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.

How do values shape technology design? An exploration of what makes the pursuit of health and wealth legitimate in academic spin-offs.

By actively supporting cooperation between academia, clinical settings and industry, several policy initiatives assume that the two policy agendas of health and wealth can be reconciled through the development of health technology. Our goal in this article is to shed light on the way the concurrent pursuit of health and wealth operates in practice by examining the valuation schemes, actions and decisions that shaped technology development in three Canadian spin-offs. Drawing on the sociology of judgement, our analytical framework conceives of technology development as a purposive collective action that unfolds in a normatively heterogeneous context (one pervaded with both corporate and public service mission values and norms). Our qualitative empirical analyses explore four valuation schemes and their corresponding regimes of engagement that characterise why and how technology developers commit themselves to addressing certain clinical, interactional, organisational and economic concerns throughout the development process. Our discussion suggests that the ability to reconcile health and wealth goals is to be found in the moral repertoires that provide meaning to, and render coherent technology developers' participation in corporate activities driven by economic growth.

How to summarize a 6,000-word paper in a six-minute video clip.

As part of our research team's knowledge transfer and exchange (KTE) efforts, we created a six-minute video clip that summarizes, in plain language, a scientific paper that describes why and how three teams of academic entrepreneurs developed new health technologies. Recognizing that video-based KTE strategies can be a valuable tool for health services and policy researchers, this paper explains the constraints and sources of inspiration that shaped our video production process. Aiming to provide practical guidance, we describe the steps and tools that we used to identify, refine and package the key content of the scientific paper into an original video format.

A six-minute video-clip to ponder the values fostered by health technology.

As part of our research team's knowledge transfer and exchange (KTE) initiatives, we developed a six-minute video-clip to enable productive deliberations among technology developers, clinicians and patient representatives. This video-clip summarises in plain language the valuable goals and features that are embedded in health technology and raises questions regarding the direction that should be taken by health care innovations. The use of such video-clips creates unique opportunities for face-to-face deliberations by enabling participants to interact and debate policy issues that are pivotal to the sustainability of health care systems. In our experience, we found that audiovisual-elicitation-based KTE initiatives can fill an important communication gap among key stakeholders: pondering, from a health care system perspective, why and how certain kinds of medical technologies bring a more valuable response to health care needs when compared to others.

Health technology assessment and the media: more compatible than one may think?

While the Health Technology Assessment (HTA) community has acknowledged the importance of public and consumer involvement in the HTA process, very few studies have examined how technology-related findings may be reported by the media to the broader public. This paper compares the content of press articles with the content of three Canadian HTA reports that respectively assess electroconvulsive therapy, first-trimester prenatal screening for Down syndrome, and prostate-specific antigen screening for prostate cancer. We qualitatively and quantitatively analyzed 186 press articles addressing the same technologies. Our results show that beyond stylistic emphasis, there is an important overlap between media coverage of these technologies and the content of HTA reports. Findings also highlight shared interests on which both researchers and journalists could build to enhance the communication of health information to the public.

Alors que le milieu de l'évaluation des technologies de la santé (ETS) reconnaît l'importance du rôle du public et du consommateur dans les processus d'ETS, très peu d'études se sont penchées sur la présentation des résultats au grand public par les médias. Cette étude compare le contenu d'articles de presse avec celui de trois rapports canadiens sur l'ETS, qui évaluent respectivement l'électroconvulsivothérapie, le dépistage prénatal du syndrome de Down au premier trimestre et le test de dépistage de l'antigène prostatique spécifique pour le cancer de la prostate. Nous avons analysé qualitativement et quantitativement 186 articles de presse qui portent sur les mêmes technologies. Nos résultats montrent qu'au-delà des effets de style, il y a un important chevauchement entre la couverture des médias et le contenu des rapports. Les résultats soulignent également qu'il y a des intérêts partagés dont les chercheurs et les journalistes pourraient tirer profit afin de renforcer la communication d'information sur la santé au public.

A mirage of change: family-centered maternity care in practice.

