Transforming Disciplinary Traditions; Comment on “Problems and Promises of Health Technologies: The Role of Early Health Economic Modeling”

Grutters et al show that economic assessments can inform the development of new health technologies at an early stage. This is an important contribution to health services and policy research, which implies a “shift away” from the more traditional forms of academic health economic modeling. Because transforming established disciplinary traditions is both valuable and demanding, we invite scholars to further the discussion on how the value of health innovations should be appraised in view of today’s societal challenges

Épistémologies civiles et institutionnalisation de trois technologies médicales controversées

Les nouvelles technologies médicales suscitent régulièrement des controverses scientifiques et sociales. Pour alimenter l’opinion publique, les journalistes utilisent plusieurs sources, incluant des médecins et des associations de patients qui font valoir divers arguments scientifiques, cliniques, sociaux ou fondés sur des histoires vécues. Dans un tel espace de délibération politique, où la science, la clinique et les trajectoires de vies personnelles se côtoient, comment les politiques publiques deviennent-elles légitimes ? Et quels arguments permettent l’institutionnalisation des innovations médicales ? Cet article explore comment les points de vue des spécialistes médicaux, ceux rapportés par la presse écrite et ceux des associations de patients, s’articulent autour de trois cas spécifiques : le dépistage du syndrome de Down, les électrochocs et le dépistage du cancer de la prostate par antigène prostatique spécifique. Pour chacun des cas, une histoire domine et réussit tant bien que mal à forger une direction claire dans laquelle institutionnaliser l’innovation.New medical technologies often spark scientific and social controversy. In order to inform public opinion, journalists use a number of sources, including doctors and associations of patients who put forward various scientific, clinical and social arguments based on real-life experiences. In this arena of political deliberation, where science, clinical aspects and personal trajectories intersect, how do public policies gain legitimacy ? What arguments lead to the institutionalization of medical innovations ? This article examines the viewpoints of medical specialists, associations of patients and the opinions reported in the written press on three specific medical technologies : screening for Down’s syndrome, electroshock therapy, and prostate-specific antigen screening for prostate cancer. It shows how, in each case, a particular narrative somehow succeeds in forging a clear direction where the institutionalization of medical innovation takes place.Las nuevas tecnologías médicas suscitan regularmente controversias científicas y sociales. Para alimentar la opinión pública, los periodistas utilizan varias fuentes, incluyendo médicos y asociaciones de pacientes que presentan diversos argumentos científicos, clínicos, sociales o fundados en historias vividas. En tal espacio de deliberación política donde cohabitan la ciencia, la clínica y las trayectorias de vida personales ¿cómo las políticas públicas llegan a legitimarse ? ¿Y qué argumentos permiten la institucionalización de las innovaciones médicas ? Este artículo explora cómo se articulan los puntos de vista de los especialistas médicos, aquellos presentados por la prensa escrita y las asociaciones de pacientes alrededor de tres casos específicos : el diagnóstico del síndrome de Down, los electrochoques y el diagnóstico del cáncer de la próstata por medio del antígeno prostático específico. En cada uno de los casos domina una historia y logra, mal que bien, forjar una dirección clara en la cual institucionalizar la innovación

“It’s not just hacking for the sake of it”: a qualitative study of health innovators’ views on patient-driven open innovations, quality and safety

Background Open do-it-yourself (DIY) health innovations raise new dilemmas for patient-oriented and service-oriented scholars and healthcare providers. Our study aimed to generate practical insights into quality and safety issues to patient care raised by two volunteer-run, open DIY solutions: Nightscout Project (patient-driven, open-source software for type 1 diabetes management) and e-NABLE (volunteers who design and three-dimensionally print upper-limb assistive devices). To this end, we examined the views of health innovators who are knowledgeable about medical devices standards and regulations. Methods We applied a multimedia-based, dataelicitation technique to conduct indepth interviews with a diversified sample of 31 health innovators practising in two Canadian provinces (Quebec and Ontario). An exploratory thematic analysis approach was used to identify respondents’ reasoning processes and compare their overall judgements of Nightscout and e-NABLE. Results Respondents pondered the following quality and safety issues: importance of the need addressed; accessibility; volunteers’ ability to develop and maintain a safe solution of good quality; risks involved for users; consequences of not using the solution; and liability. Overall, innovators see Nightscout as a high-risk DIY solution that requires expert involvement and e-NABLE as a low-risk one that fills a hard-to-meet gap. Conclusion Health innovators generally support patient-driven initiatives but also call for the involvement of professionals who possess complementary skills and knowledge. Our findings provide a list of issues healthcare providers may discuss with patients during clinical consultations to document potential risks and benefits of open DIY solutions. To inform new policy approaches, we propose the development of publicly funded umbrella organisations to act as intermediaries between open DIY solutions and regulatory bodies to help them meet quality and safety standard

