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1.
Res Involv Engagem ; 10(1): 60, 2024 Jun 11.
Artículo en Inglés | MEDLINE | ID: mdl-38863035

RESUMEN

BACKGROUND: Rather than being perceived as merely 'part of the problem', the perspectives and experiences of young people play a pivotal role in devising effective solutions for mental health challenges. Two distinct methodologies that aid in this endeavour are 'patient and public involvement' (PPI) and 'responsible research and innovation' (RRI). However, there is a tendency to conflate PPI and RRI practices, leading to ambiguity in their application. Moreover, the extent and nature of young people's involvement in mental health-related projects (namely: research, intervention, product development) employing these methodologies, and the subsequent implications thereof, remain unclear. Consequently, the proposed scoping review aims to identify and analyse literature pertaining to PPI and RRI approaches in mental health projects that engage young people in collaboration. METHODS: The selected databases will be MEDLINE, PsycINFO, PsycArticles, Scopus, Web of Science, IBBS, CINAHL (EBSCO) and ASSIA. Comprehensive searches will span from the inception of each database. A pilot test will be conducted to assess the screening criteria and data extraction form, with two authors independently reviewing titles and abstracts. Full-text articles meeting the inclusion criteria will undergo narrative syntheses, with results presented in tabular format. Feedback on the findings from a youth perspective will be sought from young people within our broader research network, namely Sprouting Minds. The review will adhere to the guidelines outlined by the Joanna Briggs Institute (JBI) and follow the PRISMA-ScR procedures. Inclusion criteria will comprise English-language, primary research peer-reviewed articles focused on Patient and Public Involvement (PPI) or Responsible Research and Innovation (RRI), examining mental health-related research processes, interventions, and products developed in collaboration with young people. Studies employing quantitative, qualitative, and mixed-methods approaches will be considered, while non-journal publications will be excluded. DISCUSSION: The intended scoping review aims to map the literature concerning mental health-related projects that engage with young people through PPI or RRI approaches. The outcomes hold promise for enriching the participatory research domain, particularly in studies centred on young people and their mental well-being. Furthermore, by delineating potential overlaps and distinctions between PPI and RRI, the findings stand to aid mental health researchers and practitioners in making informed decisions about the most suitable approach for their projects when partnering with young individuals. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework (registration: DOI https://doi.org/10.17605/OSF.IO/N4EDB ).


This study aims to understand how young people are involved in mental health projects (namely: research, intervention, and product development) and how their perspectives shape the outcomes. Two approaches, Patient and Public Involvement (PPI) and Responsible Research and Innovation (RRI), are often used in these projects, but it's not clear how they differ or how young people are involved. To explore this, the researchers will review existing literature on mental health projects involving young people. They will search databases for articles that describe or evaluate these projects, focusing on how young people are involved in the research and/or development processes. They will include studies in English that have been peer-reviewed and cover both numerical and text-based research. Young people will be involved to provide feedback from their perspective. This review will follow established guidelines to ensure trustworthiness and transparency. The findings from this review will help researchers and professionals understand the best ways to involve young people in mental health projects. By clarifying the differences between PPI and RRI and highlighting effective strategies, this study aims to improve future research and ultimately benefit young people's mental health.

