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

2011 ◽  
Vol 27 (1) ◽  
pp. 31-42 ◽  
Author(s):  
Marie-Pierre Gagnon ◽  
Marie Desmartis ◽  
Dolorès Lepage-Savary ◽  
Johanne Gagnon ◽  
Michèle St-Pierre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
The Public ◽  
Health Technologies ◽  
International Experiences ◽  
Government Websites ◽  
Key Dimensions

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.

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

2021 ◽  
Vol 37 ◽  
Author(s):  
Hossein Haji Ali Afzali ◽  
Jackie Street ◽  
Tracy Merlin ◽  
Jonathan Karnon
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Public Funding ◽  
Health Technology ◽  
The Public ◽  
Health Technologies ◽  
Technol Assess Health ◽  
Public Inputs ◽  
Decision Making Processes

Abstract Over the past few years, there has been an increasing recognition of the value of public involvement in health technology assessment (HTA) to ensure the legitimacy and fairness of public funding decisions [Street J, Stafinski T, Lopes E, Menon D. Defining the role of the public in Health Technology Assessment (HTA) and HTA-informed decision-making processes. Int J Technol Assess Health Care. 2020;36:87–95]. However, important challenges remain, in particular, how to reorient HTA to reflect public priorities. In a recent international survey of thirty HTA agencies conducted by the International Network of Agencies for HTA (INAHTA), public engagement in HTA was listed as one of the “Top 10” challenges for HTA agencies [O'Rourke B, Werko SS, Merlin T, Huang LY, Schuller T. The “Top 10” challenges for health technology assessment: INAHTA viewpoint. Int J Technol Assess. 2020;36:1–4]. Historically, Australia has been at the forefront of the application of HTA for assessing the effectiveness and cost-effectiveness of new health technologies to inform public funding decisions. However, current HTA processes in Australia lack meaningful public inputs. Using Australia as an example, we describe this important limitation and discuss the potential impact of this gap on the health system and future directions.

PP115 Patient And Public Involvement In Health Technology Assessment: Update Of A Systematic Review

2017 ◽  
Vol 33 (S1) ◽  
pp. 126-126 ◽  
Author(s):  
Mylène Tantchou ◽  
Marie-Pierre Gagnon ◽  
Thomas Poder
Keyword(s):  
Systematic Review ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Field Studies ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Previous Systematic Review ◽  
The Public ◽  
Patient And Public Engagement

INTRODUCTION:There is a general consensus on the need to involve patients and the public in Health Technology Assessment (HTA) but questions remain about the best strategies for involving them into HTA structures and activities. The aim of this study was to update a systematic review (published in 2011) on patient and public engagement in HTA.METHODS:We searched papers published between January 2009 (end of the initial search) and November 2016 in eight databases and HTA journals using specific search strategies. We identified other publications through citation tracking, Internet search engines, HTA agencies websites, and discussion with experts in the field. Studies in English or French were included if they met the following criteria: (i) qualitative, quantitative or mixed-methods study; (ii) describing patients or public involvement; and (iii) in the HTA field. We extracted information using a pre-established grid including: characteristics of studies, type of activities for involving patients or public, effects on decisions, and factors facilitating or limiting involvement.RESULTS:We identified a total of 4,762 new publications from the main search strategy. Among them, twenty-eight articles (reporting on twenty-three studies) met the inclusion criteria, whereas seventeen articles were included in the previous systematic review. Research designs are qualitative (18/23), quantitative (3/23) or mixed (2/23). Two main strategies for involving patients and public are generally described. The first is when public representatives participate directly in decision-making processes (participation) and the second is when patient or public input is sought to inform decisions (consultation or indirect participation).CONCLUSIONS:The number of studies on patient and public involvement in HTA has increased in recent years. Findings from this update are mainly consistent with those of the previous systematic review. However, studies are still needed to assess the effectiveness of different strategies for involving patients and the public in HTA.

scholarly journals Time to Align: A Call for Consensus on the Assessment of Genetic Testing

2021 ◽  
Vol 9 ◽  
Author(s):  
Erica Pitini ◽  
Valentina Baccolini ◽  
Giuseppe Migliara ◽  
Claudia Isonne ◽  
Alessandro Sindoni ◽  
...  
Keyword(s):  
Systematic Review ◽  
Genetic Testing ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Ad Hoc ◽  
Health Technology ◽  
Health Technologies ◽  
Traditional Health ◽  
Methodological Principles ◽  
Reference Tool