Comment favoriser la recherche clinique en pédopsychiatrie? Une expérience de recherche-action collaborative

Les recherches cliniques évaluatives sont trop peu nombreuses. Nous décrirons ici un processus de recherche susceptible d'en favoriser la multiplication. Nous rapportons l'étude de cas d'un processus apparenté à la recherche-action collaborative mené par un groupe de cliniciens en pédopsychiatrie. À l'aide des résultats de l'étude et à la lumière des caractéristiques des recherche-actions, nous expliquons pourquoi et comment ce groupe de cliniciens a réussi à instaurer un processus de recherche. Les leçons tirées de cette expérience sont multiples et nous concluons en proposant la recherche-action collaborative comme un modèle dont tout clinicien ou chercheur pourrait s'inspirer en vue de mener une recherche clinique.How to favor clinical research in pedopsychiatry? An experience of a cooperative action-research Clinical evaluative research are far too few. In this article, the authors describe a research process likely to favor its multiplication. They report on a case study of a process resembling a cooperative action-research led by a group of clinicians in pedopsychiatry. With the results and in the light of caracteristics of action-research, they explain why and how this group of clinicians has succeeded in establishing a research process. The lessons drawned from this experience are numerous. The authors conclude by proposing a cooperative action-research as a model that all clinicians could apply to a clinical study.¿Como favorisar la investigación clínica en pedopsyquiatría? Investigaciones evaluativas clínicas no son muy numerosas. Describiremos aquí un proceso de investigación susceptible de favorisar su multiplicación. Relatamos el estudio de caso de un proceso emparentado a la investigación-acción colaborativa conducida por un grupo de clínicos en pedopsiquiatría. Con los resultados del estudio y a la vista de las características de las investigaciones-acción, explicaremos porque y como este grupo de clínicos lograron instaurar un proceso de investigación. Frutos sacados de esta experiencia son múltiples y concluyemos proponiendo la investigación-acción colaborativa como modelo del cual un investigador podria inspirarse en el conducto de una investigación clínica

S’engager à titre de collaborateur bénévole dans un projet de recherche participative : les motivations d’un groupe d’aînés

Cet article rapporte les résultats d’une étude visant l’examen des motivations à la source de l’implication d’aînés au sein d’un projet national de recherche-action. Les données ont été recueillies au moyen d’entrevues en profondeur auprès d’aînés (n=5) engagés dans le volet montréalais du projet. Les résultats révèlent six grandes classes de motivations : changer les choses, utiliser ses habiletés et son expérience, travailler en équipe, faire preuve d’altruisme, conserver un statut et un rôle dans la société et, enfin, agir en lien avec sa philosophie de vie. Ces résultats corroborent en partie ceux qui ont été présentés dans les études antérieures. Cependant, les motivations liées à la poursuite d’activités et de façons de faire expérimentées dans le travail qui précède la retraite ressortent davantage. La discussion aborde les stratégies à privilégier pour faciliter l’implication d’aînés en recherche-action.The purpose of this study was to investigate factors related to the involvement of seniors in a national action-research project. Information was collected by in-depth interviews with the participants involved (n=5) in the Montreal site of the project. The elderly described six main motivations: changing things, using one’s skills and experience, working with a team, being altruistic, maintaining a status and a valued role in society and, finally, acting according to one’s philosophy and ideology of life. These data partly corroborate previous results. However, this study highlights the importance of motivations linked to pursuing activities and ways of doing things developed at work before retirement. Strategies aimed at facilitating the involvement of elderly in action-research projects are presented in the discussion

Anticipatory governance and moral imagination : methodological insights from a scenario-based public deliberation study

The fields of Responsible Research and Innovation (RRI) and participatory foresight seek to establish, and toinclude publics within, anticipatory governance mechanisms. While scenario-based methods can bring to thepublics’ attention the ethical challenges associated to existing technologies, there has been little empirical re-search examining how, in practice, prospective public deliberative processes should be organized to informanticipatory governance. The goal of this article is to generate methodological insights into the way suchmethods can stimulate the public's moral imagination regarding what may (or may not) happen in the future andwhat should (or should not) happen in the future. Our qualitative analyses draw on a public deliberation studythat included videos and online scenarios to support participants’ (n= 57) deliberations about fictional inter-ventions for genetically at-risk individuals. Our findings clarify how participants: (1) challenged key elements ofour scenarios; (2) extended several of their technical and moral prospects; (3) engaged personally with others,including our scenarios’ characters; and (4) mobilized the past creatively to reason about the future. Ourmethodology enabled participants to creatively and empathetically envision complex sociotechnical futures. Yet,important methodological limits should be acknowledged by those who design, implement and use public en-gagement methods to inform anticipatory governance