2.
Front Bioeng Biotechnol ; 12: 1397796, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38863492

RESUMEN

Synthetic biology is designing and creating biological tools and systems for useful purposes. It uses knowledge from biology, such as biotechnology, molecular biology, biophysics, biochemistry, bioinformatics, and other disciplines, such as engineering, mathematics, computer science, and electrical engineering. It is recognized as both a branch of science and technology. The scope of synthetic biology ranges from modifying existing organisms to gain new properties to creating a living organism from non-living components. Synthetic biology has many applications in important fields such as energy, chemistry, medicine, environment, agriculture, national security, and nanotechnology. The development of synthetic biology also raises ethical and social debates. This article aims to identify the place of ethics in synthetic biology. In this context, the theoretical ethical debates on synthetic biology from the 2000s to 2020, when the development of synthetic biology was relatively faster, were analyzed using the systematic review method. Based on the results of the analysis, the main ethical problems related to the field, problems that are likely to arise, and suggestions for solutions to these problems are included. The data collection phase of the study included a literature review conducted according to protocols, including planning, screening, selection and evaluation. The analysis and synthesis process was carried out in the next stage, and the main themes related to synthetic biology and ethics were identified. Searches were conducted in Web of Science, Scopus, PhilPapers and MEDLINE databases. Theoretical research articles and reviews published in peer-reviewed journals until the end of 2020 were included in the study. The language of publications was English. According to preliminary data, 1,453 publications were retrieved from the four databases. Considering the inclusion and exclusion criteria, 58 publications were analyzed in the study. Ethical debates on synthetic biology have been conducted on various issues. In this context, the ethical debates in this article were examined under five themes: the moral status of synthetic biology products, synthetic biology and the meaning of life, synthetic biology and metaphors, synthetic biology and knowledge, and expectations, concerns, and problem solving: risk versus caution.

3.
Internet Interv ; 36: 100740, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38634005

RESUMEN

Context: Digital contact tracing uses automated systems and location technology embedded on smartphone software for efficient identification of individuals exposed to COVID-19. Such systems are only effective with high compliance, yet compliance is mediated by public trust in the system. This work explored the perception of individual's trust and expectation of the broader Test and Trace system in the United Kingdom (UK) with the upcoming release of the National Health Service's (NHS) COVID-19 app as a case example. Methods: Twelve adults underwent online semi-structured interviews in August 2020, prior to public availability of the COVID-19 app. Pragmatic reflexive thematic analysis was applied inductively to explore common themes between participants, using an organic and recursive process (Braun & Clarke, 2019). Results: Themes highlighted features of the technology that would be perceived to be trustworthy (Theme 1), and concerns relating to i) whether users would comply with a T&T system (Theme 2) and ii) how a T&T system would handle user's personal data (Theme 3). Two further themes built on aspects of automation within a T&T system and its impact on trust (Theme 4) and how the media altered perceptions of the T&T system (Theme 5). Conclusions: Participants outlined the need for different user requirements that could be built into the NHS COVID-19 app that would support increased adherence. Concurrently, participants raised questions surrounding personal data and privacy of their data, plus the level of automated versus manual tasks, which impacted perception of trust in the app and wider system. Additionally, themes highlighted that T&T systems do not happen within a vacuum, but within a pre-existing environment influenced by variables such as the media and perception of other's compliance to T&T. Implications: Since it's roll-out, controversies surrounding the UK T&T system include concerns about privacy, stigma and uptake. Considering the current piece of work, which anticipated similar concerns prior to public access to COVID-19 app, engaging with the public may have been an important step in improving the perception and compliance with the app. Principles fundamental to patient and public involvement (PPI) and Responsible Research and Innovation (RRI) such as the inclusion of the public in the early development of research and aligning the outcomes of research and innovation with broader societal values and expectations would have been well-applied to this system and should be applied to future autonomous systems requiring high public uptake.

4.
Chinese Medical Ethics ; (6): 377-383, 2024.
Artículo en Chino | WPRIM (Pacífico Occidental) | ID: wpr-1031312

RESUMEN

The Measures for Ethical Review of Life Sciences and Medical Research Involving Humans responded to the new issues faced by ethical review arising from the development of science and technology, society, and ethics, as well as the requirements of laws and regulations for ethical review. It adapted to the continuous increase of investment in scientific and technological innovation research and the development of biotechnology in China, and expanded the applicable institutions and research types of the ethical review system. Facing the ethical review of life sciences and medical research involving humans is one of the practical forms of responsible research and innovation. Therefore, it is necessary to establish and improve the ethical review system, implement the “subject responsibility” of life sciences and medical research involving humans, carry out classified and hierarchical bioethics education, and enhance the consciousness of researchers, research managers, and students in responsible research and innovation.

