 9 – Central East 10 – South East 11- Champlain 12- North Simcoe Muskoka 13- North East 14 – North West Here’s our self-promotion slide – my organization, the South East LHIN – LHIN 10 -- handles an annual budget of $900 million. The South East region is large – extending along Lake Ontario and the St. Lawrence River from Brighton through Trenton, Prince Edward County, Belleville, Kingston, Brockville and Prescott to Cardinal; north to Merrickville, Perth and Smiths Falls and over to Bancroft and south to the USA border. The population of 482,000 is relatively small and is spread across this large geographic area with both urban centres and large rural areas. Of significance for health planning are the nearly 80,000 residents of the area who are seniors. Average population size for each of these regions is about 800,000.

Why engage? Not just because of legislation… Gov’t spending $172B in 2008 on our health system – 10% of GDP Involving the public through citizen engagement is becoming more of a norm Roots of engagement and democracy are linked to accountability Under the Act, each LHIN is required to develop a publicly-available integrated health service plan for its region. Called Integrated Health Services Plans (IHSPs), these comprehensive documents are three-year planning frameworks that are required to be consistent with the Ministry’s provincial strategic plan, funding received by the LHIN from the Ministry and any other terms prescribed by governing legislation. In 2006, the South East LHIN released its first IHSP and planning is now underway to guide development of the IHSP that will shape the developments in the delivery of health care across our region from 2010/11 through 2012/13. From the outset, LHINs have been mandated to engage with their communities – making the healthcare system more transparent while encouraging members of the public to share their views and priorities. In Canada, this year, $172 Billion dollars – those are our tax dollars – are being spent on health care. That is 10.7 percent of the Gross Domestic Product – over $1 in every $10 generated in Canada is spent on health care – are we getting our money’s worth? I cannot answer that question alone … we need to build more accountability into the system. There are predictions in every province that over 50% of operating revenue will soon be spent on health care and baby boomers still haven’t reached retirement age … not only are we aware that more people will increase the demand of sickness care, but there will be fewer of us left working to pay for it… again, we have some significant challenges ahead. - And now we are facing some economic hard times – the economy is forcing us to change. But how do we make those decisions? The movement to greater public involvement in health care decision-making is not new. While the LHIN model has brought health care decision-making closer to communities, Abelson and Gauvin (2006) examined models that include more direct public involvement, concluding the use of the public in decision-making is becoming more of a norm from a national perspective as accountability concerns are being addressed. At the same time, they reported there has been a shift away from more traditional public participation practices to citizen engagement as a method for establishing and re-establishing trust between citizens and decision makers. “Citizen engagement has become the “new public participation” with central tenets that include greater emphasis on information and power sharing, and mutual respect and reciprocity between citizens and their governors. The roots of citizen engagement and the democratic right for citizens to participate in public affairs, are inextricably linked to notions of accountability.” http://www.cprn.com/documents/28104_en.pdf A paper prepared for the Canadian Policy Research Network, Julia Abelson and François-Pierre Gauvin,. Centre for Health Economics and Policy Analysis McMaster University April 2004  

Why engage? 78% say very important to be involved in major decisions affecting health care system in Canada 85% would feel better about government decision-making if input sought from average citizens A public opinion poll conducted by EKOS (2002) showed that a vast majority of Canadians (78%) believe that it is very important for citizens to be involved in major decisions affecting the health care system in Canada. A more recent poll showed that 85% of Canadians would feel better about government decision-making if they knew that government regularly sought informed input from average citizens (EKOS, 2005). Taking the Pulse: Primer on Public Involvement, Health Council of Canada, July 2006, retrieved from www.healthcouncilcanada.ca Given that health care is a publicly-accessible system that is funded through taxation, citizens are directly affected by the decisions made about the system – whether it is from a patient perspective (such as ensuring that certain drugs are covered through medicare or ensuring they receive timely access to quality care in an emergency room) or whether it be through their financial support of the system through payment of sales and other taxes. It follows then that decision making around resource allocation and spending prioritization has a direct impact on citizens. As a result, participation by members of the public in resource allocation and spending decisions should be authentic and consequential. Unlike other parts of the world, such as South America, Asia and parts of Africa, there has not been significant involvement by Canadians in overall budgetary matters. According to the Lukensmeyer Report (2006), these processes are often highly politicized, overly influenced by moneyed special interests, and aimed simply at defusing contentious issues as opposed to actually resolving them. Participatory budgeting, defined broadly, is a move­ment to make transparent and subject to public influence the expenditures of government. http://www.businessofgovernment.org/pdfs/LukensmeyerReport.pdf by Carolyn Lukensmeyer, 2006, Public Deliberation: A Manager’s Guide to Citizen Engagement  