Understanding the integration of artificial intelligence in healthcare organisations and systems through the NASSS framework: a qualitative study in a leading Canadian academic centre

Background: Artificial intelligence (AI) technologies are expected to “revolutionise” healthcare. However, despite their promises, their integration within healthcare organisations and systems remains limited. The objective of this study is to explore and understand the systemic challenges and implications of their integration in a leading Canadian academic hospital. Methods: Semi-structured interviews were conducted with 29 stakeholders concerned by the integration of a large set of AI technologies within the organisation (e.g., managers, clinicians, researchers, patients, technology providers). Data were collected and analysed using the Non-Adoption, Abandonment, Scale-up, Spread, Sustainability (NASSS) framework. Results: Among enabling factors and conditions, our findings highlight: a supportive organisational culture and leadership leading to a coherent organisational innovation narrative; mutual trust and transparent communication between senior management and frontline teams; the presence of champions, translators, and boundary spanners for AI able to build bridges and trust; and the capacity to attract technical and clinical talents and expertise. Constraints and barriers include: contrasting definitions of the value of AI technologies and ways to measure such value; lack of real-life and context-based evidence; varying patients’ digital and health literacy capacities; misalignments between organisational dynamics, clinical and administrative processes, infrastructures, and AI technologies; lack of funding mechanisms covering the implementation, adaptation, and expertise required; challenges arising from practice change, new expertise development, and professional identities; lack of official professional, reimbursement, and insurance guidelines; lack of pre- and post-market approval legal and governance frameworks; diversity of the business and financing models for AI technologies; and misalignments between investors’ priorities and the needs and expectations of healthcare organisations and systems. Conclusion: Thanks to the multidimensional NASSS framework, this study provides original insights and a detailed learning base for analysing AI technologies in healthcare from a thorough socio-technical perspective. Our findings highlight the importance of considering the complexity characterising healthcare organisations and systems in current efforts to introduce AI technologies within clinical routines. This study adds to the existing literature and can inform decision-making towards a judicious, responsible, and sustainable integration of these technologies in healthcare organisations and systems

Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios : a study protocol describing a multimedia-based deliberative method

Background: The design of health technologies relies on assumptions that affect how they will be implemented, such as intended use, complexity, impact on user autonomy, and appropriateness. Those who design and implement technologies make several ethical and social assumptions on behalf of users and society more broadly, but there are very few tools to examine prospectively whether such assumptions are warranted and how the public define and appraise the desirability of health innovations. This study protocol describes a three-year study that relies on a multimedia-based prospective method to support public deliberations that will enable a critical examination of the social and ethical issues of health technology design. Methods: The first two steps of our mixed-method study were completed: relying on a literature review and the support of our multidisciplinary expert committee, we developed scenarios depicting social and technical changes that could unfold in three thematic areas within a 25-year timeframe; and for each thematic area, we created video clips to illustrate prospective technologies and short stories to describe their associated dilemmas. Using this multimedia material, we will: conduct four face-to-face deliberative workshops with members of the public (n = 40) who will later join additional participants (n = 25) through an asynchronous online forum; and analyze and integrate three data sources: observation, group deliberations, and a self-administered participant survey. Discussion: This study protocol will be of interest to those who design and assess public involvement initiatives and to those who examine the implementation of health innovations. Our premise is that using user-friendly tools in a deliberative context that foster participants’ creativity and reflexivity in pondering potential technoscientific futures will enable our team to analyze a range of normative claims, including some that may prove problematic and others that may shed light over potentially more valuable design options. This research will help fill an important knowledge gap; intervening earlier in technological development could help reduce undesirable effects and inform the design and implementation of more appropriate innovations

Providing Value to New Health Technology: The Early Contribution of Entrepreneurs, Investors, and Regulatory Agencies

Background: New technologies constitute an important cost-driver in healthcare, but the dynamics that lead to their emergence remains poorly understood from a health policy standpoint. The goal of this paper is to clarify how entrepreneurs, investors, and regulatory agencies influence the value of emerging health technologies. Methods: Our 5-year qualitative research program examined the processes through which new health technologies were envisioned, financed, developed and commercialized by entrepreneurial clinical teams operating in Quebec’s (Canada) publicly funded healthcare system. Results: Entrepreneurs have a direct influence over a new technology’s value proposition, but investors actively transform this value. Investors support a technology that can find a market, no matter its intrinsic value for clinical practice or healthcare systems. Regulatory agencies reinforce the “double” value of a new technology—as a health intervention and as an economic commodity—and provide economic worth to the venture that is bringing the technology to market. Conclusion: Policy-oriented initiatives such as early health technology assessment (HTA) and coverage with evidence may provide technology developers with useful input regarding the decisions they make at an early stage. But to foster technologies that bring more value to healthcare systems, policy-makers must actively support the consideration of health policy issues in innovation polic