Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.

BACKGROUND: With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities. METHODS: A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as "partner" or "advisor". RESULTS: A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare. CONCLUSIONS: There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution.

Priority measures for publicly reporting primary care performance: Results of public engagement through deliberative dialogues in 3 Canadian provinces.

OBJECTIVE: While public reporting of hospital-based performance measurement is commonplace, it has lagged in the primary care sector, especially in Canada. Despite the increasing recognition of patients as active partners in the health-care system, little is known about what information about primary care performance is relevant to the Canadian public. We explored patient perspectives and priorities for the public reporting of primary care performance measures. METHODS: We conducted six deliberative dialogue sessions across three Canadian provinces (British Columbia, Ontario, Nova Scotia). Participants were asked to rank and discuss the importance of collecting and reporting on specific dimensions and indicators of primary care performance. We conducted a thematic analysis of the data. RESULTS: Fifty-six patients participated in the dialogue sessions. Measures of access to primary care providers, communication with providers and continuity of information across all providers involved in a patient's care were identified as the highest priority indicators of primary care performance from a patient perspective. Several common measures of quality of care, such as rates of cancer screening, were viewed as too patient dependent to be used to evaluate the health system or primary care provider's performance. CONCLUSIONS: Our findings suggest that public reporting aimed at patient audiences should focus on a nuanced measure of access, incorporation of context reported alongside measurement that is for public audiences, clear reporting on provider communication and a measure of information continuity. Participants highlighted the importance the public places on their providers staying up to date with advances in care.

Understanding the Role of Values in Health Policy Decision-Making From the Perspective of Policy-Makers and Stakeholders: A Multiple-Case Embedded Study in Chile and Colombia.

BACKGROUND: Chile and Colombia are examples of Latin American countries with health systems shaped by similar values. Recently, both countries have crafted policies to regulate the participation of private for-profit insurance companies in their health systems, but through very different mechanisms. This study asks: what values are important in the decision-making processes that crafted these policies? And how and why are they used? METHODS: An embedded multiple-case study design was carried out for 2 specific decisions in each country: (1) in Chile, the development of the Universal Plan of Explicit Entitlements -AUGE/GES - and mandating universal coverage of treatments for high-cost diseases; and (2) in Colombia, the declaration of health as a fundamental right and a mechanism to explicitly exclude technologies that cannot be publicly funded. We interviewed key informants involved in one or more of the decisions and/or in the policy analysis and development process that contributed to the eventual decision. The data analysis involved a constant comparative approach and thematic analysis for each case study. RESULTS: From the 40 individuals who were invited, 28 key informants participated. A tension between 2 important values was identified for each decision (eg, solidarity vs. individualism for the AUGE/GES plan in Chile; human dignity vs. sustainability for the declaration of the right to health in Colombia). Policy-makers used values in the decisionmaking process to frame problems in meaningful ways, to guide policy development, as a pragmatic instrument to make decisions, and as a way to legitimize decisions. In Chile, values such as individualism and free choice were incorporated in decision-making because attaining private health insurance was seen as an indicator of improved personal economic status. In Colombia, human dignity was incorporated as the core value because the Constitutional Court asserted its importance in its use of judicial activism as a check on the power of the executive and legislative branches. CONCLUSION: There is an opportunity to open further exploration of the role of values in different health decisions, political sectors besides health, and even other jurisdictions.

Understanding health professional role integration in complex adaptive systems: a multiple-case study of physician assistants in Ontario, Canada.