BACKGROUND: Since the 1970s, the movement to "humanize" birth in North America has evolved into "family-centered maternity care," which has focused on providing evidence-based maternity care that is responsive to the needs of women and their families. The objective of this research was to explore women's birth experiences within the context of the numerous changes that have occurred in perinatal care and to determine how information and knowledge acquired about pregnancy and birth influenced women's birth experiences. METHODS: Semi-structured interviews were conducted in prenatal health clinics in Montreal and Vancouver with 36 women before and after birth. RESULTS: Most study participants were unaware of the range of available providers and birth settings. Of the women who were more aware of their options, those selecting a birth center or home birth and midwives had different notions of risk than those who planned a hospital birth. Study participants felt generally well informed, but thought that information sharing, collaborative decision making, or both were inadequate during labor and birth within the hospital setting. CONCLUSIONS: Despite positive changes in recent years, family-centered maternity care in Canada still needs to be improved. Women's ability to use their acquired prenatal knowledge to feel satisfied by their birth experience continues to be undermined by a system of care that does not prioritize women's informed choice. Further systemic change is required to align maternity care with the needs of Canadian birthing women and their families.

How medical specialists appraise three controversial health innovations: scientific, clinical and social arguments.

Medical specialists play a pivotal role in health innovation evaluation and policy making. Their influence derives not only from their expertise, but also from their social status and the power of their professional organisations. Little is known, however, about how medical specialists determine what makes a health innovation desirable and why. Our qualitative study investigated the views of 28 medical specialists and experts from Quebec and Ontario (Canada) on three controversial innovations: electroconvulsive therapy, prostate-specific antigen screening and prenatal screening for Down's syndrome. Our findings indicate that the scientific, clinical and social arguments of medical specialists combine to create a relatively consistent narrative for each innovation. Our comparative analysis suggests that these narratives bring about a 'soft' resolution to controversies, which relies on a more or less tacit understanding of the social desirability of innovations and which sets the stage for their routinisation. Such an unpacking of medical specialists' arguments both for and against new technologies is needed because such arguments may easily be considered authoritative and because there are few forums for debating the social desirability of innovations not generally deemed to be highly controversial.

What medical specialists like and dislike about health technology assessment reports.

OBJECTIVE: To examine how medical specialists view health technology assessment (HTA) and its role in policy-making. METHODS: Semi-structured interviews with 28 medical specialists practising in Quebec and Ontario (Canada) to examine their views on an HTA report relevant to their specialty (prostate-specific antigen screening, electroconvulsive therapy and prenatal screening for Down's syndrome). RESULTS: Medical specialists represent a particularly demanding audience for HTA producers because they are knowledgeable about current studies in their field and often contribute to the evidence base that HTA seeks to synthesize. In all three cases, specialists not only challenged specific points in the content of the HTA reports but also offered different and sometimes conflicting appraisals of the clinical relevance and policy implications. More than just the timeliness and usefulness of HTA findings are at issue. The views of specialists are grounded in a clinical understanding of what counts as evidence and how decisions should be made, a view that contrasts with the societal perspective of HTA. CONCLUSIONS: HTA producers cannot afford to overlook medical specialists who play a key role in the adoption of health technologies. Establishing a transparent dialogue between producers and users of HTA reports could enrich policy recommendations.

Dissemination of health technology assessments: identifying the visions guiding an evolving policy innovation in Canada.

Health technology assessment (HTA) has received increasing support over the past twenty years in both North America and Europe. The justification for this field of policy-oriented research is that evidence about the efficacy, safety, and cost-effectiveness of technology should contribute to decision and policy making. However, concerns about the ability of HTA producers to increase the use of their findings by decision makers have been expressed. Although HTA practitioners have recognized that dissemination activities need to be intensified, why and how particular approaches should be adopted is still under debate. Using an institutional theory perspective, this article examines HTA as a means of implementing knowledge-based change within health care systems. It presents the results of a case study on the dissemination strategies of six Canadian HTA agencies. Chief executive officers and executives (n = 11), evaluators (n = 19), and communications staff (n = 10) from these agencies were interviewed. Our results indicate that the target audience of HTA is frequently limited to policy makers, that three conflicting visions of HTA dissemination coexist, that active dissemination strategies have only occasionally been applied, and that little attention has been paid to the management of diverging views about the value of health technology. Our discussion explores the strengths, limitations, and trade-offs associated with the three visions. Further efforts should be deployed within agencies to better articulate a shared vision and to devise dissemination strategies that are consistent with this vision.

