OP82 Ethical Challenges Related To Engaging Patients And The Public In HTA

2018 ◽  
Vol 34 (S1) ◽  
pp. 30-30
Author(s):  
Meredith Vanstone ◽  
Julia Bidonde ◽  
Ken Bond ◽  
Julia Abelson ◽  
Lisa Schwartz ◽  
...  
Keyword(s):  
Public Engagement ◽  
Information Disclosure ◽  
Ethical Issues ◽  
Policy Decision ◽  
Health Technology ◽  
Ethical Challenges ◽  
Recruitment Methods ◽  
The Public ◽  
Risks And Benefits ◽  
Patient And Public Engagement

Introduction:It is widely recognized that the incorporation of patient and public perspectives can enrich health policy decision-making. Methodological and practical advice on engaging patients and the public has proliferated in recent years, with many health technology assessment (HTA) agencies working to formalize their processes in this area. However, despite growing enthusiasm for patient and public engagement, many ethical issues remain unaddressed including: balancing risks and benefits to participants; recruitment methods; reimbursement for time spent participating; representation; and, information disclosure.Methods:In this critical analysis, we draw on our collective experiences engaging with patients and public in the context of HTA. We use principles from two theories, i) research ethics, and ii) participatory governance, to analyze these challenges. The purpose of this analysis is to explore the ways in which risks and benefits to patient and public participants might be balanced in HTA activities.Results:We begin by describing some ethically challenging experiences we have faced when soliciting views and values from patients and members of the public, some anticipated and some unexpected. These challenges include unexpected disclosures of information, navigating power differentials when working with vulnerable populations, eliciting information about potentially traumatizing experiences, and fairly representing controversial and conflicting opinions. We offer examples about what types of patient engagement activities may subject participants to unreasonable risk, and suggest some guiding principles to help plan ethical patient and public engagement activities.Conclusions:Patient and public engagement requires more than just procedural methodological expertise- it also requires the ability to identify and analyze relevant ethical issues. We posit that health technology assessors have a moral obligation to ensure that the risks of patient and public engagement activities do not outweigh the benefits. We call upon the HTA community to engage in thoughtful deliberation about what can be learned from experiences within HTA and in other contexts.

Ethics and research in psychiatry: Engagement with patients and public

2020 ◽  
pp. 71-82
Author(s):  
Stephani L. Hatch ◽  
Billy Gazard ◽  
Diana Rose
Keyword(s):  
Public Engagement ◽  
Public Involvement ◽  
Ethical Issues ◽  
Patient And Public Involvement ◽  
Psychiatric Research ◽  
Significant Shift ◽  
Service Users ◽  
Participatory Action ◽  
The Public ◽  
Patient And Public Engagement

This chapter explores the ethical issues that arise in psychiatric research in relation to engagement with patients and the general public. Over the past decade, there has been a significant shift in psychiatric and other medical research that places an emphasis on the engagement and involvement of patients and the public. This shift has resulted in changes in the expectations of the way research is conducted and disseminated, specifically regarding the level of scientific knowledge that should be accessible to service users and the public. The chapter begins by making the distinction between patient and public engagement and patient and public involvement. It then discusses basic ethical principles as they relate to engagement, and provides examples of how patient and public engagement is situated within psychiatric research agendas, particularly as it relates to participatory action approaches. It concludes with three brief case studies of engagement approaches in psychiatric research with discussion of ethical issues that may arise in different types of engagement.

The neuroethical future of wearable and mobile health technology

2017 ◽  
Author(s):  
Karola V. Kreitmair ◽  
Mildred K. Cho
Keyword(s):  
Mobile Health ◽  
Ethical Issues ◽  
Health Technology ◽  
The Self ◽  
Ethical Challenges ◽  
Mobile Health Technology ◽  
Healthcare Settings ◽  
Healthcare It ◽  
Mobile Mental Health ◽  
Privacy And Confidentiality

Wearable and mobile health technology is becoming increasingly pervasive, both in professional healthcare settings and with individual consumers. This chapter delineates the various functionalities of this technology and identifies its different purposes. It then addresses the ethical challenges that this pervasiveness poses in the areas of accuracy and reliability of the technology, privacy and confidentiality of data, consent, and the democratization of healthcare. It also looks at mobile mental health apps as a case study to elucidate the discussion of ethical issues. Finally, the chapter turns to the question of how this technology and the associated “quantification of the self” affect traditional modes of epistemic access to and phenomenological conceptions of the self.

scholarly journals Open Science and the Science-Society Relationship

Society ◽  
2019 ◽  
Vol 56 (3) ◽  
pp. 246-255 ◽  
Author(s):  
Martin Lakomý ◽  
Renata Hlavová ◽  
Hana Machackova
Keyword(s):  
Public Engagement ◽  
Science Communication ◽  
Ethical Issues ◽  
Current Knowledge ◽  
Open Science ◽  
Unintended Consequences ◽  
Future Research ◽  
The Public ◽  
Science Society ◽  
Scientific Institutions

