Engaging the public in long-term care (LTC) policymaking in Canada:

This case snapshot describes the process that resulted in the passing of legislation governing LTC homes in Ontario between 2004 and 2010, and the public engagement that occurred during this period. The Long-Term Care Homes Act, 2007 (hereafter LTCHA) was proclaimed by the Ontario government in July 2010 (Advocacy Centre for the Elderly, 2010). The LTCHA and accompanying regulations laid the foundation of the Ontario government's commitment to improve the quality of care and well-being of residents in LTC homes, strengthen transparency and accountability of the LTC homes' operation, and enhance residents’ rights (Canada NewsWire, 2009; Legislative Assembly of Ontario, 2006e). Highlights of the LTCHA include yearly inspections of LTC facilities, protections for those who report abuse or neglect of LTC home residents, the Residents’ Bill of Rights, and limiting the use of restraints, to name a few (Canada NewsWire, 2007b).

Political environment

One of the most called-for elements to improve the quality of LTC in this legislation by residents, families, and their proxies was the setting of a minimum care standard (Legislative Assembly of Ontario, 2007b). In contrast, the industry representatives framed the call as increased red tape and argued that reinstating the standard of care will eventually worsen care quality due to the paperwork burden imposed on staff (Legislative Assembly of Ontario, 2006f). Reinstating this minimum care standard was a key promise made by the Liberal Party in the 2003 election when they were in opposition (Canada NewsWire, 2007a; Legislative Assembly of Ontario, 2006a). The Liberals were seeking to pass the Act before an upcoming provincial election. The Health Minister at the time, George Smitherman, promised that the government would put a minimum standard of care of 2.25 hours in place within three months of the next government taking office (Legislative Assembly of Ontario, 2006a; Toronto Star, 2007). However, the minimum care standard was not included in the LTCHA (2007) until its implementation in July 2010. The public’s disappointment deepened as a minimum care level was not included in the proposed legislation, despite the government’s promise (National Union of Public and General Employees, 2007). Seniors and health advocates strived to put this topic on the public agenda as the election approached (Canada NewsWire, 2008a, 2008b). Policymakers from opposition parties echoed this call and tried to block the Bill from being fast-tracked by requesting more public engagement (Legislative Assembly of Ontario, 2006c). Most active, in particular, was the NDP which held considerable bargaining power as the Liberals could be reduced to a minority government (Campbell, 2007).

Public Engagement

The public was primarily engaged in two key ways: i) by providing input to government-commissioned reports and ii) by contributing directly to informing the legislative process. A number of government reports were commissioned throughout the development process, in the early stages to suggest the establishment of LHTCA (Sonnenberg, 2010), and in the later stages that informed the details of the Act such as the vision of care quality (Ministry of Health and Long-Term Care, 2008) and quality indicators (Sharkey, 2008). The public was also engaged in the legislative process itself through participation in public hearings on the draft LTCHA (presentations and or written submissions) (Advocacy Centre for the Elderly, 2007; Canada NewsWire, 2007b; Legislative Assembly of Ontario, 2007a), and at the regulation drafting stage (Canada NewsWire, 2009; Sonnenberg, 2010).

Rationales/Goals: Many of the officially reported rationales in government-commissioned reports reflected the traditional goals of gathering a broad range of inputs from various sector stakeholders as a form of policy advisory input (Smith, 2004). Meanwhile, PE in the legislative process appeared to be conducted for other reasons. Public hearings on the draft LTCHA were initiated at the request of MPPs from opposition parties and advocates in order to have reasonable opportunities to review the legislation (Legislative Assembly of Ontario, 2006b; Ontario Health Coalition, 2007; Whitwham, 2006) and to prevent the Bill from being fast-tracked (Legislative Assembly of Ontario, 2006d, 2006e). In drafting regulations, the goals of PE were to not only enhance the legitimacy and transparency of the regulation development process but also to increase shared ownership and buy-in to the new Act (Sonnenberg, 2010). Afterwards, the government provided PE opportunities in the drafting of regulations under Section 184 of the LTCHA that sets the obligations for public consultation prior to the enactment of initial regulations (ibid.).

