Enhancing the use of technology in the long-term care sector in Canada: Insights from citizen panels and a national stakeholder dialogue.

Enhancing the use of technology in long-term care has been identified as a key part of broader efforts to strengthen the sector in the wake of the COVID-19 pandemic. To inform such efforts, we convened a series of citizen panels, followed by a national stakeholder dialogue with system leaders focused on reimagining the long-term care sector using technology. Key actions prioritized through the deliberations convened included: developing an innovation roadmap/agenda (including national standards and guidelines); using co-design approaches for the strengthening the long-term care sector and for technological innovation; identifying and coordinating existing innovation projects to support scale and spread; enabling rapid-learning and improvement cycles to support the development, evaluation, and implementation of new technologies; and using funding models that enable the flexibility needed for such rapid-learning cycles.

Information needs of francophone health care professionals and the public with regard to medical assistance in dying in Quebec: a qualitative study.

BACKGROUND: In 2016, the Canadian government legalized medical assistance in dying (MAiD) for adults with terminal illness. The objective of this study was to explore the information needs of health care professionals and members of the public regarding MAiD. METHODS: This was a qualitative study involving a 1-day face-to-face forum followed by a 3-week online forum across the province of Quebec conducted in June 2016. French-speaking participants targeted for the study included members of the public (citizens, patients and caregivers) and health care professionals. Participants were recruited through calls for applications to a patient partner network and via social media, and through mailing lists of partner professional and community organizations across Quebec. We used a purposeful sampling strategy to recruit a diverse group of participants. In the forums, deliberations were prompted by short informational videos about MAiD. We performed a thematic analysis to identify key information needs. RESULTS: Fifty members of the public and 35 health care professionals participated. Forty-three people participated in the face-to-face meeting, and 42 people participated online. Participants identified 32 information needs (22 expressed by both members of the public and health care professionals, and 10 specific to members of the public) regarding the definition of MAiD, eligibility criteria, and documenting and evaluating practices. Information needs varied along different stages of the patient's journey. Participants expressed the need to be informed about issues that go beyond the medical and legal aspects of MAiD (e.g., relational, symbolic, psychological and spiritual aspects). INTERPRETATION: The findings show that health care professionals and members of the public have common information needs regarding MAiD and seek information on the relational, emotional and symbolic aspects of this practice. These findings call for concerted efforts to build a common information base - covering dimensions that go beyond the medical and legal aspects of MAiD - to facilitate informed conversations among patients, health care professionals and members of the public.

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.

BACKGROUND: Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. OBJECTIVE: Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS: We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. RESULTS: In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. CONCLUSION: A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

Recommendations for patient engagement in patient-oriented emergency medicine research.

OBJECTIVE: To make pragmatic recommendations on best practices for the engagement of patients in emergency medicine (EM) research. METHODS: We created a panel of expert Canadian EM researchers, physicians, and a patient partner to develop our recommendations. We used mixed methods consisting of 1) a literature review; 2) a survey of Canadian EM researchers; 3) qualitative interviews with key informants; and 4) feedback during the 2017 Canadian Association of Emergency Physicians (CAEP) Academic Symposium. RESULTS: We synthesized our literature review into categories including identification and engagement, patients' roles, perceived benefits, harms, and barriers to patient engagement; 40/75 (53% response rate) invited researchers completed our survey. Among respondents, 58% had engaged patients in research, and 83% intended to engage patients in future research. However, 95% stated that they need further guidance to engage patients. Our qualitative interviews revealed barriers to patient engagement, including the need for training and patient partner recruitment.Our panel recommends 1) an overarching positive recommendation to support patient engagement in EM research; 2) seven policy-level recommendations for CAEP to support the creation of a national patient council, to develop, adopt and adapt training material, guidelines, and tools for patient engagement, and to support increased patient engagement in EM research; and 3) nine pragmatic recommendations about engaging patients in the preparatory, execution, and translational phases of EM research. CONCLUSION: Patient engagement can improve EM research by helping researchers select meaningful outcomes, increase social acceptability of studies, and design knowledge translation strategies that target patients' needs.

