A framework for action to improve patient and public involvement in health technology assessment

2021 ◽  
Vol 38 (1) ◽  
Author(s):  
Aline Silveira Silva ◽  
Karen Facey ◽  
Stirling Bryan ◽  
Dayani Galato
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Mixed Methods Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Rapid Review ◽  
Communication Capacity ◽  
Three Phase

Abstract Background Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA. Methods This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework. Results According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies. Conclusions Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

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.

scholarly journals Strengthening patient outcome evidence in health technology assessment: a coproduction approach

2021 ◽  
Vol 37 ◽  
Author(s):  
Mark Rasburn ◽  
Heidi Livingstone ◽  
Sarah E. Scott
Keyword(s):  
Patient Outcome ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Stakeholder Engagement ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Stakeholder Relationships ◽  
Patient Organizations

Abstract The National Institute for Health and Care Excellence (NICE) worked with patients and staff from six patient organizations to review existing health technology assessment (HTA) methods and coproduce proposals to improve the following: patient involvement, how patient evidence is identified and considered by committees, and the support offered to patient stakeholders. This engagement identified important factors that HTA bodies need to understand to enable meaningful patient and public involvement (PPI), such as having clearly documented processes, appropriate evidence submission processes, transparent decisions, and suitable support. This work demonstrated the benefits of HTA bodies working collaboratively with patient stakeholders to improve PPI. By doing so, HTA bodies can increase their knowledge and understanding of the barriers faced by patient stakeholders to develop appropriate solutions to remove them. The coproduction approach improved stakeholder engagement methods, provided a better analysis of data, supported the development of meaningful conclusions, and improved stakeholder relationships.

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."

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 PP033 Patient And Public Involvement In Health Technology Assessment: The Brazilian Experience

2017 ◽  
Vol 33 (S1) ◽  
pp. 86-86
Author(s):  
Tacila Mega ◽  
Aline Silva ◽  
Clarice Petramale ◽  
Roberta Rabelo
Keyword(s):  
Health Technology Assessment ◽  
Social Participation ◽  
Technology Assessment ◽  
Clinical Guidelines ◽  
Educational Program ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Mobile App ◽  
List Type

INTRODUCTION:The National Committee for Health Technology Incorporation (CONITEC) (1) was created in 2011, when the participation of civil society in the Health Technology Assessment (HTA) process was formalized in Brazil. According to legislation, patient and public involvement (PPI) in HTA occurs through: public consultations (PC); representation of SUS (Brazilian Public Health System) users in the plenary of CONITEC and by public hearings in relevant cases. Due the incipient culture of social participation in Brazil, strategies involving better communication, direct participation and popular education were developed to broaden and qualify this participation.METHODS:•Case study about PPI strategies developed in 5 years of CONITEC•Analysis of documents and official records from the Brazilian Ministry of Health.RESULTS:Since its creation, the innovations of CONITEC regarding PPI were: creation of specific PC form to reproduce or represent the perspectives of patients and caregivers; summarized versions of technical reports written in a simplified language to improve users involvement; surveys prior to elaborating clinical guidelines, a bi-weekly educational program transmitted by streaming, and the recent launch of an HTA Users Guide and a mobile app.After the implementation of these strategies (which started in 2014), there was an increase of annual contributions, from 2,584 in 2014 to 13,619 in 2015. Most participants were patients, family members or caregivers. Surveys concerning clinical guidelines received about 3,000 contributions. There were thirty-seven published society reports until December 2016. The publication of the HTA Users Guide and other related actions increased the number of accesses to the CONITEC website and its subsection for social participation. The educational program had more than 800 online accesses in five months.CONCLUSIONS:These actions allowed expanding and qualifying PPI beyond what is legally defined, and it is possible to predict an increasingly favorable scenario regarding the patient and public participation in HTA in Brazil.

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 Moving beyond the rhetoric of patient input in health technology assessment deliberations

2017 ◽  
Vol 41 (2) ◽  
pp. 170 ◽  
Author(s):  
Sally Wortley ◽  
Janet Wale ◽  
David Grainger ◽  
Peter Murphy
Keyword(s):  
Health Technology Assessment ◽  
Patient Outcomes ◽  
Technology Assessment ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Public Consultation ◽  
System Level ◽  
Reform Process ◽  
Healthcare Decision Making

At a health system level, the importance of patient and public input into healthcare decision making is well recognised. Patient and public involvement not only provides a mechanism to legitimise decisions, but also contributes to improved translation of these decisions into practice, ultimately leading to better patient outcomes. Recent reviews in the health technology assessment space have identified the need for, and increased use of, patient input through systematic methodologies. Yet, what does this mean in practical terms? This paper outlines both short- and longer-term options for strengthening patient input into health technology assessment deliberations. This is particularly important given the planned reforms in this area and the commitment to public consultation as part of the reform process.

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