Values, principles, strategies, and frameworks underlying patient and public involvement in health technology assessment and guideline development: a scoping review

Pinho-Gomes, Ana-Catarina; Stone, James M.; Shaw, Toni; Heath, Andrea; Cowl, Jane; Norburn, Laura; Thomas, Victoria; Scott, Sarah

doi:10.1017/s0266462322000289

Cited by 7 publications

(7 citation statements)

References 31 publications

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“…Regarding patient engagement and patient preferences in HTA, many approaches were identified and listed as good practice documents, tracing possible mechanisms for inclusion of the patients in the decision-making process. These approaches also aim to establish guidance on different stakeholder involvement, identify emerging strategies and state of art methods do overcome challenges related to the patient engagement in the HTA process (25,(54)(55)(56)(57)(58)(59)(60)(61)(62)(63)(64)(65)(66)(67)(68). Notably, the European Patients' Academy on Therapeutic Innovation (EUPATI) published four guidance papers for patient involvement, one of which was about HTA.…”

Section: Conflict Of Interest and Confidentialitymentioning

confidence: 99%

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries

Dimitrova

Jakab²,

Mitkova

et al. 2022

Front. Public Health

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Patients' perspectives are important to identify preferences, estimate values and appreciate unmet medical needs in the process of research and development and subsequent assessment of new health technologies. Patient and public involvement in health technology assessment (HTA) is essential in understanding and assessing wider implications of coverage and reimbursement decisions for patients, their relatives, caregivers, and the general population. There are two approaches to incorporating the patients' voice in HTA, preferably used in a mix. In the first one, patients, caregivers and/or their representatives directly participate at discussions in different stages of the HTA process, often at the same table with other stakeholders. Secondly, patient involvement activities can be supported by evidence on patient value and experience collected directly from patients, caregivers and/or their representatives often by patient groups Patient involvement practices, however, are limited in Central and Eastern European (CEE) countries without clear methodology or regulatory mechanisms to guide patient involvement in the HTA process. This poses the question of transferability of practices used in other countries, and might call for the development of new CEE-specific guidelines and methods. In this study we aim to map potential barriers of patient involvement in HTA in countries of the CEE region.

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Section: Conflict Of Interest and Confidentialitymentioning

confidence: 99%

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries

Dimitrova

Jakab²,

Mitkova

et al. 2022

Front. Public Health

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“…There is a need to strengthen capacity and provide pragmatic guidance which discusses the trade-offs, benefits, and disadvantages of HTA transfers. Additionally, involving stakeholders is essential as they can provide expert information, ensure relevant research questions are asked, inform about transferability, and comment on the uncertainty of transferred HTAs (7;8;21).…”

Section: Implications For Practicementioning

confidence: 99%

“…There is consensus that stakeholders (i.e., patients, providers, policymakers, etc.) should be involved in each step of the HTA process, as this brings many benefits, such as the inclusion of relevant outcomes regarding the quality of life and cost-effectiveness, understanding uncertainty of data and results, and further implementation (7;8). This is especially true when transferring HTAs where most or all evidence is not from local sources and the involvement of stakeholders will ensure local relevance.…”

Section: Introductionmentioning

confidence: 99%

Considerations for transferability of health technology assessments: a scoping review of tools, methods, and practices

Heupink

Peacocke

Sæterdal

et al. 2022

Int J Technol Assess Health Care

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Health technology assessment (HTA) is commonly used to guide evidence-informed decisions to optimize resource use, prioritize policies, and support countries to achieve universal health coverage. Producing HTAs requires time, scientific expertise, and political commitment, but these are not available in all settings – especially in low- and middle-income countries (LMIC) where HTA processes may be less institutionalized. Transferring and adapting existing HTAs to local settings may offer a solution while reducing duplication efforts. This scoping review aims to provide an overview of tools, methods, approaches, and considerations which can aid HTA transfers. We systematically searched (from 2005 to 2020) six databases and, using predefined inclusion criteria, included twenty-two studies. Data extraction followed a structured process, while synthesis was more iterative. We identified a common approach for HTA transfers. It follows the de novo process of undertaking original HTAs, but with additional steps to assess relevance (applicability), quality, and transferability, as well as steps to adapt parameters where necessary. The EUnetHTA Adaptation Toolkit was the only tool that provided guidance for adapting multiple HTA domains. Other tools were specific to systematic reviews (n = 1) or economic evaluations (n = 12), where one provided guidance for systematic reviews of economic evaluations. Eight papers reported transferring an HTA, with only one transferring to an LMIC. Finally, we reported issues that may facilitate or hinder transferability. In conclusion, we identified fourteen transfer approaches in the form of guidance or checklists, but harmonized and pragmatic guidance for HTA transfers to suit settings with limited HTA capacity seems warranted.

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“…First, to conduct an international study through a review to identify online HTA training tools and to analyze and compare the tools currently offered. Although reviews have been conducted for other topics related to patient and public involvement (PPI) in HTA (13), a knowledge gap exists on this topic. An online HTA training tool or material (henceforth referred to as: training tool ) is defined here as an instrument used to educate a public on HTA on how they are affected by and can contribute to HTA processes, delivered through an online platform.…”

Section: Introductionmentioning

confidence: 99%

“…An online HTA training tool or material (henceforth referred to as: training tool ) is defined here as an instrument used to educate a public on HTA on how they are affected by and can contribute to HTA processes, delivered through an online platform. The study specifically examined those used by HTAbs outside of France and major French, European, and international PCGs (13). Second, to present the results to a patient and consumer working group to see if they would meet the needs and to identify other needs in terms of the themes and format of the HTA training required.…”

Section: Introductionmentioning

confidence: 99%

International overview of health technology assessment training tools and materials for patients and consumers

Low,

André-Vert,

Fanelli

et al. 2023

Int J Technol Assess Health Care

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Objectives The study, conducted by the French National Authority for Health (HAS), aimed to identify available online health technology assessment (HTA) training tools for patients, specifically those used by HTA bodies (HTAbs) and major selected European and international patient and consumer groups (PCGs), to inform an HTA training approach for HAS. Methods A literature search, a review of selected websites, semi-structured interviews with HTAbs and patient groups, and discussion within a dedicated working group to help target the needs and preferences of patients and consumers were conducted. Online HTA training tools relating to HTA and patient and public involvement (PPI), published or translated into English or French, were included in the study results. Results Eighty-two online HTA training tools for patients and consumers were selected according to the specified inclusion criteria coming from sixteen international HTAbs, nine European and international PCGs, and thirteen other organizations. Two main categories emerged: the first relating to HTA and the second relating to PPI in HTA. The formats of these tools ranged from interactive and non-interactive formats with varying accessibility and assessment methods. No journal articles mentioned explicitly the content and format of PCG training tools. Conclusions This research served as a basis for HAS to develop their own HTA training tools and materials for patients and consumers. Two training tools were subsequently developed, guided by the needs and preferences of a patient and consumer working group, and were published on the HAS website in November 2022.

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Values, principles, strategies, and frameworks underlying patient and public involvement in health technology assessment and guideline development: a scoping review

Cited by 7 publications

References 31 publications

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries

Considerations for transferability of health technology assessments: a scoping review of tools, methods, and practices

International overview of health technology assessment training tools and materials for patients and consumers

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