BACKGROUND: To meet the complex needs of healthcare delivery, the Ministry of Health and Long Term Care (MOHLTC) introduced Physician Assistants (PAs) into the Ontario health care system in 2006 with the goal of helping to increase access to care, decrease wait times, improve continuity of care and provide a flexible addition to the healthcare workforce. The characterization of healthcare organizations as complex adaptive systems (CAS) may offer insight into the relationships and interactions that optimize and restrict successful PA integration. The aim of this study is to explore the integration of PAs across multiple case settings and to understand the role of PAs within complex adaptive systems. METHODS: An exploratory, multiple-case study was used to examine PA role integration in four settings: family medicine, emergency medicine, general surgery, and inpatient medicine. Interviews were conducted with 46 healthcare providers and administrators across 13 hospitals and 6 family medicine clinics in Ontario, Canada. Analysis was conducted in three phases including an inductive thematic analysis within each of the four cases, a cross-case thematic analysis, and a broader, deductive exploration of cross-case patterns pertaining to specific complexity theory principles of interest. RESULTS: Forty-six health care providers were interviewed across 19 different healthcare sites. Support for PA contributions across various health care settings, the importance of role awareness, supervisory relationship attributes, and role vulnerability are interconnected and dynamic. Findings represent the experiences of PAs and other healthcare providers, and demonstrate how the PAs willingness to work and ability to build relationships allows for the establishment of interprofessional, collaborative, and person-centered care. As a self-organizing agent in complex adaptive systems (i.e., health organizations), PA role exploration revealed patterns of team behavior, non-linear interconnections, open relationships, dynamic systems, and the legacy of role implementation as defined by complexity theory. CONCLUSIONS: By exploring the role of PAs across multiple sites, the complexity theory lens concurrently fosters an awareness of emerging patterns, relationships and non-linear interactions within the defined context of the Ontario healthcare system. By establishing collaborative, interprofessional care models in hospital and community settings, PAs are making a significant contribution to Ontario healthcare settings.

Supporting women at average risk to make informed decisions about mammography when there is no "right" answer: a qualitative citizen deliberation study.

BACKGROUND: Women are encouraged to make informed choices about mammography screening that align with their values and preferences, yet information materials developed by screening programs rarely provide complete, balanced information about screening. Through a series of deliberations with Ontario citizens, we elicited perspectives on materials developed by screening programs to support informed decision-making. METHODS: We held 4 deliberative engagement events with citizens to discuss the current evidence about mammography and informed decision-making for the general population (i.e., women not at high risk) in the context of organized screening programs. Participants reviewed and provided feedback on the educational materials currently produced by screening programs in 8 provinces (British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Quebec, Nova Scotia and Newfoundland and Labrador) and 2 territories (Yukon Territory and Northwest Territory) and identified the key features that should guide the design of these materials to optimally support informed decision-making. RESULTS: In general, participants viewed the educational materials as insufficient to support informed decision-making. They identified the following key features of optimal educational materials: they should be accessible, complete and accurate, and provide information on both benefits and risks of screening in a comprehensive, easy-to-understand manner. Information materials should evoke the trust of the reader, and they should be consistent across Canada. INTERPRETATION: Canadian women have insufficient access to reliable information sources and complete evidence about mammography screening, and, without this information, they are unable to make fully informed decisions. Canadian breast screening programs must take steps to improve the information shared with women to support informed decision-making that aligns with women's values and preferences.

Addressing the affordability of cancer drugs: using deliberative public engagement to inform health policy.

BACKGROUND: Health system expenditure on cancer drugs is rising rapidly in many OECD countries given the costly new treatments and increased rates of use due to a growing and ageing population. These factors put considerable strain on the sustainability of health systems worldwide, sparking public debate among clinicians, pharmaceutical companies, policy-makers and citizens on issues of affordability and equity. We engaged Canadians through a series of deliberative public engagement events to determine their priorities for making cancer drug funding decisions fair and sustainable in Canada's publicly financed health system. METHODS: An approach to deliberation was developed based on the McMaster Health Forum's citizen panels and the established Burgess and O'Doherty model of deliberative public engagement. Six deliberations were held across Canada in 2016. Transcripts were coded in NVivo and analysed to determine where participants' views converged and diverged. Recommendations were grouped thematically. RESULTS: A total of 115 Canadians participated in the deliberative events and developed 86 recommendations. Recommendations included the review and regular re-review of approved drugs using 'real-world' evidence on effectiveness and cost-effectiveness; prioritisation of treatments that restore patients' independence, mental health and general well-being; ensuring that decision processes, results and their rationales are transparent; and commitment to people with similar needs receiving the same care regardless of where in Canada they live. CONCLUSIONS: The next steps for policy-makers should be to develop mechanisms for (1) re-reviewing effectiveness and cost-effectiveness data for all cancer drugs; (2) making disinvestments in cancer drugs that satisfy requirements relating to grandfathering and compassionate access; (3) ensuring fair and equitable access to cancer drugs for all Canadians; and (4) fostering a pan-Canadian approach to cancer drug funding decisions.

'I just want to be able to make a choice': Results from citizen deliberations about mammography screening in Ontario, Canada.