In this paper, we updated our 2018 systematic review aimed to identify and compare ad hoc designed frameworks for genetic testing evaluation. Overall, we identified 30 frameworks (29 in the first systematic review and one in the update): they were mainly based on the ACCE model, whereas a minority were adjustments of the more traditional Health Technology Assessment (HTA) approach. After discussing the strengths and weaknesses of the retrieved frameworks, this perspective calls for consensus on the assessment of genetic testing. In line with the recent European recommendations that encouraged the generation of comparable evidence across Member States, we believe that the time has come to align all the ideas that have emerged over the last few decades and find a sustainable and sharable tool for the evaluation of genetic and genomic applications. Therefore, we suggest stopping the evaluation of such technologies using ad hoc strategies–affected by validation, implementation, and adoption issues–and we propose to use a general HTA approach, particularly the European reference tool for the assessment of health technologies, the EUnetHTA HTA core model, that is built on solid theoretical and methodological principles and provides a comprehensive assessment of the technologies value.

OP110 Survey Of Health Technology Assessment Evaluation Strategies For Patient And Public Involvement

2017 ◽  
Vol 33 (S1) ◽  
pp. 51-52
Author(s):  
Laura Weeks ◽  
Julie Polisena ◽  
Anna Scott ◽  
Anke-Peggy Holtorf ◽  
Sophie Staniszewska ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Participant Satisfaction ◽  
The Public ◽  
Evaluation Strategies ◽  
And Training ◽  
Process Evaluations

INTRODUCTION:Although there is increased awareness of patient and public involvement (PPI) among Health Technology Assessment (HTA) organizations, evaluations of PPI initiatives are relatively scarce. Our objective as members of HTAi's Patient and Citizen Involvement Group (PCIG) was to advance understanding of the range of evaluation strategies adopted by HTA organizations and their potential usefulness.METHODS:In March 2016, a survey was sent to HTA organizations through the International Network of Agencies for Health Technology Assessment (INAHTA) and contacts of members of HTAi's PCIG. Respondents were asked about their organizational structure; how patients and members of the public are involved; whether and how PPI initiatives have been evaluated, and, if so, which facilitators and challenges to evaluation were found and how results were used and disseminated.RESULTS:Fifteen programs from twelve countries responded that involved patient (14/15) and members of the public (10/15) in HTA activities. Seven programs evaluated their PPI activities, including participant satisfaction (5/7), process evaluations (5/7) and impact evaluations (4/7). Evaluation results were used to improve PPI activities, identify education and training needs, and direct strategic priorities. Facilitators and challenges revolved around the need for stakeholder buy-in, sufficient resources, senior leadership, and including patients in evaluations. Participants also provided suggestions based on their experiences for others embarking on this work, for example including patients and members of the public in the process.CONCLUSIONS:We identified a small but diverse set of HTA organizations internationally that are evaluating their PPI activities. Our results add to the limited literature by documenting a range of evaluation strategies that reflect the range of rationales and approaches to PPI in HTA. It will be important for HTA organizations to draw on formal evaluation theories and methods when planning future evaluations, and to also share their approaches and experiences with evaluation.

OP33 Developing A Public Version Of A Health Technology Assessment Report

2017 ◽  
Vol 33 (S1) ◽  
pp. 15-15
Author(s):  
Naomi Fearns ◽  
Emma Riches ◽  
Joanna Kelly ◽  
Karen Macpherson
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Chronic Wounds ◽  
Health Technology ◽  
Wound Dressings ◽  
Advisory Group ◽  
Accurate Information ◽  
The Public ◽  
Patient Version

INTRODUCTION:As the Health Technology Assessment (HTA) community moves towards greater levels of Patient and Public Involvement (PPI), the need to communicate with the public about the results and impact of HTA, and of PPI itself, is also increasing. DECIDE was a European Commission funded collaborative project arising from the GRADE working group, which developed and evaluated strategies for effectively communicating the recommendations from clinical guidelines to a multiple stakeholders. The Scottish Intercollegiate Guidelines Network (SIGN) led the work stream on patients and the public (1, 2). We extended the findings to develop a patient/public version of an HTA on Antimicrobial Wound Dressings (AWDs). The clinical and cost effectiveness evidence was inconclusive (3) which increased the importance of engagement with clinical and patient/public stakeholders.METHODS:A literature review, and a series of focus groups and user testing informed the development of a set of principles for designing patient versions of guidelines (1,2). Using these principles developed by the DECIDE collaboration, a patient version of the HTA was developed, in partnership with public volunteers and a standing public communications advisory group.RESULTS:We incorporated key facilitators of usability, such as distinct branding as material for the public, a clearly communicated purpose, and the layering of information. Other facilitators included a “friendly” and accessible tone which was achieved by the use of colour, icons, simple language and charts, and brief chunked text. While feedback about clarity, design and usefulness was generally positive, some public reviewers were concerned by the level of uncertainty and complexity in the findings.CONCLUSIONS:Using the principles from the DECIDE project, it is feasible and useful to develop public versions of an HTA report. The patient version is currently informing the development of educational material for patients/public about chronic wounds and AWDs by the Scottish Government. However, it remains a challenge to balance the complexity and uncertainty underlying evidence-based recommendations, with the need to provide accessible, understandable, and yet accurate information about them for the public.