Why engage? Your money – your care Who are “normal” decision-makers? Participatory budgeting Given that health care is a publicly-accessible system that is funded through taxation, citizens are directly affected by the decisions made about the system – whether it is from a patient perspective (such as ensuring that certain drugs are covered through medicare or ensuring they receive timely access to quality care in an emergency room) or whether it be through their financial support of the system through payment of sales and other taxes. It follows then that decision making around resource allocation and spending prioritization has a direct impact on citizens. As a result, participation by members of the public in resource allocation and spending decisions should be authentic and consequential. Unlike other parts of the world, such as South America, Asia and parts of Africa, there has not been significant involvement by Canadians in overall budgetary matters. According to the Lukensmeyer Report (2006), these processes are often highly politicized, overly influenced by moneyed special interests, and aimed simply at defusing contentious issues as opposed to actually resolving them. Participatory budgeting, defined broadly, is a move­ment to make transparent and subject to public influence the expenditures of government. http://www.businessofgovernment.org/pdfs/LukensmeyerReport.pdf by Carolyn Lukensmeyer, 2006, Public Deliberation: A Manager’s Guide to Citizen Engagement  Specifically, participatory budgeting commonly refers to discussion- driven processes through which citizens debate, analyze, prioritize and propose public expenditures and investments to government. To date, most experiments in participatory budgeting have been conducted at the city level. In some cases, the participatory budgeting pro­cess can also include public monitoring and evalua­tion of budget implementation, as has been tested at the local level in parts of Africa and Asia. Stakeholders in a participatory budget process usually include the general public (particularly poor and vulnerable populations) and organized civil society groups such as labor unions and community-based organizations.  

But what does the “public” know? YouTube - Parks and Recreation Promo - The Front Lines Many of us have been there, right? Oftentimes, when it comes to healthcare, our public meetings tend to look a little more like this....

Public meeting tonight AD MAD sAD BAD

Public meeting tonight – who do you get?

Creating a culture of engagement What is engagement? How do people want to be engaged? How do you know if you have been successful? Engaging with Impact project Engaging with impact addresses the challenge of evaluating engagement, and proposes a series of targets and indicators to assess performance and develop a culture of engagement across Ontario's public health system. Under provincial legislation, LHINs are mandated to engage with citizens to develop policy and respond to community priorities and needs. The question is how. The report advocates investing in a culture of engagement that in time can transform the business of health systems administration. This is a culture that citizens want, and increasingly expect. Engaging with impact addresses those who believe that community engagement can be a major driver of health systems reform.

A call for citizens LHINs have variety of tools and methods for engagement Evidence-based tools and best practices Health Council of Canada’s 7 conditions for successful consultation: representativeness, independence, early involvement, influencing the policy decisions, providing information, resource accessibility & structured decision-making While the Ministry-LHIN Accountability Agreement sets out a process that requires the LHIN to develop an IHSP for 2010/11 – 2012/13 that is based on a solid foundation of community engagement, the agreement does not provide further detail about the amount, quality or type of consultation is expected. Over their three-year history, LHINs have adopted a wide variety of tools and methods for community engagement. At the centre of several models for engagement from the first IHSP is the International Association for Public Participation (IAP2) Public Participation Spectrum. The South East LHIN has built its framework for its IHSP community consultation program on the IAP2 model. See Appendix B.   The LHIN is also taking advantage of existing evidence-based tools and best practices. According to the Health Council of Canada, there are seven key conditions that are key to successful public consultation and participation processes: i) representativeness; ii) independence; iii) early involvement; iv) influencing the policy decisions; v) providing information; vi) resource accessibility; and vii) structured decision-making. The Health Council of Canada Primer on Public Involvement (2006) confirms there has been “relatively limited” activity within the public involvement toolbox used by the Canadian health system. Health policy and decision-makers have traditionally relied on conventional methods of public communication and public consultation to involve the public: information campaigns, public hearings, focus groups, public opinion polls, referenda, and elections to local or regional boards. While these traditional methods appear to resonate within the comfort level of health organizations, they report that while implementing these methods, they are faced with several difficulties: challenges in mobilizing the public; political interference in the process; difficulties in dealing with very short deadlines; complex and emotional policy issues; lack of resources; and creating expectations that cannot be fulfilled. Taking the Pulse: Primer on Public Involvement, Health Council of Canada, July 2006, retrieved from www.healthcouncilcanada.ca