Despite Canada's long history with mammography screening, little is known about citizens' perspectives about mammography and how best to support women to make informed choices about screening. To address this gap, a series of four citizen deliberation events were held in 2015-16 in Ontario, a Canadian province with an organized population-based breast screening program in place since 1990. Forty-nine individuals participated in four citizen panels, each comprising an information session highlighting the evidence about mammography, and large- and small-group deliberations about approaches to support informed decision making for screening. Following their engagement with the research evidence about mammography, participants expressed concern about their lack of full awareness of the risks and benefits and a strong desire for choice when it comes to screening. To support informed choice, mammography programs need to reflect the values of information sharing, trust and transparency, financial accountability, and allow for personal interactions and shared decision-making. Citizens are looking for balanced information about the risks and benefits of screening presented in an easy to understand, comprehensive, and transparent manner. Primary health care providers and organized screening programs are important sources of information about mammography and must be vigilant in their efforts to support informed decision-making in this area by ensuring that the information materials they are using are balanced and reflect current evidence.

Uncertain times: A survey of Canadian women's perspectives toward mammography screening.

Evolving scientific evidence about mammography has raised new questions about the net benefits of organized screening, yet gaps remain about women's current screening practices, knowledge, attitudes and values toward screening to support informed decision making in this area. We addressed this gap through an online survey of 2000 screen-eligible women from Ontario, Canada in January 2016. Likert-scaled and categorical questions were used to collect information about screening practices, knowledge of benefits and risks of screening and underlying attitudes and values toward screening. Results for all responses were summarized using descriptive statistics. Comparison of results between ever screened versus never screened respondents was performed using chi-squared tests. Most women felt informed about screening yet had doubts about how informed their decisions were. They were more confident in their knowledge of the benefits than the risks which aligned with the emphasis given to benefits in discussions with health care providers. The benefits of screening were linked with lowered anxiety about breast cancer. The never screened were less likely to overstate the benefits of screening, more likely to give weight to the risks, and less likely to report anxiety or worry about breast cancer. Findings highlight the need for improved communication strategies and decision supports that emphasize the provision of current, balanced information about the benefits and risks of screening, both at the population-level (through mass media) and within patient-provider interactions. Sensitivity to the psychosocial factors that shape women's attitudes toward mammography screening should be central to any strategy.

Framing incremental expansions to public health insurance systems: the case of Canadian pharmacare.

Canada is the only country in the world to offer universal comprehensive public health insurance that excludes outpatient prescription medicines. Few scholars have attempted to explain this policy puzzle. We study media coverage of prescription drug financing from 1990 to 2010 to elucidate how the policy problem and potential solutions have been framed in media discourse and identify the actors that have dominated media texts. We confirm previous analyses that have revealed the significant role played by policy elites in media coverage of health reform debates. We also find that proposed expansions to public coverage are presented as a financial liability that could "crowd out" the existing (and popular) public insurance program. Within the context of a predominantly public funded system, framing of incremental expansion reorients away from values and toward discourse related to costs--both of the current system and of potential reforms. This may reflect a strategic narrative used by actors to maintain "silos of values" for coverage for prescription medicines versus those for other services. This has significant implications for the motivation for reform among the electorate and politicians alike, and for the extent to which policy developments, if they occurred, would legitimately reflect societal values for health financing.

Enhancing citizen engagement in cancer screening through deliberative democracy.

Cancer screening is widely practiced and participation is promoted by various social, technical, and commercial drivers, but there are growing concerns about the emerging harms, risks, and costs of cancer screening. Deliberative democracy methods engage citizens in dialogue on substantial and complex problems: especially when evidence and values are important and people need time to understand and consider the relevant issues. Information derived from such deliberations can provide important guidance to cancer screening policies: citizens' values are made explicit, revealing what really matters to people and why. Policy makers can see what informed, rather than uninformed, citizens would decide on the provision of services and information on cancer screening. Caveats can be elicited to guide changes to existing policies and practices. Policies that take account of citizens' opinions through a deliberative democracy process can be considered more legitimate, justifiable, and feasible than those that don't.

Media Hyping and the "Herceptin Access Story": An Analysis of Canadian and UK Newspaper Coverage.