Designing Integrated Approaches to Support People with Multimorbidity: Key Messages from Systematic Reviews, Health System Leaders and Citizens.

BACKGROUND: Living with multiple chronic conditions (multimorbidity) - and facing complex, uncoordinated and fragmented care - is part of the daily life of a growing number of Canadians. METHODS: We undertook: a knowledge synthesis; a "gap analysis" of existing systematic reviews; an issue brief that synthesized the available evidence about the problem, three options for addressing it and implementation considerations; a stakeholder dialogue involving key health-system leaders; and a citizen panel. RESULTS: We identified several recommendations for actions that can be taken, including: developing evidence-based guidance that providers can use to help achieve goals set by patients; embracing approaches to supporting self-management; supporting greater communication and collaboration across healthcare providers as well as between healthcare providers and patients; and investing more efforts in health promotion and disease prevention. CONCLUSIONS: Our results point to the need for health system decision-makers to support bottom-up, person-centred approaches to developing models of care that are tailored for people with multimorbidity and support a research agenda to address the identified priorities.

Developing a rapid-response program for health system decision-makers in Canada: findings from an issue brief and stakeholder dialogue.

BACKGROUND: There is currently no mechanism in place outside of government to provide rapid syntheses of the best available research evidence about problems, options and/or implementation considerations related to a specific health system challenge that Canadian health system decision-makers need to address in a timely manner. A 'rapid-response' program could address this gap by providing access to optimally packaged, relevant and high-quality research evidence over short periods of time (i.e. days or weeks). METHODS: We prepared an issue brief that describes the best available research evidence related to the problem, three broad features of a program that addresses the problem and implementation considerations. We identified systematic reviews by searching for organization-targeted implementation strategies in Health Systems Evidence ( www.healthsystemsevidence.org ) and drew on an existing analytical framework for how knowledge-brokering organizations can organize themselves to operationalize the program features. The issue brief was then used to inform a half-day stakeholder dialogue about whether and how to develop a rapid-response program for health system decision-makers in Canada. We thematically synthesized the deliberations. RESULTS: We found very few relevant systematic reviews but used frameworks and examples from existing programs to 1) outline key considerations for organizing a rapid-response program,, 2) determine what can be done in timelines ranging from 3 to 10 and 30 business days, and 3) define success and measure it. The 11 dialogue participants from across Canada largely agreed with the content presented in the brief, but noted two key challenges to consider: securing stable, long-term funding and finding a way to effectively and equitably manage the expected demand. Recommendations and suggestions for next steps from dialogue participants included taking an 'organic' approach to developing a pan-Canadian network and including jurisdictional scans as a type of product to deliver through the program (rather than only syntheses of research evidence). CONCLUSIONS: Dialogue participants clearly signalled that there is an appetite for a rapid-response program for health system decision-makers in Canada. To 'organically' build such a program, we are currently engaging in efforts to build partnerships and secure funding to support the creation of a pan-Canadian network for conducting rapid syntheses for health system decision-makers in Canada.

Evaluating deliberative dialogues focussed on healthy public policy.

BACKGROUND: Deliberative dialogues have recently captured attention in the public health policy arena because they have the potential to address several key factors that influence the use of research evidence in policymaking. We conducted an evaluation of three deliberative dialogues convened in Canada by the National Collaborating Centre for Healthy Public Policy in order to learn more about deliberative dialogues focussed on healthy public policy. METHODS: The evaluation included a formative assessment of participants' views about and experiences with ten key design features of the dialogues, and a summative assessment of participants' intention to use research evidence of the type that was discussed at the dialogue. We surveyed participants immediately after each dialogue was completed and again six months later. We analyzed the ratings using descriptive statistics and the written comments by conducting a thematic analysis. RESULTS: A total of 31 individuals participated in the three deliberative dialogues that we evaluated. The response rate was 94% (N = 29; policymakers (n = 9), stakeholders (n = 18), researchers (n = 2)) for the initial survey and 56% (n = 14) for the follow-up. All 10 of the design features that we examined as part of the formative evaluation were rated favourably by all participant groups. The findings of the summative evaluation demonstrated a mean behavioural intention score of 5.8 on a scale from 1 (strongly disagree) to 7 (strongly agree). CONCLUSION: Our findings reinforce the promise of deliberative dialogues as a strategy for supporting evidence-informed public health policies. Additional work is needed to understand more about which design elements work in which situations and for different issues, and whether intention to use research evidence is a suitable substitute for measuring actual behaviour change.

Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers, hospital managers and patients.

BACKGROUND: The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient's perspective is taken into consideration when such decisions are made. OBJECTIVE: To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level. METHOD: Data were collected using semi-structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives. RESULTS: Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them. DISCUSSION AND CONCLUSION: This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.

Assessing the impacts of citizen deliberations on the health technology process.

OBJECTIVES: We assessed the impacts of a Citizens' Reference Panel on the deliberations of a provincial health technology advisory committee and its secretariat, which produce, recommendations for the use of health technologies in Ontario, Canada. METHODS: A fourteen-member citizens' reference panel was convened five times between February 2009 and May 2010 to participate in informed, facilitated discussions to inform the assessment of individual technologies and provincial health technology assessment processes more generally. Qualitative data collection methods were used to document observed and perceived impacts of the citizens' panel on the health technology assessment (HTA) process. RESULTS: Panel impacts were observed for all technologies reviewed, at two different stages in the HTA process, and represented macro- (raising awareness) and micro-level (informing recommendations) impacts. These impacts were shaped by periodic opportunities for direct and brokered exchange between the Panel and the expert advisory committee to clarify roles, foster accountability, and build trust. Our findings offer new insights about one of the main considerations in the design of deliberative participatory structures-how to maintain the independence of a citizens' panel while ensuring that their input is considered at key junctures in the HTA process. CONCLUSIONS: Citizens' panels can exert various impacts on the HTA process. Ensuring these types of structures include opportunities for direct exchange between citizens and experts, to clarify roles, promote accountability, and build trust will facilitate their impacts in a variety of settings.

Citizens' perspectives on personalized medicine: a qualitative public deliberation study.

Our objective was to explore citizens' informed and reasoned values and expectations of personalized medicine, a timely yet novel genomics policy issue. A qualitative, public deliberation study was undertaken using a citizens' reference panel on health technologies, established to provide input to the health technology assessment process in Ontario, Canada. The citizens' panel consisted of five women and nine men, aged 18-71 years, with one member selected from each health authority region. There were shared expectations among the citizens' panel members for the potential of personalized medicine technologies to improve care, provided they are deemed clinically valid and effective. These expectations were tempered by concerns about value for money and the possibility that access to treatment may be limited by personalized medicine tests used to stratify patients. Although they questioned the presumed technological imperative presented by personalized medicine technologies, they called for increased efforts to prepare the health-care system to effectively integrate these technologies. This study represents an early but important effort to explore public values toward personalized medicine. This study also provides evidence of the public's ability to form coherent judgments about a new policy issue. Concerned that personalized tests might be used to ration care, they suggested that treatment should be made available if patients wanted it, irrespective of tests that indicate little benefit. This issue raises clinical and policy challenges that may undermine the value of personalized medicine. Further efforts to deliberate with the public are warranted to inform effective, efficient and equitable translation of personalized medicine.

Involving patients in HTA activities at local level: a study protocol based on the collaboration between researchers and knowledge users.