Tell me, I forget. Show me, I remember. Involve me, I understand. A call for citizens Deliberative democracy IAP2 – effective participation acknowledges the desire for humans to participate in the decisions that affect them. Tell me, I forget. Show me, I remember. Involve me, I understand. - Chinese proverb Given the experiences of the traditional model and the absolute need to provide more public input into the wicked issue of health care funding, the South East LHIN will invest in a deliberative democracy process as a strategy for democratic renewal which could change radically the nature and impact of public participation and assist the LHIN in ensuring it is best meeting the needs of its citizens.   This foundational model has been identified as a useful tool by several LHINs, the South East LHIN will build its community engagement platform based upon the principles upheld by and best practices identified by IAP2. According to IAP2, effective public participation acknowledges the desire for humans to participate in decisions that affect them. It provides a means for incorporating the public’s values, interests, needs and desires that affect their lives and encourages the public to provide meaningful input into the decision process.

Planning engagement Planning successful public consultations doesn’t start with an event. IAP2 planning process helps you define the best way to meet your desired needs. Do you want to truly consult? Inform? Involve?

IAP2 foundations Values-based Decision-based Goal-driven Effective public participation improves decisions by bringing all perspectives to the table. It is based on three foundations which guide the level of participation to be applied to a project or initiative. Those foundations are: Values-based – values held by the community, stakeholders and the LHIN will form opinions, fears, hopes and dreams. Within a project like the IHSP re-do, values will affect how people perceive the decision process; participate, or not; and perceive the decision outcome. Decision-based – To be effective, the public participation can affect the shaping of the decision and its outcome. Goal-driven – Specific, purposeful, productive outcomes need to be achieved with the public throughout the project. IAP2 Planning for Effective Public Participation workbook, 2006

Aggens’ Orbits of Participation Deciders Planners Advisors Reviewers Observers Just who are these citizens who want to be involved anyway? One way to think of stakeholders is by the extent of their level of interest and perceived distance from the impacts of the decision. Some people will be extremely engaged – attending every meeting, actively taking part in every part of the process. Others will simply comment from afar. The International Association for Public Participation has this visual representation of the concept. It was originally developed by Lorenz Aggens of Involve in Illinois. The darkest circle, in the centre is where the decision/issue or problem resides and it is immediately surrounded by the deciders. This decision-making centre is surrounded by “orbits” of activity. The closer to the centre, the greater than activity and energy within it. What this model really does is clarify there is no single public – but different levels of public based on differing degrees of interest and ability to participate. Thus the design of a public participation plan must take into account the multiple levels of the public. Your process needs to provide for the needs of those in all orbits. People may move from orbit to orbit. When it comes to engaging citizens, we need to recognize some people may be willing to work collaboratively with you, others may want to give input or be informed. Unsurprised apathetics

IAP2’s Public Participation Spectrum Increasing level of public impact Inform Consult Involve Collaborate Empower To provide the public with balanced and objective information to assist them in understanding the problem, alternatives, opportunities and/or solutions. We will keep you informed. Fact sheets Web sites Open houses To obtain public feedback on analysis, alternatives and/or decisions. We will keep you informed, listen to and acknowledge concerns and aspirations, and provide feedback on how public input influenced the decision. Public comment Focus groups Surveys Public meetings To work directly with the public throughout the process to ensure that public concerns and aspirations are consistently understood and considered. We will work with you to ensure that your concerns and aspirations are directly reflected in the alternatives developed and provide feedback on how public input influenced the decision. Workshops Deliberative polling To partner with the public in each aspect of the decision including the development of alternatives and the identification of the preferred solution. We will look to you for advice and innovation in formulating solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible. Citizen advisory committees Consensus-building Participatory decision-making To place final decision-making in the hands of the public . We will implement what you decide. Citizen juries Ballots Delegated decision Public participation goal Promise to the public With our ENGAGE 2009 process that I will talk about shortly, you will see the tools we employed that emphasized consult (with the general public and key stakeholders such as elected officials; involve with our health service providers and collaborate with our citizens’ reference panel. Example techniques