In May 2005, preliminary trial results pronouncing the effectiveness of Herceptin (trastuzumab) for treatment of early-stage breast cancer were disseminated at a high-profile scientific meeting. Herceptin was subsequently approved for use in the public healthcare systems of Canada and the United Kingdom, although the differences between the two decision timelines were stark. The authors compared UK and Canadian newspaper coverage of the Herceptin story to assess how it may have been "hyped" in each country. They analyzed a diverse sample of newspapers and coded clippings for reporters' framing of the drug's efficacy, costs and funding approval process. Canadian news coverage preceded formal publication of the trial results, while UK coverage mirrored major national events. Reporters in both countries used predominantly individualistic perspectives and framed Herceptin's efficacy in salutary terms. Framing of costs was more neutral in Canadian than in UK newspapers. Funding approval framing focused on inequitable access in the UK and timeliness in Canada. News coverage of drug access stories varies across jurisdictions in terms of intensity and some aspects of framing. Such variations likely reflect different journalistic practices and dominant political rhetoric. Greater attention should be given to the role that news coverage of drug access plays in shaping public opinion and policy action, especially when this coverage precedes scientific debate.

Public participation in health care priority setting: A scoping review.

OBJECTIVE: While much literature has debated public engagement in health care decision-making, there is no consensus on when public engagement should be sought and how it should be obtained. We conducted a scoping review to examine public engagement in one specific area: priority setting and resource allocation. METHOD: The review drew upon a broad range of health and non-health literature in an attempt to elicit what is known and not known on this topic, and through this to outline any guidance to assist decision-makers and identify where efforts for future research should be directed. RESULTS: Governments appear to recognize benefits in consulting multiple publics using a range of methods, though more traditional approaches to engagement continue to predominate. There appears to be growing interest in deliberative approaches to public engagement, which are more commonly on-going rather than one-off and more apt to involve face-to-face contact. However, formal evaluation of public engagement efforts is rare. Also absent is any real effort to demonstrate how public views might be integrated with other decision inputs when allocating social resources. CONCLUSION: While some strands can be taken to inform current priority setting activity, this scoping review identified many gaps and highlights numerous areas for further research.

What does it mean to trust a health system? A qualitative study of Canadian health care values.

OBJECTIVES: We used a qualitative empirical study of Canadians' values toward their health system to develop more meaningful conceptualizations of trust and health systems that can inform the pursuit of more trustworthy health systems. METHODS: We convened nine focus groups in three Canadian cities in 2002 and 2004 in conjunction with a national public opinion telephone survey of Canadians' attitudes and values toward their health system. Health system trust emerged as a significant theme in focus group discussions and was investigated using a modified grounded theory approach. FINDINGS: Respondents construct cleavages and alliances to position themselves in relation to different features of the trusted health system. The health system and Canadian Medicare are identified sources of trust just as are individual health care providers. Core to the trust relationship is the experience of vulnerability which provides the impetus for placing trust (in providers, governments and health systems) or seeds distrust, mistrust and resilience in the same. CONCLUSIONS: We offer a more robust conceptualization of what it means to trust a health system. Policy maker efforts to intervene to restore lost trust could usefully be informed by these findings.

Mental health service delivery in Ontario, Canada: how do policy legacies shape prospects for reform?

Like many jurisdictions, mental health policy-making in Ontario, Canada, has a long history of frustrated attempts to move from a hospital and physician-based tradition to a coordinated system with greater emphasis on community-based mental health care. This study examines policy legacies associated with the introduction of psychiatric hospitals in the 1850s and of public health insurance (medicare) in the 1960s in Ontario; and their effect on subsequent mental health reform initiatives using a qualitative case study approach. Following Pierson (1993) we capture the resource/incentive and interpretive effects of prior policies on three groups of actors: government elites, interests, and mass publics. Data are drawn from academic and policy literature, and key informant interviews. The findings suggest that psychiatric hospital policy produced important policy legacies which were reinforced by the establishment of Canadian medicare. These legacies explain the traditional difficulty in achieving mental health reform, but are less helpful in explaining recent promising developments that support community-based care. Current reform of the Ontario health system presents an opportunity to overcome several of these legacies. Analysis of policy legacies in other countries which had an asylum tradition may help to explain the similarities and differences in their subsequent paths of mental health reform.

Bringing 'the public' into health technology assessment and coverage policy decisions: from principles to practice.