5.
Wellcome Open Res ; 8: 310, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37928209

RESUMEN

As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale. Most public audiences do not feel actively connected to science, are oftenunsure of the relevance to their lives and rarely talk to their family and friends about; we term this dis-connection a 'disengaged public audience'. We use a narrative review to explore: (i) UK attitudes towards genetics and genomics and what may influence reluctance to engage with these topics; (ii) innovative public engagement approaches that have been used to bring diverse public audiences into conversations about the technology. Whilst we have found some novel engagement methods that have used participatory arts, film, social media and deliberative methods, there is no clear agreement on best practice. We did not find a consistently used, evidence-based strategy for delivering public engagement about genomics across diverse and broad populations, nor a specific method that is known to encourage engagement from groups that have historically felt (in terms of perception) and been (in reality) excluded from genomic research. We argue there is a need for well-defined, tailor-made engagement strategies that clearly articulate the audience, the purpose and the proposed impact of the engagement intervention. This needs to be coupled with robust evaluation frameworks to build the evidence-base for population-level engagement strategies.

6.
Pathog Glob Health ; : 1-10, 2023 Oct 04.
Artículo en Inglés | MEDLINE | ID: mdl-37791645

RESUMEN

Governing dual-use research of concern (DURC) in the life sciences has become difficult owing to the diversification of scientific domains, digitalization of potential threats, and the proliferation of actors. This paper proposes three approaches to realize bottom-up governance of DURC from laboratory operation to institutional decision-making levels. First, a technological approach can predict and monitor the dual-use nature of the research target pathogens and their information. Second, an interactive approach is proposed in which diverse stakeholders proactively discuss and examine dual-use issues through research practice. Third, a personnel approach can identify the right persons involved in DURC. These approaches suggest that, going beyond self-governance by researchers, collaborative and networked governance involving diverse actors should become essential. This mode of governance can also be seen in light of the management of research use. Therefore, program design by funding agencies and publication screening by journal publishers continuously contribute to governance at the meso-level. Bottom-up governance may be realized by using an appropriately integrated design of these three approaches at the micro-level, such as dual-use prediction and monitoring, stakeholder dialogue, and background checks. Given that the term 'open science' has been promoted to the research community as part of top-down governance, paying due attention on site to research subjects, research practices, and persons involved in research will provide an opportunity to develop a more socially conscious open science.

7.
Front Neurosci ; 17: 1160611, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37781239

RESUMEN

This study is a pilot literature review that compares the interest of neuroethicists and neuroscientists. It aims to determine whether there is a significant gap between the neuroethical issues addressed in philosophical neuroethics journals and neuroscience journals. We retrieved 614 articles from two specialist neuroethics journals (Neuroethics and AJOB Neuroscience) and 82 neuroethics-focused articles from three specialist neuroscience journals (Neuron, Nature Neuroscience, and Nature Reviews Neuroscience). We classified these articles in light of the neuroethical issue in question before we compared the neuroethical issues addressed in philosophical neuroethics with those addressed by neuroscientists. A notable result is a parallelism between them as a general tendency. Neuroscientific articles cover most neuroethical issues discussed by philosophical ethicists and vice versa. Subsequently, there are notable discrepancies between the two bodies of neuroethics literature. For instance, theoretical questions, such as the ethics of moral enhancement and the philosophical implications of neuroscientific findings on our conception of personhood, are more intensely discussed in philosophical-neuroethical articles. Conversely, neuroscientific articles tend to emphasize practical questions, such as how to successfully integrate ethical perspectives into scientific research projects and justifiable practices of animal-involving neuroscientific research. These observations will help us settle the common starting point of the attempt at "ethics integration" in emerging neuroscience, contributing to better governance design and neuroethical practice.

