A consumer involvement model for health technology assessment in Canada

Bringing ‘the public’ into health technology assessment and coverage policy decisions: From principles to practice

“…The UK's Health Technology Assessment Program has, for example, established an infrastructure to support direct consumer involvement in the identification and prioritization of HTA topics and in the review of selected HTA research proposals and reports [32,33]. Similar types of activities have been documented in the Patient Involvement Unit (PIU) established by the National Institute of Clinical Excellence (NICE) in 2001 and through the establishment of Australia's Consumer Focus Collaboration under the National Expert Advisory Group on Safety and Quality in Health Care [30]. These top-down technocratic approaches to consumer or 'user' involvement are to be distinguished from consumer activity led by advocacy groups and/or their sponsors [34].…”

“…At the same time, a growing consumerist orientation to health care policy routinely draws health system "users" into consultations, evaluations and decisionmaking processes about health technology by health planners and managers [30,31]. The UK's Health Technology Assessment Program has, for example, established an infrastructure to support direct consumer involvement in the identification and prioritization of HTA topics and in the review of selected HTA research proposals and reports [32,33].…”

“…While existing frameworks have made important contributions to its component parts [26][27][28]30] we have not found any that apply public participation and accountability theory and concepts to the full spectrum of health technology assessment, coverage policy and decision-making activities to address the following questions: What are the different public involvement and accountability goals that might be pursued, through which models and mechanisms, and by whom? The framework is intended for health policy makers in Canada and abroad who are grappling with a new imperative to make technology assessment and policy more "public.…”

Assessing genetic testing: Who are the “lay experts”?

“…Thus it has been argued that HTA should expand its repertoire beyond quantitative and positivistic methods (RCT and cost-benefit analysis) to qualitative ones and should develop more participatory processes that seek input from societal actors beyond the categories of medical-scientific and economic experts [2,5,7,10,11]. This has been emphasized particularly for prospective assessment:…”

“…When it comes to health technologies, studies on local or experiential knowledge have tended to locate that knowledge in patients (or, in some cases, caregivers), and calls for greater public involvement in health policy, including in HTA, have also emphasized the role of patients or organised patient groups [11,17,18]. In the case of policies on genetic testing, the focus has typically been on those affected by or at risk from a genetic condition [19].…”