ENGAGE 2009: Citizens’ Assembly 3 Saturdays “Public session” Outcomes To truly collaborate with a representative group of citizens in an effort to find citizen-created solutions to healthcare resource allocation, the South East LHIN will utilize a similar model to the one it used in March 2008 to develop a vision for the system in the region. Called a Citizens Regional Health Assembly, that program was successful in building consensus among the public and the LHIN. This time around, the assembly will engage residents from the region with an end goal of creating a framework on which to base allocation decisions to be laid out in the next IHSP. This process will involve working with consultants MASS LBP, who will be responsible for selecting 36 people (from outside the health service sector) through civic lottery to participate in three full-day sessions to be held in a community centre in the middle of the region. Invitations will be sent out to 2,000 households across the region (selected on a weighted geographical basis), with a letter indicating that those who respond to the letter will have their name entered into a draw where 36 names will be chosen to respond to the opportunity will have an opportunity to help shape the delivery of health care in their region. The letters will be directed to any member of the household over the age of 18 who does not work within the health care sector. To ensure as many people will have an opportunity to participate, child care, elder care and transportation subsidies will be provided. Further, several accommodations can be made for those with visual or hearing impairments. The sessions will be conducted in English only.   Participants will learn more about the health system, so they will have the background knowledge to be comfortable in developing a set of citizen-centered priorities and recommendations.

Citizens’ Reference Panel

ENGAGE 2009 23 communities – open houses Earned media campaign Telling the story about the role of citizens in making decisions These recommendations and scenarios will then be taken out across the region to 23 communities through a series of open houses to be tested and validated as part of an expanded consultation phase in spring 2009. Sessions will also be held in each of these communities for health service providers. The methodology for this component will be similar to the community meetings held in the first IHSP engagement process. A detailed earned media campaign will be undertaken by LHIN staff to generate interest in the community consultation meetings and engagement activities. Letters to the editor and editorial boards will be utilized as will speaking engagements by LHIN board members and selected staff. In an effort to manage advertising expenditures, public service announcements, the web and host of other methods will be used to solicit input and participation from the public. A focus will be placed on telling the story of the citizen’s assembly and in emphasizing the important role that citizens have in choosing how their tax dollars are spent on health care. This will build interest in the process and its outcomes, and demonstrate to LHIN stakeholders and the public at large the LHIN’s commitment to original, high-value public consultation. There are three key occasions that will naturally make great media opportunities: the Civic Lottery, the CRHA process and the recommendations. There is a sense in which the citizen already has a stake in government for the simple reason that all government operations are financed by taxation. It is our money. Since the citizen is at once the financier and the consumer of public services, this relationship can only be enhanced by greater direct citizen involvement in the management of public spending. As we have seen, sortition enables the citizen to take on some level of ownership of the political process.”

Open house sessions Included Front-line providers, municipal and elected representatives and general public Provided attendees with opportunity to have one-on-one conversations with LHIN reps, have questions answered and provide direct input Input also encouraged via survey tool (also available on-line for 6-week period)

Aligning priorities

How do we measure up? Metrics still being defined, although LHINs are accountable for CE in their accountability agreements with Ministry.

Final thought “Wisdom is what’s left after we’ve run out of personal opinions.” -- Cullen Hightower

Resources Check out IHSP section at www.southeastlhin.on.ca Loads of tools/techniques available at www.iap2.org (Consider certification as an IAP2 practitioner!) www.masslbp.com Taking the Pulse: Primer on Public Involvement, Health Council of Canada, July 2006, retrieved from www.healthcouncilcanada.ca www.businessofgovernment.org/pdfs/LukensmeyerReport.pdf by Carolyn Lukensmeyer, 2006, Public Deliberation: A Manager’s Guide to Citizen Engagement