8.
Soc Sci Med ; 337: 116307, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37879264

RESUMEN

Participation of citizens and service users is increasingly commonplace in research, policy and technology development. Alongside this development, social scientists have become increasingly incorporated into large-scale research and innovation projects to facilitate participatory spaces. This requires reflection on the mechanisms, outcomes and, ultimately, the accountabilities of participation. In this paper, we propose the lens of care framework for approaching such reflections. We illustrate its value by using it to account for our role in establishing participatory spaces as part of a European Horizon 2020-funded research and innovation project, entitled EmERGE. We describe the codesign processes we developed and implemented with the aim of enabling heterogeneous voices, distinct experiences and multiple ideas to be articulated to inform the development and implementation of a digital platform for HIV care. We show how the lens of care framework enables us to trouble participation along prior theoretical distinctions between patients/citizens roles, invited/uninvited spaces and inclusive/scientistic voices and provides novel lines of inquiry to capture the relational and emergent processes of participation in digital health innovation. In the EmERGE project, spaces of participation were co-created within and by the community, whose members skilfully arranged the material, social and temporal set-up. Within these spaces we were able to articulate voices, deliberate knowledge and study the potentialities of technology so that initial technological inscriptions of empowerment through information-push were challenged and were, eventually, replaced by more interactive forms of clinician-patient engagement in digital HIV care. Through the lens of care, this paper aims to provide a reflective tool for researchers and practitioners who are involved in the design, implementation, and evaluation of participatory projects.


Asunto(s)
Empoderamiento , Infecciones por VIH , Humanos , Políticas , Infecciones por VIH/terapia
10.
J Med Internet Res ; 25: e48496, 2023 08 28.
Artículo en Inglés | MEDLINE | ID: mdl-37639297

RESUMEN

BACKGROUND: Clinicians' scope of responsibilities is being steadily transformed by digital health solutions that operate with or without artificial intelligence (DAI solutions). Most tools developed to foster ethical practices lack rigor and do not concurrently capture the health, social, economic, and environmental issues that such solutions raise. OBJECTIVE: To support clinical leadership in this field, we aimed to develop a comprehensive, valid, and reliable tool that measures the responsibility of DAI solutions by adapting the multidimensional and already validated Responsible Innovation in Health Tool. METHODS: We conducted a 3-phase mixed methods study. Relying on a scoping review of available tools, phase 1 (concept mapping) led to a preliminary version of the Responsible DAI solutions Assessment Tool. In phase 2, an international 2-round e-Delphi expert panel rated on a 5-level scale the importance, clarity, and appropriateness of the tool's components. In phase 3, a total of 2 raters independently applied the revised tool to a sample of DAI solutions (n=25), interrater reliability was measured, and final minor changes were made to the tool. RESULTS: The mapping process identified a comprehensive set of responsibility premises, screening criteria, and assessment attributes specific to DAI solutions. e-Delphi experts critically assessed these new components and provided comments to increase content validity (n=293), and after round 2, consensus was reached on 85% (22/26) of the items surveyed. Interrater agreement was substantial for a subcriterion and almost perfect for all other criteria and assessment attributes. CONCLUSIONS: The Responsible DAI solutions Assessment Tool offers a comprehensive, valid, and reliable means of assessing the degree of responsibility of DAI solutions in health. As regulation remains limited, this forward-looking tool has the potential to change practice toward more equitable as well as economically and environmentally sustainable digital health care.


Asunto(s)
Inteligencia Artificial , Liderazgo , Humanos , Reproducibilidad de los Resultados , Consenso , Investigadores
11.
Front Res Metr Anal ; 8: 1157218, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37492234

RESUMEN

Efforts to reduce global greenhouse gas emissions have had limited success. For many, the hopes rest on new energy innovations to advance the energy transition process. In this paper, we develop a Responsible Research and Innovation (RRI) base indicator system to steer the design of innovations in the field of energy transition innovations and, thus, improve social acceptance of these innovations. We propose a guideline for its application to assist R&D performing organizations and funding organizations in the design, selection, and communication of research proposals. The indicator system is intended to promote early integration of environmental and social aspects, support the formation of teams aware of the different responsibility aspects of innovation, and monitor progress in regard to relevant RRI dimensions.

12.
Trends Biotechnol ; 41(11): 1327-1331, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37355443

RESUMEN

Blue Biotechnology is developing rapidly worldwide. However, the Nagoya Protocol (NP), Responsible Research and Innovation (RRI) and other regulatory requirements in this field are falling behind. This article identifies the main RRI, NP, and regulatory gaps and provides key recommendations to mitigate these challenges.