Abstract Nowadays, the prevailing trend in the science-society relationship is to engage with the broader public, which is beneficial for the public, scientific institutes, scientific findings, and the legitimacy of science as a whole. This article provides a broad review of the rapidly growing research on Open Science and identifies the gaps in the current knowledge for future research. The review focuses on the science-society relationship, such that knowledge from this field is summarised and systematised. Insight into the most salient topics, including science communication, public engagement with science, public cognition of science, and challenges and potential unintended consequences connected to interactions with the public are examined. The first section of the paper focuses on science communication which involves efforts and approaches to inform the public about science by the most effective means. The section on public engagement reviews how scientists and scientific institutions are increasingly involved in direct interactions with the public and different groups of stakeholders to make science more open. The section focusing on public cognition of science provides information about public knowledge, perception, and trust regarding science, which both determines and is formed by public engagement. Last, risks, ethical issues, and data issues connected to the implementation of Open Science principles are reviewed, as there are many unintended consequences of Open Science which are examined by this current research. In conclusion, research covering the science-society relationship is rapidly growing. However, it brings multiple challenges as well as opportunities which are captured and discussed in a variety of existing studies. This article provides a coherent overview of this field in order to bring more comprehensible knowledge to scientists, scientific institutions, and outreach professionals.

scholarly journals Synthetic biology: below the radar

2017 ◽  
Vol 16 (01) ◽  
pp. R01
Author(s):  
Emma Weitkamp
Keyword(s):  
Synthetic Biology ◽  
Public Engagement ◽  
Ethical Issues ◽  
The Public ◽  
Synthetic Approaches

Englehard et al. provide a wide-ranging look at synthetic biology, from discussion of how one might classify different synthetic approaches to consideration of risk and ethical issues. The chapter on public engagement considers why synthetic biology seems to sit below the public radar.

scholarly journals Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah K. Crockett ◽  
Carolyn Shimmin ◽  
Kristy D. M. Wittmeier ◽  
Kathryn M. Sibley
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Training Needs ◽  
Future Research ◽  
Advisory Group ◽  
Cross Sectional ◽  
The Public ◽  
Patient And Public Engagement ◽  
Manitoba Health ◽  
And Training

Abstract Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

Community views and perspectives on public engagement in health technology assessment decision making

2017 ◽  
Vol 41 (1) ◽  
pp. 68 ◽  
Author(s):  
Sally Wortley ◽  
Allison Tong ◽  
Kirsten Howard
Keyword(s):  
Decision Making ◽  
Focus Groups ◽  
Health Technology Assessment ◽  
Public Participation ◽  
Healthcare System ◽  
Public Engagement ◽  
Technology Assessment ◽  
Health Technology ◽  
Decision Making Process ◽  
The Public

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.

scholarly journals Public engagement in health technology assessment in Brazil: the case of the Trastuzumab public consultation

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Viviane Karoline da Silva Carvalho ◽  
Maria Sharmila Alina de Sousa ◽  
Jorge Otávio Maia Barreto ◽  
Everton Nunes da Silva
Keyword(s):  
Health Technology Assessment ◽  
Public Engagement ◽  
Technology Assessment ◽  
Health Technology ◽  
Social Representation ◽  
Public Consultation ◽  
National Committee ◽  
Risk Category ◽  
The Public ◽  
Negative Score

Abstract Background Public engagement in health technology assessment (HTA) is increasing worldwide. There are several forms of public engagement and it is not always possible to determine which stakeholders participate in the HTA process and how they contribute. Our objective was to investigate which types of social representatives contributed to the public consultation on the incorporation of Trastuzumab for early-stage breast cancer treatment within the public health system in Brazil, held in 2012 by the National Committee for Health Technology Incorporation (CONITEC). Methods A mixed methods approach was used to analyze social representativeness and the composition of the corpus from the public consultation, which consisted of 127 contributions. Three types of analysis were performed using IRaMuTeQ software: classic lexical analysis, descending hierarchical classification and specificities analysis. The contributions were clustered according to the main categories of discourse observed, into four social representation categories: 1) patient representation/advocacy; 2) pharmaceutical industry/advocacy; 3) healthcare professionals; and 4) individual contributions. Results Category 1 contained words related to increased survival due to use of the drug and a low score for words pertaining to studies on Trastuzumab. The word “safety” obtained a positive score only in category 2, which was also the only category that exhibited a negative score for the word “risk”. Category 3 displayed the lowest scores for “diagnosis” and “safety”. The word “efficacy” had a negative score only in category 4. Conclusions Each category exhibited different results for words related to health systems and to key concepts linked to HTA. Our analysis enabled the identification of the most prominent contributions for each category. Despite the promising results obtained, further research is needed to validate this software for use in analyzing public contributions.

scholarly journals Ethical Issues in Dysphagia Management

2020 ◽  
Vol 41 (03) ◽  
pp. 257-265
Author(s):  
Paula Leslie ◽  
Dominika Lisiecka
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Clinical Judgment ◽  
Information Disclosure ◽  
Ethical Issues ◽  
Shared Decision ◽  
Ethical Reflection ◽  
Ethical Challenges ◽  
Swallowing Problems

AbstractDysphagia management is complex and requires balancing individuals' preferences, quality of life, and medical consequences. Ethical challenges are not uncommon given the complexity of dysphagia. Professionals must engage in ethical reflection and shared decision-making when managing dysphagia. Recognizing one's own presuppositions and beliefs may be fundamental to ensuring an ethical approach. The goal of this article is to apply principles of ethics using hypothetical case studies of dysphagia. To this end, we will describe the challenges of working with the disorder of dysphagia; the influence of culture on decision-making about eating and feeding; the importance of information disclosure and respect for individuals' refusal of recommendations; and the interplay of ethical reflection, evidence, and clinical judgment when making complex dysphagia management decisions. These concepts should be kept in mind to ensure compassionate and competent care of the person with eating, drinking, or swallowing problems and their family caregivers.

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