Those making health care coverage decisions rely on health technology assessment (HTA) for crucial technical information. But coverage decision-making, and the HTA that informs it, are also inherently political. They involve the values and judgments of a range of stakeholders as well as the public. Moreover, governments are politically accountable for their resource allocation decisions. Canadian policy makers are at an early stage in the design of legitimate mechanisms for the public to contribute to, and to be apprised of, HTA and coverage decisions. As they consider the options, questions arise about whom to involve (e.g., which publics), how to engage them (e.g., through what public involvement or accountability mechanisms), and for what purpose (e.g., to inform the public of decisions and their rationales, or to have the public directly affect those decisions). Often key concepts, such as the difference between public accountability and public participation, are not well articulated or distinguished in these debates. Guidance is needed regarding both rationales and methods for involving the public in HTA and technology coverage decisions. We offer a framework that clearly distinguishes specific roles for the public, and relates them to several layers of policy analysis and policy making where 'the public' may engage in different tasks. The framework offers a menu of choices for policy makers contemplating changes to public involvement, as well as a model that can be used to characterize and analyze different approaches across jurisdictions.

Knowledge into action? understanding ideological barriers to addressing health inequalities at the local level.

The objective of this study was to explore the presence of ideological barriers to addressing local health inequalities in Hamilton, Ontario, Canada. A survey of active citizens revealed low levels of awareness of the social determinants of health (SDOH) framework, and some incongruence between understanding and attitudes towards the SDOH. Support for addressing health inequalities was associated with awareness of the SDOH framework, liberal value-systems, and a cluster of socio-demographic characteristics. Liberal leaning participants were also more politically active than their conservative counterparts. Ideological barriers included lack of SDOH awareness, narrow understandings of the relative influences of the SDOH, resistance to de-prioritizing healthcare, and conservative values. Advancement of a SDOH policy agenda should incorporate wider dissemination efforts to citizens and local service providers to increase support for this framework, and utilization of existing support and political engagement from liberal-leaning demographics.

From rhetoric to reality: including patient voices in supportive cancer care planning.

OBJECTIVE: To explore the extent and manner of patient participation in the planning of regional supportive care networks throughout the province of Ontario. We consider the disconnect between the rhetoric and reality of patient involvement in network planning and co-ordination. CONTEXT: In 1997, the Province of Ontario, Canada, established a new, regionalized cancer care system. By transferring responsibility to the regional level and to networks, the architects of the new provincial system hoped to broaden participation in decision making and to enhance the responsiveness of decisions to communities. RESEARCH APPROACH: Through a qualitative, multiple case study approach we evaluated the processes of involving patients in network development. In-depth, semi-structured interviews and document analysis were complemented by observations of provincial meetings, regional council and network meetings. RESULTS: The network development processes in the three case study regions reveal a significant gap between intentions to involve patients in health planning and their actual involvement. This gap can be explained by: (i) a lack of clear direction regarding networks and patient participation in these networks; (ii) the dominance of regional cancer centres in network planning activities; and, (iii) the emergence of competing provincial priorities. DISCUSSION: These three trends expose the complexity of the notion of public participation and how it is embedded in social and political contexts. The failed attempt at involving patients in health planning efforts is the result of benign neglect of public participation intents and the social and political contexts in which public and patient participation is meant to occur.

Canadians confront health care reform.

In 2002 Canadians were less anxious about the state of their health care system than they were a few years earlier, when perceptions peaked that the system needed major reform. They expressed strong support in 2002 for maintaining the status quo on health care financing (that is, no user fees and no two-tier care) within the traditional domains of physician and hospital care. But they appeared more receptive to two-tier care and for-profit delivery for the newer and rapidly expanding domains of home care and high-tech care.

The policy analysis of 'values talk': lessons from Canadian health reform.

Despite widespread recognition of the importance of values, decision makers and stakeholders in health policy appear to disagree fundamentally over what 'values' essentially are. Hidden dissent about the nature of values can confuse policy deliberations. This study investigates empirically the following two questions: (1) what sorts of entities do Canadian health reformers typically call 'values'? and; (2) how do Canadian health reformers use the idea of values in health reform rhetoric? We conducted a qualitative, interpretive analysis of 36 Canadian health reform documents published during the period 1990-1999. The values raised in Canadian health reform rhetoric vary widely not only in topic (e.g. health states, health services, equity, economic viability, etc.) but also in substance (e.g. physical entities, goals, principles, attitudes, etc.). We review the diversity of concepts underlying 'values talk' in health policy, and discuss implications for policy analysis and future research.