13.
Public Underst Sci ; 32(6): 676-690, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37092655

RESUMEN

Responsible Research and Innovation calls for comprehensive public and stakeholder involvement. Its specific requirements, however, have raised criticism concerning the limitation of engagement opportunities for actors like Civil Society Organizations that do not share mainstream perspectives on technological innovations. Our article investigates the engagement of critical Civil Society Organizations in public debates and dialogues on synthetic biology and asks how they contribute to opening up respective debates. Based on three case studies, we show how Civil Society Organizations engage in and frame the debate on synthetic biology in different organizational formats. We find that Civil Society Organizations have explicitly challenged visions of a sustainable future by airing concerns about its risks and adverse impacts and engage in ontological debates about synthetic biology. Yet, we argue that different engagement formats are needed to ensure a diverse public debate on synthetic biology.


Asunto(s)
Biología Sintética , Organizaciones , Disentimientos y Disputas
14.
Front Res Metr Anal ; 8: 1112106, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37008285

RESUMEN

This article explores whether and in what way it is possible to employ toolkits for responsible research and innovation (RRI toolkits) as mechanisms for ensuring the legacy of RRI in research projects. Based on a review of the concept of responsible research and innovation as well as existing toolkits in the area, the article offers an account of the development of an RRI toolkit in the context of the EU- funded Human Brain Project. This toolkit is designed to integrate insights and practices of responsible research and innovation developed over a 10 year period into the project legacy, the EBRAINS research infrastructure. The article suggests that toolkits have the potential to contribute to ensuring a long- lasting legacy of work undertaken in responsible research and innovation, but that this potential requires further support from institutions and the broader research environment to become realized.

15.
Int J Health Plann Manage ; 38(4): 967-985, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36992612

RESUMEN

AIM: To foster equity and make health systems economically and environmentally more sustainable, Responsible Innovation in Health (RIH) calls for policy changes advocated by mission-oriented innovation policies. These policies focus, however, on instruments to foster the supply of innovations and neglect health policies that affect their uptake. Our study's aim is to inform policies that can support RIH by gaining insights into RIH-oriented entrepreneurs' experience with the policies that influence both the supply of, and the demand for their innovations. METHODS: We recruited 16 for-profit and not-for-profit organisations engaged in the production of RIH in Brazil and Canada in a longitudinal multiple case study. Our dataset includes three rounds of interviews (n = 48), self-reported data, and fieldnotes. We performed qualitative thematic analyses to identify across-cases patterns. FINDINGS: RIH-oriented entrepreneurs interact with supply side policies that support technology-led solutions because of their economic potential but that are misaligned with societal challenge-led solutions. They navigate demand side policies where market approval and physician incentives largely condition the uptake of technology-led solutions and where emerging policies bring some support to societal challenge-led solutions. Academic intermediaries that bridge supply and demand side policies may facilitate RIH, but our findings point to an overall lack of policy directionality that limits RIH. CONCLUSION: As mission-oriented innovation policies aim to steer innovation towards the tackling of societal challenges, they call for a major shift in the public sector's role. A comprehensive mission-oriented policy approach to RIH requires policy instruments that can align, orchestrate, and reconcile health priorities with a renewed understanding of innovation-led economic development.


Asunto(s)
Programas de Gobierno , Política de Salud , Humanos , Brasil , Canadá , Estudios Longitudinales
16.
Account Res ; 30(5): 276-283, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36708135

RESUMEN

We assess Radder's criticisms of the Netherlands Code of Conduct for Research Integrity and show that they either miss their mark or depend on controversial background assumptions about the purpose of the Code. Although Radder raises important questions about the broader roles and purposes of research in society, his conclusion that the Code should be revised in the ways he proposes is unjustified.


Asunto(s)
Códigos de Ética , Masculino , Humanos , Países Bajos
17.
Agric Human Values ; 40(2): 455-474, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36340282

