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BackgroundWorldwide, governments employ health technology assessment (HTA) in healthcare funding decision making. Requests to include public perspectives in this are increasing, with the idea being that the public can identify social values to guide policy development, increasing the transparency and accountability of government decision making.ObjectiveTo understand the perspectives of the Canadian public on the rationale and design of public involvement in HTA.DesignA demographically representative sample of residents of a Canadian province was selected to take part in two sets of two focus groups (sixteen people for the first set and twenty for the second set).ResultsParticipants were suspicious of the interests driving various stakeholders involved in HTA. They saw the public as uniquely impartial though also lacking knowledge about health technologies. Participants were also suspicious of personal biases and commended mechanisms to reduce their impact. Participants suggested various involvement methods, such as focus groups, citizens' juries and surveys, noting advantages and disadvantages belonging to each and commending a combination.Discussion and conclusionsWe identified a lack of public understanding of how decisions are made and distrust concerning whose interests and values are being considered. Public involvement was seen as a way of providing information to the public and ascertaining their views and values. Participants suggested that public involvement should employ a mixed-methods strategy to support informed debate and participation of a large number of people.

ObjectivesThe terminology used to describe community participation in Health Technology Assessment (HTA) is contested and frequently confusing. The terms patients, consumers, public, lay members, customers, users, citizens, and others have been variously used, sometimes interchangeably. Clarity in the use of terms and goals for including the different groups is needed to mitigate existing inconsistencies in the application of patient and public involvement (PPI) across HTA processes around the world.MethodsWe drew from a range of literature sources in order to conceptualize (i) an operational definition for the “public” and other stakeholders in the context of HTA and (ii) possible goals for their involvement. Draft definitions were tested and refined in an iterative consensus-building process with stakeholders from around the world.ResultsThe goals, terminology, interests, and roles for PPI in HTA processes were clarified. The research provides rationales for why the role of the public should be distinguished from that of patients, their families, and caregivers. A definition for the public in the context of HTA was developed: A community member who holds the public interest and has no commercial, personal, or professional interest in the HTA processConclusionsThere are two distinct aspects to the interests held by the public which should be explicitly included in the HTA process: the first lies in ensuring democratic accountability and the second in recognising the importance of including public values in decision making.

Objective: Governments around the world face challenges in maintaining sustainable, high-quality healthcare systems. Health Technology Assessment (HTA) is widely used as a method to assist in funding decisions. However, the scope and influence of HTA is still limited. We examined how policymakers can improve the usefulness of HTA. Methods: We used Systems Thinking as a theoretical framework to examine HTA as a system. We purposely sampled stakeholders involved in Canadian HTA at a national or provincial level. We conducted 22 semi-structured interviews in September-December 2016. Data were analysed using NVivo10 and findings are presented as a concept map with explanatory text. Findings: The HTA system is influenced by stakeholder interactions. Such interactions are, in turn, affected by stakeholders' worldviews and environmental factors. Stakeholders' worldviews includes individual's or groups' values and affect the exchange of information, and interpretation of events. External factors, such as changes to government structures, also affect the system. Conclusion: Most stakeholder groups are supportive of the system. However, participants identified a need for change, though the exact changes being recommended differed. Some interactions were praised (formal, inclusive collaborations to provide government with policy guidance on both broad and technology-specific matters), while other interactions were criticised (two-party alliances formed around purposes other than the common good, and lacklustre patient and industry engagement on the part of provincial government). Refereed/Peer-reviewed

Background: Governments use a variety of processes to incorporate public perspectives into policymaking, but few studies have evaluated these processes from participants' point of view. Objective: The objective of this study was twofold: to understand the perspectives of selected stakeholders with regard to involvement processes used by Australian Advisory Committees to engage the public and patients; and to identify barriers and facilitators to participation. Design: Twelve semi‐structured interviews were conducted with representatives of different stakeholder groups involved in health technology funding decisions in Australia. Data were collected and analysed using a theoretical framework created by Rowe and Frewer, but adapted to more fully acknowledge issues of power and influence. Results: Stakeholder groups disagreed as to what constitutes effective and inclusive patient involvement. Barriers reported by interviewees included poor communication, a lack of transparency, unworkable deadlines, and inadequate representativeness. Also described were problems associated with defining the task for patients and their advocates and with the timing of patient input in the decision‐making process. Interviewees suggested that patient participation could be improved by increasing the number of patient organizations engaged in processes and including those organizations at different stages of decision making, especially earlier. Conclusions: The different evaluations made by stakeholder groups appear to be underpinned by contrasting conceptions of public involvement and its value, in line with Graham Martin's work which distinguishes between ‘technocratic’ and ‘democratic’ public involvement. Understanding stakeholders' perspectives and the contrasting conceptions of public involvement could foster future agreement on which processes should be used to involve the public in decision making. Refereed/Peer-reviewed

Objective: Including and prioritising community voice in policy development means policy is more likely to reflect community values and priorities. This project trialled and evaluated a storyboard approach in a deliberative community forum to engage Australian Aboriginal people in health policy priority setting. Methods: The forum was co‐constructed with two Aboriginal community‐controlled organisations. A circle storyboard was used to centre Aboriginal community knowledge and values and encourage the group to engage with broader perspectives and evidence. The forum asked a diverse (descriptively representative) group of Aboriginal people in a rural town what governments should do to support the wellbeing of children and youth, particularly to encourage them to eat well and be active. Results: The storyboard provided a tactile device to allow shared stories and identification of community issues. The group identified policies they believed governments should prioritise, including strategies to combat racism and provide local supports and outlets for young people. Conclusions: An informed deliberative storyboard approach offers a novel way of engaging with Aboriginal communities in a culturally appropriate and inclusive manner. Implications for public health: The identification of racism as a major issue of concern in preventing children from living healthy lifestyles highlights the need for policy responses in this area.

This chapter argues for the use of deliberative methods to involve patients in HTA. Deliberation refers to ‘communication that induces reflection on preferences, values and interests in a non-coercive fashion’ (Mansbridge et al. J Polit Philos 18:e100, 2010, p. 2). Deliberative democracy or deliberative governance posits the notion that ‘policy making requires spaces where different institutions, agencies, groups, activists and individual citizens can come together to deliberate on pressing social issues’ (Hendriks, Polit Soc 28:173–184, 2009). In HTA, deliberative spaces already exist in patient organisations and in government advisory panels which include experts and in some cases citizen or patient ‘representatives’. However, many patients still feel disenfranchised from systems which often appear to value clinical efficacy and cost-effectiveness over patient wellbeing and which often marginalise patient voices (Lopes et al., Health Expect 9:331–344, 2016). This chapter describes methods which aim to be inclusive of patients’ preferences, values and interests by bringing a diverse group of patients and/or patient representatives into informed deliberation to directly influence the policy process. This approach differs from collection of patient views and experience through qualitative approaches in that patients act as active participants in the policy deliberation. The chapter first introduces some elements of good deliberation and deliberative democratic theory that are pertinent to the argument and presents some involvement methods based on this theory. Current and potential involvement of stakeholders in HTA deliberation is mapped. The methodological and philosophical elements are then examined for their potential applicability to patient involvement in HTA.