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

Author(s):  
Jackie Street ◽  
Tania Stafinski ◽  
Edilene Lopes ◽  
Devidas Menon

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.

2017 ◽  
Vol 33 (S1) ◽  
pp. 51-52
Author(s):  
Laura Weeks ◽  
Julie Polisena ◽  
Anna Scott ◽  
Anke-Peggy Holtorf ◽  
Sophie Staniszewska ◽  
...  

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.


Author(s):  
Neda Milevska-Kostova ◽  
Sita Ratna Devi Duddi ◽  
Richard J. Cooper

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.


2017 ◽  
Vol 33 (6) ◽  
pp. 715-723 ◽  
Author(s):  
Laura Weeks ◽  
Julie Polisena ◽  
Anna Mae Scott ◽  
Anke-Peggy Holtorf ◽  
Sophie Staniszewska ◽  
...  

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.


2017 ◽  
Vol 33 (S1) ◽  
pp. 126-126 ◽  
Author(s):  
Mylène Tantchou ◽  
Marie-Pierre Gagnon ◽  
Thomas Poder

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.


Author(s):  
Per Carlsson

This article describes the development of health technology assessment (HTA) in Sweden, its influence on decision making, and its link with priority setting. Sweden has a well established governmental HTA body, the Swedish Council on Technology Assessment in Health Care (SBU), and an increasing number of regional/local HTA organizations. HTA has had an impact on clinical practice and is used to some extent in policy decisions. Several initiatives have now been taken to develop processes for open priority setting of health-care services. With the establishment of a new agency to undertake reimbursement decisions on pharmaceuticals, and greater patient and public involvement in decision making, it seems inevitable that HTA will play a more important role in priority setting in the near future.


2000 ◽  
Vol 16 (2) ◽  
pp. 299-302 ◽  
Author(s):  
David Banta ◽  
Wija Oortwijn

Health technology assessment (HTA) has become increasingly important in the European Union as an aid to decision making. As agencies and programs have been established, there is increasing attention to coordination of HTA at the European level, especially considering the growing role of the European Union in public health in Europe. This series of papers describes and analyzes the situation with regard to HTA in the 15 members of the European Union, plus Switzerland. The final paper draws some conclusions, especially concerning the future involvement of the European Commission in HTA.


2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A40.3-A41 ◽  
Author(s):  
Louise Brereton ◽  
Elizabeth Goyder ◽  
Christine Ingleton ◽  
Clare Gardiner ◽  
Jim Chilcott ◽  
...  

2009 ◽  
Vol 25 (S1) ◽  
pp. 156-162 ◽  
Author(s):  
Rafał Niżankowski ◽  
Norbert Wilk

In 1989, Poland started to slowly release itself not only from the burden of a half-century of communist indoctrination and soviet exploitation, but also from the consequences of the Semashko model of healthcare organization: low doctors' salaries, primary care based on multispecialty groups, overdeveloped hospital infrastructure, and limited access to sophisticated interventions overcome by patients' unofficial payments.A few years after the 1998 workshop on health technology assessment (HTA) in Budapest, the first HTA reports were elaborated in the National Center for Quality Assessment in Health Care, which could mark the beginning of HTA in Poland. Several individuals and organizations have been involved in developing HTA, both from noncommercial and commercial standpoints.A goal to establish a national HTA agency appeared among the priorities of the Polish Ministry of Health in 2004 and was realized a year later. The Agency for HTA in Poland published guidelines on HTA and established a sound and transparent two-step (assessment-appraisal) process for preparing recommendations on public financing of both drugs and nondrug technologies. The recommendations of the Agency's Consultative Council were warmly welcomed by the public payer. However, the recent major restructuring of the Agency and new drug reimbursement decisions aroused doubts as to keeping transparency of the decision-making processes.


2017 ◽  
Vol 41 (1) ◽  
pp. 68 ◽  
Author(s):  
Sally Wortley ◽  
Allison Tong ◽  
Kirsten Howard

Objectives The aim of the present study was to describe community views and perspectives on public engagement processes in Australian health technology assessment (HTA) decision making. Methods Six focus groups were held in Sydney (NSW, Australia) as part of a broad program of work on public engagement and HTA. Eligible participants were aged ≥18 years and spoke English. Participants were asked about their views and perspectives of public engagement in the HTA decision-making process, with responses analysed using a public participation framework. Results Fifty-eight participants aged 19–71 years attended the focus groups. Responses from the public indicated that they wanted public engagement in HTA to include a diversity of individuals, be independent and transparent, involve individuals early in the process and ensure that public input is meaningful and useful to the process. This was consistent with the public participation framework. Perceived shortcomings of the current public engagement process were also identified, namely the lack of awareness of the HTA system in the general population and the need to acknowledge the role different groups of stakeholders or ‘publics’ can have in the process. Conclusions The public do see a role for themselves in the HTA decision-making process. This is distinct to the involvement of patients and carers. It is important that any future public engagement strategy in this field distinguishes between stakeholder groups and outline approaches that will involve members of the public in the decision-making process, especially if public expectations of involvement in healthcare decision-making continue to increase. What is known about this topic? The views and perspectives of patients and consumers are important in the HTA decision-making process. There is a move to involve the broader community, particularly as decisions become increasingly complex and resources more scarce. What does this paper add? It not been known to what extent, or at what points, the community would like to be engaged with the HTA decision-making process. The present study adds to the evidence base on this topic by identifying features of engagement that may be important in determining the extent of wider public involvement. It is clear that the community expects the system to be transparent, for patients to be involved early in specific processes and the wider community to be able to contribute to the broader vision of the healthcare system. What are the implications for practitioners? A formalised strategy is needed to include the public voice into health technology decisions. With the current level of reform in the healthcare sector and the focus on creating a sustainable healthcare system, there is a real opportunity to implement an approach that not only informs patients and the community of the challenges, but includes and incorporates their views into these decisions. This will assist in developing and adapting policy that is relevant and meets the needs of the population.


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