Use of health technology assessment in decision making: coresponsibility of users and producers?

OBJECTIVES: Health technology assessment (HTA) is a policy-oriented form of research designed to inform decision-makers on the introduction, use, and dissemination of health technology. Whereas research on knowledge transfer has focused on knowledge producers, little attention has been given to the user's perspective. This study examines how health-care provider, administrator, and patient associations across Canada use HTA reports and the limitations they encounter when accessing and using scientific knowledge. METHODS: This study draws from semistructured interviews (n=42) conducted with three types of user, located in British Columbia, Alberta, Saskatchewan, Ontario, and Quebec. Applying well-established conceptual categories in knowledge utilization research, our qualitative analyses sought to define more precisely how HTA is used by interviewees as well as the most significant barriers they encounter. RESULTS: The vast majority of users recognize the usefulness and credibility of HTA reports. Of interest, the way they use HTA takes different forms. Although administrators and health-care providers are in a better position than patient associations to act directly on HTA messages--making an instrumental use of HTA--we also found conceptual and symbolic uses across all groups. Our results also indicate that significant organizational, scientific, and material limitations hinder the use of scientific evidence. Overcoming such barriers requires a greater commitment from both HTA producers and users. CONCLUSIONS: This study argues that, to ensure better uptake of HTA, it should become a shared responsibility between HTA producers and various types of user.

Redefining health technology assessment in Canada: diversification of products and contextualization of findings.

OBJECTIVES: While strategies for enhancing the dissemination and impact of Health Technology Assessment (HTA) are now being increasingly examined, the characteristics of HTA production have received less attention. METHODS: This study presents the results of a content analysis of the HTA documents (n = 187) produced by six Canadian agencies from 1995 to 2001, supplemented by interviews with chief executive officers and researchers (n = 40). The goal of this analysis was to characterize the agencies' portfolios and to analyze the challenges these agencies face in responding to the increased demand for HTA. RESULTS: On average, thirty HTA products were issued annually by the agencies. While the bulk of documents produced were full HTA reports (76 percent), two agencies showed significant diversification in their products. Three agencies in particular actively supported the publication of results in scientific journals. Three agencies showed evidence of adapting to different institutional environments by specializing in certain areas (drugs, health services). Overall, a significant portion of the agencies' HTAs contained data on costs (37 percent) and effectiveness (48 percent), whereas ethical and social issues were rarely addressed (17 percent). Most agencies addressed issues and outcomes that did not strictly fall under the typical definition of HTA but that increased the "contextualization" of their findings. CONCLUSIONS: Our discussion highlights four paradoxes and reflects further on challenges raised by the coordination of HTA within large countries and among European states. This study concludes that HTA is being redefined in Canada as HTA agencies offer a more contextualized informational basis, an approach that may prove more compatible with the increased demand for HTA.

Creating a new articulation between research and practice through policy? The views and experiences of researchers and practitioners.

OBJECTIVES: In 1990, the Quebec Social Research Council - a body financing social research in Quebec, Canada - launched a new policy encouraging the development of social research units within health care organizations. Through financial incentives, it encouraged the implementation of long-term collaborations between researchers and practitioners with the purpose of transforming both scientific knowledge production and professional practices. This paper examines the perceptions of researchers and practitioners regarding the attributes and the usefulness of this collaborative research policy. METHODS: A self-administered survey was sent to all the researchers (n = 146; response rate 78.1%) and practitioners (n = 204; response rate 44.1%) involved in the 21 collaborative research teams funded in 1998. T-tests were performed in order to assess the difference between the perceptions of researchers and practitioners in five key dimensions of collaborative research. RESULTS: The results showed that, contrary to expectations, researchers and practitioners shared fairly similar views regarding the various dimensions of collaborative research. They both agreed that their involvement within collaborative research teams had contributed to the development of new skills and practices but had not facilitated their participation in external activities nor their involvement in networks and organizations that influence environments in which public policies and practices are deployed. They also both encountered some difficulties in putting the dimensions that they highly valued into practice. CONCLUSIONS: Collaborative research within health care organizations succeeded in fostering the implementation of new modes of knowledge production and intervention. Nevertheless, special attention needs to be given to the development of strategies to reduce the discrepancies between values and practices.