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.

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.

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.

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 PATIENT AND PUBLIC INVOLVEMENT IN SCOPE DEVELOPMENT FOR A PALLIATIVE CARE HEALTH TECHNOLOGY ASSESSMENT IN EUROPE

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A40.3-A41 ◽  
Author(s):  
Louise Brereton ◽  
Elizabeth Goyder ◽  
Christine Ingleton ◽  
Clare Gardiner ◽  
Jim Chilcott ◽  
...  
Keyword(s):  
Palliative Care ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Care Health

A voice to be heard: patient and public involvement in health technology assessment and clinical practice guidelines in Malaysia

2021 ◽  
Vol 37 (1) ◽  
Author(s):  
Hanin Farhana Kamaruzaman ◽  
Ku Nurhasni Ku Abd Rahim ◽  
Izzuna Mudla Mohamed Ghazali ◽  
Mohd Aminuddin Mohd Yusof
Keyword(s):  
Clinical Practice ◽  
Health Technology Assessment ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Initial Development ◽  
Limited Health Literacy

Abstract Patient and public involvement (PPI) in health technology assessment (HTA) is widely promoted to ensure that all health-related decisions are made after taking into consideration the viewpoints of important stakeholders. In Malaysia, patients or their representatives have been involved in the development of HTA and Clinical Practice Guidelines (CPG) since 2009 and their influences have been growing steadily over the years. This paper aimed to describe the journey, achievements, challenges, and future direction of the PPI throughout all stages of the development and implementation of HTA and CPG in Malaysia. Currently, in Malaysia, patients or their representatives are mainly involved during the initial development of HTA and CPG drafts as well as during the internal and external reviews. Additionally, they are also encouraged to be involved during the implementation of HTA and CPG recommendations. Although their involvement in this aspect has slowly increased over time, challenges remain in the form of limited representativeness of selected patients or carers, uncertainty on the level of patient involvement allowed during the HTA/CPG development processes, and limited health literacy, which affect their ability to contribute meaningfully throughout the processes. Continuous improvement in these processes is important as patients or their representatives play a pivotal role in ensuring transparency, accountability, and credibility throughout the HTA/CPG development and decision-making processes.

scholarly journals Deliberative Processes by Health Technology Assessment Agencies: A Reflection on Legitimacy, Values and Patient and Public Involvement Comment on "Use of Evidence-informed Deliberative Processes by Health Technology Assessment Agencies Around the Globe"

2020 ◽  
Author(s):  
Mireille Goetghebeur ◽  
Marjo Cellier
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Positive Impact ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
What Works ◽  
Deliberative Processes ◽  
Core Issues ◽  
Public And Patient Involvement

Legitimacy of deliberation processes leading to recommendations for public financing or clinical practice depends on the data considered, stakeholders involved and the process by which both of these are selected and organised. Oortwijn et al provides an interesting exploration of processes currently in place in health technology assessment (HTA) agencies. However, agencies are struggling with core issues central to their legitimacy that goes beyond the procedural exploration of Oortwijn et al, such as: how processes reflect the mission and values of the agencies? How they ensure that recommendations are fair and reasonable? Which role should be given to public and patient involvement? Do agencies have a positive impact on the healthcare system and the populations served? What are the drivers of their evolution? We concur with Culyer commentary on the need of learning from doing what works best and that a reflection is indeed needed to "enhance the fairness and legitimacy of HTA."

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.

scholarly journals Role of patients’ organizations in Health Technology Assessment: a Habermasian system and lifeworld perspective

2020 ◽  
pp. 1-4
Author(s):  
Neda Milevska-Kostova ◽  
Sita Ratna Devi Duddi ◽  
Richard J. Cooper
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Involvement ◽  
Public Involvement ◽  
Communicative Action ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Social Theories ◽  
Policy Communities

Abstract Patient and public involvement in Health Technology Assessment (HTA) is gaining increased interest among research and policy communities. Patients’ organizations represent an important link between individual patients and the health system. Social theories are increasingly being used to explain doctor–patient–system interactions, expanding understanding beyond the mere clinical perspective. In this sense, patient involvement in HTA can also be considered through the Habermas’s theory of communicative action. From a Habermasian perspective, HTA as part of the instrumental rationality contributes to an increased efficiency of resource use within the system; however, such rationalization threatens to colonize the lifeworld by making it “increasingly state administered with attenuated possibilities for communicative action as a result of the commercialization and rationalization in terms of immediate returns.” Using Habermasian system/lifeworld framework, this paper explores opportunities and obstacles to patient involvement in HTA, whereby trying to understand current and possible roles of patients’ organizations as a mediating force between HTA as a function of the system and the lifeworld represented by patients.

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.

Sign in / Sign up

Export Citation Format

Share Document