Participants and recruitment methods: Multiple stakeholders were engaged in the PE initiatives. This includes not only individuals and groups representing and or advocating for the rights of residents, families and caregivers, but also medical providers and their unions, academic experts, and LTC home operators. While all the initiatives were discrete events that differed in terms of the timing of the engagement implemented, there was considerable overlap between the participating organizations and individuals affiliated with the organizations. The most frequently involved organizations were: Advocacy Centre for the Elderly, CUPE Ontario, Ontario Association of Residents’ Councils, Ontario Health Coalition, and the Ontario Long-Term Care Association. In the government-commissioned reports, lay perspectives (i.e. LTC home residents and families) were not distinguished from other stakeholder inputs despite known differences in their positions, for example, on the topic of setting a minimum care standard (Ministry of Health and Long-Term Care, 2008; Sharkey, 2008; Smith, 2004). Many PE initiatives conducted in this process did not clearly mention what recruitment methods were used, raising questions about how the participants were recruited for the initiatives. The majority of PE in the legislative process was formally organized using self-selection methods, open to all interested parties wishing to weigh in on proposed legislation. However, it was combined with an invitation method that restricted the number who were given oral presentations during the public hearings; these oral presentation slots were prioritized and selected by relevant officials (Legislative Assembly of Ontario, 2007a). Notably, PE in the regulation drafting stage was restricted to certain organizations and individuals using the targeted invitation method (Sonnenberg, 2010).

Type and format of PE: Most PE initiatives implemented throughout the process were limited to feedback and consultation-style engagement. All initiatives were conducted as one-off activities. The PE initiatives described in government-commissioned reports were, for the most part, not documented in detail, although a strong emphasis was placed on their engagement activities. Based on a review of the reports’ contents, most PE activities were consultative where participants were asked to answer broadly-designed questions around themes suggested by engagement sponsors (National Union of Public and General Employees, 2007; Sharkey, 2008). PE initiatives were carried out through either in-person meetings formats (e.g. anonymous visits to LTC homes, meetings with key stakeholder organizations and individuals active in the LTC community etc.) or document submissions within relatively short timelines (e.g. carried out for two months (Ministry of Health and Long-Term Care, 2008; Smith, 2004) to seven months (Sharkey, 2008). PE in the legislative process mostly occurred through feedback where the agenda for seeking public input was narrowly framed (e.g. the public was engaged in providing comments on the proposed draft Bill or Regulation). PE in regulation drafting was carried out through an online survey and 2-day stakeholder forums where participants were invited to help refine the regulation based on a set of focused themes selected by engagement sponsors (Sonnenberg, 2010). A government document noted that this approach was used to ensure the discussion was specifically linked to the priorities of the regulatory policy development process of the time rather than to allow for more free-flowing comments (ibid.).

This case snapshot describes Ontario’s COVID-19 pandemic response in the LTC sector from the beginning of the pandemic until April 2021, when the third provincial state of emergency was declared, and the public engagement that occurred during this period. As COVID-19 cases spread through the LTC sector, it quickly became the epicentre of the province’s pandemic response. In the first wave of the COVID-19 pandemic (March to August 2020), more than one-third of all Ontario LTC homes reported an outbreak, resulting in 6,036 resident cases and 1,815 resident deaths. LTC home residents accounted for 64.5 percent of the COVID-19 deaths in Ontario (Stall et al., 2021). The disproportionate mortality in LTC homes continued in the second wave beginning in September 2020, resulting in 3,211 resident deaths, totalling 60.7% of all Ontario COVID-19 fatalities (as of January 14, 2021) (ibid.). This case snapshot describes Ontario’s COVID-19 pandemic response in the LTC sector from the beginning of the pandemic until April 2021, when the third provincial state of emergency was declared.

Political environment

The Ontario government faced an accountability issue due to its failure to prioritize long-term care and protect residents and staff members in the LTC homes during emergency planning despite ample evidence that long-term care was at risk (Marrocco et al., 2021). Following the release of a military report revealing the horrific condition of LTC homes, public outrage soared, and unprecedented demands for a fix in the LTC sector emerged (Office of the Premier, 2020). There was a common belief that the disproportionate outbreak was, in fact, a preventable tragedy and that it was time to fix the long-neglected deficiencies in the LTC sector (MACLACHLAN, 2021).