BACKGROUND: The literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level. Following the decentralisation of HTA in Quebec, Canada, the last few years have seen the creation of HTA units in many Quebec university hospital centres. These units represent a unique opportunity for increased patient involvement in HTA at the local level. Our project will engage patients in an assessment being carried out by a local HTA team to assess alternatives to isolation and restraint for hospitalized or institutionalized adults. Our objectives are to: 1) validate a reference framework for exploring the relevance and applicability of various models of patient involvement in HTA, 2) implement strategies that involve patients (including close relatives and representatives) at different stages of the HTA process, 3) evaluate intervention processes, and 4) explore the impact of these interventions on a) the applicability and acceptability of recommendations arising from the assessment, b) patient satisfaction, and c) the sustainability of this approach in HTA. METHODS: For Objective 1, we will conduct individual interviews with various stakeholders affected by the use of alternatives to isolation and restraint for hospitalized or institutionalized adults. For Objective 2, we will implement three specific strategies for patient involvement in HTA: a) direct participation in the HTA process, b) consultation of patients or their close relatives through data collection, and c) patient involvement in the dissemination of HTA results. For Objectives 3 and 4, we will evaluate the intervention processes and the impact of patient involvement strategies on the recommendations arising from the HTA and the understanding of the ethical and social implications of the HTA. DISCUSSION: This project is likely to influence future HTA practices because it directly targets knowledge users' need for strategies that increase patient involvement in HTA. By documenting the processes and outcomes of these involvement strategies, the project will contribute to the knowledge base related to patient involvement in HTA.

Eliciting ethical and social values in health technology assessment: A participatory approach.

Despite a growing consensus that ethical and social values should be addressed in health technology assessment (HTA) processes, there exist a variety of methods for doing so. There is growing interest in involving citizens in policy development to ensure that decisions are legitimate, and reflect the broad social values of the public. We sought to bring these issues together by employing a participatory approach to elicit ethical and social values in HTA. Our primary objective was to elicit a set of ethical and social values from citizens that could be used to guide Ontario's HTA evidentiary review and appraisal process. A secondary objective was to explore the feasibility of using participatory approaches to elicit these values. A 14-person Citizens' Reference Panel on Health Technologies was established to provide input to the Ontario Health Technology Advisory Committee in developing its recommendations. A mixed methods approach was used where informed, deliberative discussions were combined with pre- and post-questionnaires, which assessed the relative importance of various ethical and social values as well as their stability over time. Over the course of five meetings, panel members progressed toward the identification of a set of core values -universal access, choice and quality care. These values were consistently prioritized as the core values that should be considered in the evaluation of health technologies and ensuing recommendations. Sustained and deliberative methods, like a citizens' panel, offer a promising approach for eliciting ethical and social values into HTA.

Moving cautiously: Public involvement and the health technology assessment community.

OBJECTIVES: This study explores the factors that enhance or reduce the prospects for public involvement in the activities of health technology assessment (HTA) agencies. METHODS: The analytical framework for this study is based on the work of John W. Kingdon, which provides a comprehensive synthesis of the factors influencing governments and public organizations' agenda. The study draws insights from forty-two semistructured telephone interviews with informants involved in international HTA networks and/or in HTA agencies in Canada, Denmark, and the United Kingdom. RESULTS: This exploratory study suggests that the HTA community is moving toward greater public involvement. However, the HTA community remains cautious and ambivalent about the technical feasibility of public involvement, its acceptability to policy makers and practitioners, and its impacts on HTA agencies' resources and procedures. CONCLUSIONS: The study stresses the importance of conducting rigorous and compelling evaluations to inform HTA agencies' decision to adopt, or reject, public involvement practices.

Introducing patients' and the public's perspectives to health technology assessment: A systematic review of international experiences.

OBJECTIVES: The aim of this study was to review international experiences of patient or public involvement in the field of health technology assessment (HTA). METHODS: A systematic review of the scientific literature was conducted. A literature search was performed across nine databases. Other literature was identified through citation tracking, government websites (HTA agencies), and Internet search engines. Characteristics of the studies, description of the activities related to patient or public involvement, impact of these activities on the HTA process, and factors facilitating or limiting involvement were abstracted independently by two reviewers. RESULTS: A total of 1,441 potentially relevant papers were identified by the main search strategy. Among these, seventeen papers met the inclusion criteria; other search strategies identified seven additional documents. The findings reveal that patient or public involvement in HTA activities was reported in two domains, research and HTA process. In the research domain, patients are consulted to gather evidence about their perspectives, experiences, or preferences about a health technology. These perspectives could add key dimensions to the evaluation of health technologies that might otherwise be overlooked. In the domain of the HTA process, patients or public representatives participate in different stages of this process: prioritization, evidence assessment, or dissemination of findings. CONCLUSIONS: There are few published examples of experiences involving patients and the public in HTA. These examples show that patients' or the public's perspectives could add important dimensions to the evaluation of health technologies. However, there is a need to develop more systematic approaches to considering patients' and the public's perspectives in HTA.

Interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model.

Most shared decision-making (SDM) models within healthcare have been limited to the patient-physician dyad. As a first step towards promoting an interprofessional approach to SDM in primary care, this article reports how an interprofessional and interdisciplinary group developed and achieved consensus on a new interprofessional SDM model. The key concepts within published reviews of SDM models and interprofessionalism were identified, analysed, and discussed by the group in order to reach consensus on the new interprofessional SDM (IP-SDM) model. The IP-SDM model comprises three levels: the individual (micro) level and two healthcare system (meso and macro) levels. At the individual level, the patient presents with a health condition that requires decision-making and follows a structured process to make an informed, value-based decision in concert with a team of healthcare professionals. The model acknowledges (at the meso level) the influence of individual team members' professional roles including the decision coach and organizational routines. At the macro level it acknowledges the influence of system level factors (i.e. health policies, professional organisations, and social context) on the meso and individual levels. Subsequently, the IP-SDM model will be validated with other stakeholders.

"It all depends": conceptualizing public involvement in the context of health technology assessment agencies.

There have been calls in recent years for greater public involvement in health technology assessment (HTA). Yet the concept of public involvement is poorly articulated and little attention has been paid to the context of HTA agencies. This article investigates how public involvement is conceptualized in the HTA agency environment. Using qualitative concept analysis methods, we reviewed the HTA literature and the websites of HTA agencies and conducted semi-structured interviews with informants in Canada, Denmark, and the United Kingdom. Our analysis reveals that HTA agencies' role as bridges or boundary organizations situated at the frontier of research and policymaking causes the agencies to struggle with the idea of public involvement. The HTA community is concerned with conceptualizing public involvement in such a way as to meet scientific and methodological standards without neglecting its responsibilities to healthcare policymakers. We offer a conceptual tool for analyzing the nature of public involvement across agencies, characterizing different domains, levels of involvement, and types of publics.

Introducing patient perspective in health technology assessment at the local level.

BACKGROUND: Recognizing the importance of increased patient participation in healthcare decisions leads decision makers to consider effective ways to incorporate patient perspectives in Health Technology Assessment (HTA) processes. The implementation of local health HTA units in university hospitals in Quebec provides a unique opportunity to foster an increased participation of patients in decisions regarding health technologies and clinical interventions. This project explores strategies that could be effective in involving patients in HTA activities at the local level. To do so, three objectives are pursued: 1) To synthesise international knowledge and experiences on patient and public involvement in HTA activities; 2) To explore the perceptions of stakeholders (administrators, clinical managers, healthcare professionals, HTA producers, and patients) regarding strategies for involving patients in various HTA activities; and 3) To produce a consensual strategic framework that could guide interventions for involving patients in HTA activities at the local level. METHODS: A systematic review of the literature will be conducted to synthesise international knowledge and experiments regarding the implication of patients and public in HTA. Then, focus groups will be carried out with representatives of various stakeholder groups in order to explore their perceptions regarding patient participation in HTA. Based on findings from the systematic review and the focus groups, a framework to support patient participation in HTA activities will be proposed. It will then be validated during a deliberative meeting with the research team, composed of scientists and decision makers, and representatives from different groups involved in HTA in Quebec. This deliberative meeting will aim at identifying the type and the degree of participation as well as the adequate timing for involving patients in local HTA activities. DISCUSSION: Given the actual state of evidence, integrating patient perspective in HTA activities has the potential to improve the quality of healthcare services. This study provides an opportunity to bridge the gap between HTA producers and its ultimate end-user: the patient. It will provide guidance to support local HTA units in Quebec and elsewhere in their decisions regarding patient participation. The framework developed could be applied to design and implement strategies for involving patients in HTA activities.

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.