Defining the role of the public in Health Technology Assessment (HTA) and HTA-informed decision-making processes

Abstract

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.

Patient and public involvement in Health Technology Assessment: a new dawn?

“…Perhaps HTA needs to explore the potential for a wider public role as we recognize that public contributors bring different perspectives. “There 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” (1). …”

Creating a patient and community advisory committee at the Canadian Agency for Drugs and Technologies in Health

“…“Community” is included in the committee title to create space for seniors, those with multiple health concerns, and those living in rural or remote Canada or in other communities who face unique challenges to access care. “Consumer” would be an alternate term (11) but not one used at CADTH.…”

The representation of public values in health technology assessment to inform funding decisions: the case of Australia's national funding bodies

“…These inputs into the PBAC and MSAC processes, including the CCC and the “Unit” main work plan, primarily focus on the experiences of patients, carers, and patient advocacy groups. Adopting the consensus definitions for these groups provided in Street et al (12), we recognize that the interests of “patients/consumers” are not necessarily aligned with the interest of the public (13). Also, with no specific information in the MSAC and PBAC guidelines to indicate how other factors should be considered within HTA evaluation processes, it is not clear what impact CCC and the “Unit” have on decision making to inform the PBAC or MSAC recommendations.…”

“…First, within current HTA evaluation processes, there is no information/guidance as to how influential the “other relevant factors” recommended by the committees are (or should be) when PBAC and MSAC assess the value of new health technologies (6;18), for example, how systematically these factors influence funding decisions when ICERs exceed the ICER threshold. Also, there is a lack of guidance on how to include public views in HTA processes (12). An analysis of the PBAC and MSAC processes concluded that current HTA decision-making processes would benefit from the systematic incorporation of public perspectives (18).…”