OP114 The Public's Role In Understanding The Value Of Health Technologies

2018 ◽  
Vol 34 (S1) ◽  
pp. 43-44
Author(s):  
Tania Stafinski ◽  
Jackie Street ◽  
Devidas Menon
Keyword(s):  
Decision Making ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Health Technology ◽  
Informed Decision ◽  
Informed Decision Making ◽  
The Public ◽  
Health Technologies ◽  
Decision Making Processes ◽  
Definition Of

Introduction:Increasingly, health technology assessment (HTA) organizations have instituted mechanisms for involving patients in assessment and review processes. The reasons are obvious—to understand the “patient experience” with a disease and to ensure that patient perspectives are considered during deliberations about the value of new treatments. More recently there have been efforts to engage the public in HTAs and HTA-informed decision-making processes. However, the goals of these efforts have not been well articulated. This may be attributable to the lack of a shared definition of “the public”. The objective of this study was to develop a common understanding of the term “the public” within the context of HTA.Methods:The following were conducted: a survey of HTA organizations; a systematic review; consultation with Health Technology Assessment international's Special Interest Group on Patient and Citizen Involvement; and a workshop comprising representatives from patient organizations, industry, and HTA bodies in Canada.Results:In many HTA processes, the terms “public” and “patients” are synonymous. Definitions found in scholarly articles vary and depend on the rationale for involving the public in a particular issue. Through consultations it became clear that, in the context of HTA, the definition depends on understanding what is missing from current deliberations around the value of new health technologies. There was consensus among workshop participants that: (i) “patients” and “the public” are not the same; (ii) the role of the public may be to ensure societal values are reflected in HTAs and HTA-informed decision-making processes (e.g. serving an audit function); and (iii) a legitimate definition of “the public” could be: “A non-aligned community member with no commercial or professional interest in the HTA process who is not a patient or member of a stakeholder group”.Conclusions:Consensus on the use of the terms “patient” and “public” will support rigorous, evidence-based public and patient engagement in HTA. The proposed definition indicates a way forward in this debate.

OP92 Addressing Challenges Of Implementing A Health Technology Assessment Framework In South Africa

2017 ◽  
Vol 33 (S1) ◽  
pp. 41-42
Author(s):  
Jani Mueller
Keyword(s):  
South Africa ◽  
Health Care ◽  
Decision Making ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Health Technology ◽  
Healthcare Sector ◽  
Public And Private ◽  
The Public ◽  
Health Technologies

INTRODUCTION:South Africa is in the process of providing comprehensive health insurance to all its citizens, thus paving the pathway for Health Technology Assessment (HTA) to play a significant role in provision of safe and effective healthcare. The National Department of Health (DoH) has a published framework and Health Technology Act and strategies since the 1990s to improve health outcomes, and service and delivery of care. The purpose of this study is to explore challenges faced in the implementation of the framework and policies.METHODS:The study will be based on review and analysis of health technology policies and legislations introduced in South Africa since the 1990s. These documents are available from the DoH archive. The review from this grey literature was supplemented by information collected from a self-completion questionnaire, which was distributed to key stakeholders. Respondents were identified by direct contact with ministries of health and professional bodies, and included health professionals from the public and private healthcare sector, for example, practitioners, experts from hospitals, and industry representatives. The questionnaire addressed issues pertaining to decision making regarding health service delivery and the status of HTA in the country.RESULTS:The framework lays out the strategy to facilitate appropriate utilization of health technologies and includes among others, an HTA section. Fragmented use of HTA or parts thereof has been observed in the public and private health care sector. Furthermore, the respondents pointed out that decisions on health technology can be political, institutional or professionally driven whereas they all agreed that a formal and institutional implementation of HTA would improve healthcare service.CONCLUSIONS:The goal to achieve universal health care provides an excellent window of opportunity for formal use of HTA in policy- and decision-making. However, (i) the inadequate number of trained professionals and education and training opportunities (ii) lack of awareness and understanding of the principles of HTA and its impact on the improvement of health care are among the many challenges faced by the system. It has also been observed that national and regional champions can act as change agents and would have a snowball effect.

