The Gold Standard: Rules of Engagement
By Michelle Gold
Network, Fall 2005
Building a responsive, accountable health system begins with an understanding of the public’s experience and expectations for health care. In Canada, governments are responding to the demand for greater accountability by promising to involve citizens in discussions about health care. As Ontario becomes the last province to move towards a regionalized system of planning, coordinating and funding local health services, it too promises to engage the public.
In October 2004, Health Minister George Smitherman announced a new “made-in-Ontario” model of localized health system coordination through the creation of Local Health Integration Networks (LHINs). The Ontario government intends to transfer the planning and funding for a significant portion of the health system to 14 LHIN area organizations over a phasing-in period that will extend until 2007. Supported by a board and professional staff, LHINs will include a local “community engagement” function.
Experience from other settings demonstrates that there isn’t a one-size-fits-all approach to community engagement. While the language varies, most public participation frameworks identify a continuum of engagement. At its simplest level, information is communicated out to the public on a need-to-know basis. At increasingly intensive levels of participation, the public may be asked for input, be consulted, be involved in partnerships with decision-makers or, on rare occasions, delegated to the principal decision-maker role itself.
So far, the Ministry of Health and Long-Term Care has not provided details on how the LHINs will fulfil their obligation to engage the community. My hope is that the ministry will move beyond generic communication strategies and direct the LHINs to actively involve consumers and their families in decision-making.
In Australia, the National Mental Health Strategy indicates that “consumer and carer input is essential if improvements in service delivery are to be achieved.”1 Australia has developed a Mental Health Statement of Rights and Responsibilities that specifies that mental health consumers and families have the right to represent their interests and contribute to the development of mental health policy and care. According to the Australian National Consumer and Carer Forum (NCCF), this directive has ensured that consumers of mental health services and families are empowered to participate in national mental health policy and planning. Conversely, observes NCCF, consumer and family participation has been less successful at the state level, where fewer policies exist to support the inclusion of mental health consumers. The lesson to be learned is that unless consumer/survivors and families are specifically recognized as important stakeholders to engage, they are less likely to become involved.
The Future Is Now
Mental health and addiction services were identified as a LHIN priority for integration by (primarily) health care providers attending a province-wide series of community consultations conducted by the Ministry of Health and Long-Term Care in late 2004. Notwithstanding the fact that the ministry’s initial outreach focused only on health care providers, I remain cautiously optimistic that consumer/survivors and families will be engaged to enhance mental health services. But a wish and a dream won’t get you there. Consumer/survivors and families must take initiative. Begin by educating yourself about what’s taking place.2
The LHIN mandate suggests two probable options for consumer and family engagement. Given that the vision for LHINs is to create a more responsive “patient-centred” system, individuals should be able to provide input about their personal experiences, preferences and satisfaction with services during planning cycles to be conducted by the LHINs. This type of input, typically acquired by collecting information through focus groups, interviews, surveys, round tables or hearings, is compiled and analysed by health planners to identify key themes and issues requiring improvement that will need to be addressed by the health service system.
Consumers and families may also be more intensely involved with the LHINs, but only if they are able to navigate the system and demonstrate leadership. What does this mean? As a former health system planner, I know the reality is that consumers and families who are able to bring forward issues on behalf of their sector (while setting aside any personal agenda), who understand the underpinnings of the health care system, who are willing to incorporate the findings of health system planning and monitoring into deliberations, who are willing to work towards solutions among interest groups, and who have extraordinary patience — these are the people most likely to be identified as key “stakeholders” and be invited to consult and/or partner with others at the decision-making forums convened by the LHINs.
However, the onus should not be entirely on consumers and family members to dig their way in. To secure their own credibility, elite institutions such as government need to ensure their policies and protocols enable authentic community engagement. For example, engaging the public in local health system planning in Ontario was a function of the former District Health Councils (DHCs), which have now been closed by the ministry in anticipation of the new LHINs. When I worked at a DHC, we consulted with stakeholders who had historically been marginalized, including mental health consumer/survivors, to identify factors that would enhance their participation in local health system planning. We committed to improve our engagement processes by developing a set of ethical planning principles to guide our work. The lessons we learned are outlined below and should be reviewed by the new LHINs.
Know Your Community
Planning organizations such as LHINs need to become knowledgeable about their diverse populations by connecting directly with stakeholders and letting them speak in their own voices. The LHINs should reach out to historically marginalized stakeholders to learn what barriers exist and what accommodation strategies are needed to ensure that special populations can participate equally in community engagement.
It will be important for the LHINs to accurately describe their authority, as well as their limitations. They will need to explain who will be involved, at what level, and how the information gathered will be used. LHINs need to be transparent as to whether they are engaging the community as a means to communicate information out, to ask for feedback, to publicly consult, or to partner in decision-making.
Support Meaningful Engagement
Meaningful community engagement is based on an informed and activated public. The design of the LHIN engagement process will be critical to enabling stakeholders to become more influential. Key components include clearly defining the role of participants; ensuring participants have the right kind and right amount of information, expressed in plain language, to confidently participate in the process; having sufficient resources to support involvement; and allowing adequate time.
Hire the Right Staff
LHINs need to recruit experienced staff who bring a range of strategies for engagement. Community engagement is a sophisticated function, requiring knowledge of system issues and strategic skills in facilitating and brokering relationships among stakeholders. The credibility of LHINs will depend on having staff with strong skills to involve the public.
Participants want to know the results of getting involved. This basic tenet is often overlooked by professionals who take the information and run. Decision-makers have an obligation to explain how the information provided by participants was used in order to arrive at decisions. Transparency and accountability are integral to the success of the engagement process.
Be Present at Other Times
Sustainable relationships are an important foundation for community engagement. Open and frequent communication promotes understanding, which increases the capacity for trust — a key component for successful engagement. LHINs need to maintain their presence and ensure their staff are delegated to community engagement on an ongoing basis.
Community engagement is a core strategy within the ministry’s plan for the new LHINs. Expect, look for, and ask for opportunities to get involved. Interested consumer/survivors and families should become familiar with opportunities for engagement. Don’t be shy about asking for what you need. Responsive and accountable governments recognize that local planning structures such as the new LHINs must accommodate the needs of the communities they are intended to serve.
Michelle Gold, MSW, MSc, is director of policy and planning at CMHA Ontario. Prior to joining CMHA Ontario, Michelle was manager of knowledge transfer at the Hamilton District Health Council.
1. Mental Health Council of Australia, “Consumer and Carer Participation Policy Template,” 2001, available at www.aasw.asn.au.
2. See the Ministry of Health and Long-Term Care website at www.health.gov.on.ca/transformation and stay up-to-date with information posted by the Canadian Mental Health Association, Ontario.
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