Nonetheless, the surrounding political atmosphere allowed the government to avoid some of the blame and continue to exercise its power as intended. Thanks to a broadly shared sentiment that this was an ‘unprecedented’ and ‘urgent’ situation, the government’s claim that ‘we simply cannot afford to wait’ successfully justified its policy approach (Toronto Star, 2020). The recent government structure change (i.e. the separation of the Ministry of Health and Long-Term Care and the creation of Ontario Health replacing the roles of Local Health Integration Networks) also contributed to this atmosphere by bringing unclear lines of accountability to the public (Office of the Auditor General of Ontario, 2021; Ontario’s Long-Term Care COVID-19 Commission, 2020c). Furthermore, public calls for action at the system level were constrained due to the demands concentrated at the facility level (e.g. visiting policies, meals for residents, staff shortages, etc.) despite some grass-roots level activities that criticized the government's failure in responding to the COVID-19 in a timely and effective way (Ontario Health Coalition, 2020a, 2020b; Ontario’s Long-Term Care COVID-19 Commission, 2021a). Every LTC facility had a different level of emergency preparedness and response, which resulted in the need for localized responses to the fight against COVID-19 (Ho, 2020).

Public Engagement

The public was primarily engaged in two ways: 1) through the Health Command Table and its sub-tables, a provincial emergency response structure established in February 2020, and 2) through the work of Ontario’s Long-Term Care COVID-19 Commission (hereafter Commission). The Health Command Table and its sub-tables were established to offer a single point of oversight for the health response to COVID-19 that would span multiple workstreams, including immediate emergency response, outbreak control, and preparation for future waves (Cabinet Office & Ministry of Health, 2021). Meanwhile, the Commission was established in July 2020 to investigate what caused the disproportionate COVID-19 outbreak in LTC facilities and how it affected residents, families, and staff. It also aimed to give suggestions to prevent future pandemics in LTC facilities (Ontario’s Long-Term Care COVID-19 Commission, 2020a, 2021c). There were significant differences in the extent and manner in which PE was implemented in Ontario’s emergency response structure (i.e. the Health Command table and its sub-tables) and the work of the Commission.

Rationales/Goals: The rationales of PE in the emergency response structure were to support the implementation of Cabinet directives and facilitate connections across various stakeholders in a rapid and effective manner (Cabinet Office & Ministry of Health, 2021; Office of the Auditor General of Ontario, 2020). Given the urgency, engaging with diverse stakeholders at the Health Command table and its sub-tables was critical to organizing discussions and supporting the execution of decisions across and outside government as a single point of reference (ibid.). Meanwhile, the Commission believing that a comprehensive understanding acquired from various perspectives was necessary for accomplishing its mandate, thus endeavoured to gather a wide range of public input, as observed in its guiding principles.

Participants and recruitment methods: The membership in the emergency response structure appears to be relatively closed. The exclusivity seemed to be attributable to its recruitment strategy, which was based on targeted invitations. There was no open nomination and self-selection found in recruiting participants to sit at the tables. The Commission, on the other hand, met various stakeholders, including residents, families, their advocates (e.g. residents’ councils and family councils from many LTC homes across the province), LTC home staff, LTC facility operators, researchers in a variety of fields, and people from organizations representing the interests of various stakeholders mentioned (Marrocco et al., 2021). Notably, the Commission showed remarkable effort to communicate directly with those affected by the pandemic outbreak, rather than relying on intermediary institutions (Ontario’s Long-Term Care COVID-19 Commission, 2021b). Along with the targeted invitation, the Commission used a self-selection approach based on multiple channels for the public to voluntarily provide inputs in their investigation (Marrocco et al., 2021). The Commission ensured that the public had access to all information it was able to share, such as the mandate, terms of reference, meeting transcripts, and slide decks used during the presentation, by posting the information on its official website (Marrocco et al., 2020).