Patient and public involvement in health technology assessment: update of a systematic review of international experiences

2021 ◽  
Vol 37 ◽  
Author(s):  
Marie-Pierre Gagnon ◽  
Mylène Tantchou Dipankui ◽  
Thomas G. Poder ◽  
Julie Payne-Gagnon ◽  
Gisèle Mbemba ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Barriers And Facilitators ◽  
Current Evidence ◽  
Lack Of Information ◽  
Decision Making Processes

Abstract Objective To summarize current evidence on patient and public involvement (PPI) in health technology assessment (HTA) in order to synthesize the barriers and facilitators, and to propose a framework to assess its impact. Methods We conducted an update of a systematic review published in 2011 considering the recent scientific literature (qualitative, quantitative, and mixed-methods studies). We searched papers published between March 2009 (end of the initial search) and December 2019 in five databases using specific search strategies. We identified other publications through citation tracking and contacting authors of previous related studies. Reviewers independently selected relevant studies based on prespecified inclusion and exclusion criteria. We extracted information using a pre-established grid. Results We identified a total of 7872 publications from the main search strategy. Ultimately, thirty-one distinct new studies met the inclusion criteria, whereas seventeen studies were included in the previous systematic review. PPI is realized through two main strategies: (i) patients and public members participate directly in decision-making processes (participation) and (ii) patients or public perspectives are solicited to inform decisions (consultation or indirect participation). This review synthesizes the barriers and facilitators to PPI in HTA, and a framework to assess its impact is proposed. Conclusion The number of studies on patients or public involvement in HTA has dramatically increased in recent years. Findings from this updated systematic review show that PPI is done mostly through consultation and that direct involvement is less frequent. Several barriers to PPI in HTA exist, notably the lack of information to patients and public about HTA and the lack of guidance and policies to support PPI in HTA.

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

2020 ◽  
Vol 36 (2) ◽  
pp. 87-95
Author(s):  
Jackie Street ◽  
Tania Stafinski ◽  
Edilene Lopes ◽  
Devidas Menon
Keyword(s):  
Decision Making ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Operational Definition ◽  
Patient And Public Involvement ◽  
The Public ◽  
The World

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.

scholarly journals EVALUATION OF PATIENT AND PUBLIC INVOLVEMENT INITIATIVES IN HEALTH TECHNOLOGY ASSESSMENT: A SURVEY OF INTERNATIONAL AGENCIES

2017 ◽  
Vol 33 (6) ◽  
pp. 715-723 ◽  
Author(s):  
Laura Weeks ◽  
Julie Polisena ◽  
Anna Mae Scott ◽  
Anke-Peggy Holtorf ◽  
Sophie Staniszewska ◽  
...  
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Participant Satisfaction ◽  
The Public ◽  
International Agencies ◽  
Evaluation Strategies ◽  
And Training

Objectives: Although there is increased awareness of patient and public involvement (PPI) among health technology assessment (HTA) organizations, evaluations of PPI initiatives are relatively scarce. Our objective as members of Health Technology Assessment International's (HTAi's) Patient and Citizen Involvement Group (PCIG) was to advance understanding of the range of evaluation strategies adopted by HTA organizations and their potential usefulness.Methods: In March 2016, a survey was sent to fifty-four HTA organizations through the International Network of Agencies for Health Technology Assessment (INAHTA) and contacts of members of HTAi's PCIG. Respondents were asked about their organizational structure; how patients and members of the public are involved; whether and how PPI initiatives have been evaluated, and, if so, which facilitators and challenges to evaluation were found and how results were used and disseminated.Results: Fifteen (n = 15) programs from twelve countries responded (response rate 27.8 percent) that involved patients (14/15) and members of the public (10/15) in HTA activities. Seven programs evaluated their PPI activities, including participant satisfaction (5/7), process (5/7) and impact evaluations (4/7). Evaluation results were used to improve PPI activities, identify education and training needs, and direct strategic priorities. Facilitators and challenges revolved around the need for stakeholder buy-in, sufficient resources, senior leadership, and including patients in evaluations.Conclusions: A small but diverse set of HTA organizations evaluate their PPI activities using a range of strategies that reflect the range of rationales and approaches to PPI in HTA. It will be important for HTA organizations to draw on evaluation theories and methods.

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