RESUMEN

This paper explores the complex relationship between intellectual property (IP) and the transdisciplinary collaborative design (co-design) of new digital technologies for agriculture (AgTech). More specifically, it explores how prioritizing the capturing of IP as a central researcher responsibility can cause disruptions to research relationships and project outcomes. We argue that boundary-making processes associated with IP create a particular context through which responsibility can, and must, be located and cultivated by researchers working within transdisciplinary collaborations. We draw from interview data and situated IP practices from a transdisciplinary co-design project in Aotearoa New Zealand to illustrate how IP is a fluid boundary-requiring-and-producing object that impels researchers into its management, and produces tensions that need to be noticed and skillfully navigated within research relations. We propose located response-ability as a conceptual tool and practice to reposition IP within the relations that make up a transdisciplinary co-design project, as opposed to prioritizing IP by default without recognizing its possible impacts on collaborative relations and other project aims and accountabilities. This can support researchers practicing responsible innovation in making everyday decisions on how to protect potential IP without disrupting the collaborative relations that make the creation of potential IP possible, and the existence of protected IP relevant and beneficial to project collaborators and wider societal actors. This may help to ensure that societal benefits can be generated, and positive science-society relationships prioritized and preserved, in the design of new AgTech.

18.
Int J Med Inform ; 170: 104933, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36521423

RESUMEN

BACKGROUND: Digital health solutions that operate with or without artificial intelligence (D/AI) raise several responsibility challenges. Though many frameworks and tools have been developed, determining what principles should be translated into practice remains under debate. This scoping review aims to provide policymakers with a rigorous body of knowledge by asking: 1) what kinds of practice-oriented tools are available?; 2) on what principles do they predominantly rely?; and 3) what are their limitations? METHODS: We searched six academic and three grey literature databases for practice-oriented tools, defined as frameworks and/or sets of principles with clear operational explanations, published in English or French from 2015 to 2021. Characteristics of the tools were qualitatively coded and variations across the dataset identified through descriptive statistics and a network analysis. FINDINGS: A total of 56 tools met our inclusion criteria: 19 health-specific tools (33.9%) and 37 generic tools (66.1%). They adopt a normative (57.1%), reflective (35.7%), operational (3.6%), or mixed approach (3.6%) to guide developers (14.3%), managers (16.1%), end users (10.7%), policymakers (5.4%) or multiple groups (53.6%). The frequency of 40 principles varies greatly across tools (from 0% for 'environmental sustainability' to 83.8% for 'transparency'). While 50% or more of the generic tools promote up to 19 principles, 50% or more of the health-specific tools promote 10 principles, and 50% or more of all tools disregard 21 principles. In contrast to the scattered network of principles proposed by academia, the business sector emphasizes closely connected principles. Few tools rely on a formal methodology (17.9%). CONCLUSION: Despite a lack of consensus, there is a solid knowledge-basis for policymakers to anchor their role in such a dynamic field. Because several tools lack rigour and ignore key social, economic, and environmental issues, an integrated and methodologically sound approach to responsibility in D/AI solutions is warranted.


Asunto(s)
Inteligencia Artificial , Humanos
19.
Front Res Metr Anal ; 7: 1057378, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36506479

RESUMEN

Analyzing the impact of a sustainability agenda in research and innovation on system transition is a critical research topic. This literature stream aims to examine how research and innovation can deal with wicked-problems at a dynamic system level to create more sustainable future systems. However, this study addresses two main issues in the current sustainability transition literature. First, the literature to date offers little insight into concrete implications for the management of innovation processes at the organizational level. Second, sustainability is often addressed as per se desirable. While the concept of Sustainable Innovation (SI) can valuably contribute in addressing the first issue by providing essential features to analyze business management procedures and their broader implications on socio-technical systems, it falls short in addressing the second issue. Essential aspects of sustainability, such as the responsibility for potential future trade-offs through innovation, are not strategically integrated into the current framework. This study argues that without strategic integration of responsibility, there is a risk of contributing to a partially-sustainable-"irresponsible"-socio-technical system change as a result of business innovation activities. Therefore, an extended innovation process model for sustainability to embed responsibility at the core of innovation activities is required. For this purpose, the framework of Responsible Research and Innovation (RRI) is utilized. This paper reports on findings from a systematic literature review of a representative sample of empirical studies from the SI and RRI literature. Thereby, the goal was to extend the understanding of management opportunities within innovation processes for sustainability through the implementation of RRI principles, in order to create sustainable socio-technical systems.

20.
Patient Relat Outcome Meas ; 13: 259-272, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36536754

RESUMEN

Background: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. Results: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. Discussion: Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of "expert patients" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

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