Type and format of PE: The PE activities in Ontario’s COVID-19 response structure appeared to take place in the format of consultation where diverse players could express opinions and seek cooperation on the agenda set by the government (Ontario’s Long-Term Care COVID-19 Commission, 2020b). However, some participants noted that the meetings were limited to mere information sharing for governments’ directives despite the format of consultation. The Auditor General Report revealed that the meetings of the Health Command Table were rarely effective for clear discussions and providing advice since it was held by teleconference until July 2020 occasionally with as many as 90 participants (Crawley, 2020; Office of the Auditor General of Ontario, 2021). The meetings were ongoing initiatives despite the time duration of each sub-table in Ontario’s COVID-19 response structure varied. The PE initiatives conducted for the Commission’s investigation similarly took the form of consultation and information sharing. Interactive engagement was enhanced through group meetings using Zoom, and the Commissioners posed varied questions based on the perspectives represented by the participants in order to address multi-aspects of the LTC situation. Those who did not wish to participate in meetings also could express their opinions via written submission to a designated email address or a message on a toll-free phone line (Marrocco et al., 2021). The dedicated website had an information-sharing function regarding the progress of the Commission’s investigation and relevant materials (Marrocco et al., 2020), allowing the public to track the Commission’s progress in real-time and, more importantly, form their own judgements about what the Commissioners were being told (Marrocco et al., 2021).

This case snapshot describes the development of national LTC standards from 2021 to 2022 and the public engagement that occurred during this period. Prime Minister Justin Trudeau dismissed the proposal to impose national standards across the nation and instead launched new efforts in March 2021 to establish practical LTC standards, led by the Health Standards Organization (HSO) and the Canadian Standards Association Group (CSA) (MacCharles, 2021). HSO’s National Long-Term Care Services standard (CAN/HSO21001:2022— Long-Term Care Services) is a revision of the organization’s current Long-Term Care Services standard (HSO 21001:2020 – Long-Term Care Services), and it will be used in future LTC accreditation programs across the country (HSO, 2021a). It looks at how existing standards for safe and high-quality care could be improved to fix the deficiencies in the LTC sector highlighted during the COVID-19 pandemic (HSO, n.d.-a). At the same time, CSA Group works on developing the National Standard of Canada for Operation and Infection Prevention and Control of Long-Term Care Homes (CSA Z8004), which will focus on topics such as heating, ventilation, HVAC, plumbing, etc (CSA Group, 2021a).

Political environment

LTC falls under the jurisdiction of the provinces and territories which means the federal power in the LTC sector is limited (Estabrooks et al., 2020). In this regard, the pursuit of enforceable national LTC standards is a policy solution that requires greater involvement from the federal government given the institutional system where provincial governments have primary responsibility for LTC (Tuohy, 2020). Despite announcing the intention to set national standards in the September 2020 Throne Speech, Prime Minister Justin Trudeau appeared lukewarm about overcoming the barriers needed to pursue this policy direction. He often stated that the federal government would respect provincial powers and responsibilities and avoid wading into specifics (Bryden, 2020; Osman, 2021a). Meanwhile, there was a growing consensus that legislating an enforceable national standard is unlikely to be feasible or effective given Canada’s federalism and the different capacities of provinces and territories in following the common criteria. Accordingly, the focus on the discussion over potential policy solutions shifted to using the health transfer, which is already well established in the Canadian physician and hospital sectors, along with accreditation. Eventually, the federal government dismissed the proposal to establish a national standard and delegated the work to accreditation companies. By doing so the federal government was able to save itself from the challenges of obtaining reluctant Premiers’ buy-ins and overcoming institutional barriers (Osman, 2021b).

Public Engagement

As a standards development organization (SDO), HSO and CSA need to adopt a rigorous development process (i.e. The Requirements & Guidance for SDOs) set by the Standards Council of Canada (SCC) (CSA Group, 2021a; Standards Council of Canada, 2019). Engaging with stakeholders appears to be one of the important aspects of the process (ibid.). Both companies have demonstrated remarkable efforts to engage with diverse stakeholders in a comprehensive way that went beyond the SCC criteria. Led by Dr. Samir Sinha, director of Geriatrics at Mount Sinai and the University Health Network Hospitals in Toronto, HSO has brought and continued to bring the voice of LTC home residents, families and Canada's LTC workforce over 21 months of standard development (Family Councils Ontario, 2021). CSA’s PE initiative took a similar approach. Led by Dr. Alex Mihailidis, Scientific Director and CEO, AGE-WELL NCE, the CSA group conducted various PE activities that exceeded the SCC requirements (CSA Group, 2022).

Rationales/Goals: The Requirements & Guidance for SDOs are the baselines of the LTC standard development. From its consensus requirements, the rationales/ goals of engagement are mostly in ensuring a balanced representation of interests so that no single category of interest can dominate the standard development procedures (Standards Council of Canada, 2019). The CSA group explicitly mentioned its aim of the public consultation process as reaching stakeholders across the country to collect their input on what the new standard should address (CSA Group, 2022). Likewise, HSO noted a goal of its PE activities ranging from gathering inputs to tailoring the scope and contents of the new standard (HSO, n.d.-a). This rationale was consistently applied when it came to engaging with marginalized populations. HSO claimed that meaningful inclusion necessitates special effort to ensure all voices are heard, knowing that certain groups have been historically excluded from decision-making and equitable distribution of resources (HSO, 2021b). Likewise, the CSA group noted that it is essential to identify and address barriers to care experienced by the marginalized population due to stigma and discrimination (CSA Group, 2022).

Participants and recruitment methods: The Requirements & Guidance for SDOs broadly defines a stakeholder as “A party that has an interest in a standard, and can either affect or be affected by the standard” (Standards Council of Canada, 2019, p.8). That is, a broad range of people at stake could be involved in the engagement activities for developing LTC standards, such as residents, families, frontline workers, LTC management and administration, researchers, and the general public (ibid.). Accordingly, both HSO and CSA engaged with diverse stakeholders noted above. Moreover, both groups strived to include populations that are frequently left out of decision-making (e.g. Indigenous communities, Francophone communities, 2SLGBTQI+) (CSA Group, 2022; HSO, n.d.-c). HSO started its work by establishing a technical committee through open nomination. Over a quarter of the 32 members of the committee appointed were LTC residents and family members, and a third represented frontline workers with firsthand experience of care delivery (HSO, n.d.-c). For subsequent one-time engagement initiatives, (e.g. surveys, consultation workbooks, and virtual town hall meetings), self-selection was used. Similarly, CSA also mainly used the self-selection method (e.g. group consultations, surveys) along with appointments (e.g. Technical Subcommittee, Advisory Panel, and Resident and Family Centred Working Group) (CSA Group, 2021b).

Type and format of PE: Both CSA and HSO conducted public participation in various types (deliberation, consultation, and feedback) and formats (ongoing, one-off). Detailed PE activities ranged from participation in technical committees or other governance structures as members, online surveys, virtual town hall meetings, and public review of the draft standard (expected) (CSA Group, 2022; HSO, n.d.-b). Both companies commenced their work by establishing a technical committee to oversee the drafting, approving, and managing the technical content of a standard in accordance with SDO policies and procedures. PE in this structure was an ongoing activity and given their mandate, was more likely a deliberation-style of engagement. Soon after the committee was formed, HSO conducted an online survey (from March to July 2021) to kick off the development process, which was closed to a consultation type of engagement (HSO, n.d.-b). Building on the feedback from the survey, following PE initiatives such as consultation workbooks and virtual town hall meetings, were conducted in consultation format (HSO, n.d.-b, 2021b). Lastly, the public review of a draft standard, which will be released in Fall 2022, will be in the format of feedback, in which respondents will be able to express their views on relatively narrowly framed issues (HSO, n.d.-a). The CSA Group has demonstrated engagement efforts in a similar vein. Soon after the establishment of the governance structure, the CSA group hosted several one-time engagement activities – six consultation sessions and three online surveys - based on a combination of consultation and feedback style engagement (CSA Group, 2022).

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