A HTA of what? Reframing through including patient perspectives in health technology assessment processes.

OBJECTIVES: Despite increasing emphasis on the inclusion of patient input in health technology assessment (HTA) in Europe in particular, questions remain as to the integration of patient insight alongside other HTA inputs. This paper aims to explore how HTA processes, while ensuring the scientific quality of assessments, "make do" with patient knowledge elicited through patients' involvement mechanisms. METHODS: The qualitative study analyzed institutional HTA and patient involvement in four European country contexts. We combined documentary analysis with interviews with HTA professionals, patient organizations, and health technology industry representatives, complemented with observational findings made during a research stay at an HTA agency. RESULTS: We present three vignettes which showcase how different parameters of assessment become reframed upon the positioning of patient knowledge alongside other forms of evidence and expertise. Each vignette explores patients' involvement during an assessment of a different type of technology and at a different stage of the HTA process. First, cost-effectiveness considerations were reframed during an appraisal of a rare disease medicine based on patient and clinician input regarding its treatment pathway; in the second vignette reframing amounted to what counts as a meaningful outcome measure for a glucose monitoring device; in the third, evaluating pediatric transplantation services involved reframing an option's appropriateness from a question of moral to one of legal acceptability. CONCLUSIONS: Making do with patient knowledge in HTA involves reframing of what is being assessed. Conceptualizing patients' involvement in this way helps us to consider the inclusion of patient knowledge not as complementary to, but as something that can transform the assessment process.

Capturing Emerging Experiential Knowledge for Vaccination Guidelines Through Natural Language Processing: Proof-of-Concept Study.

BACKGROUND: Experience-based knowledge and value considerations of health professionals, citizens, and patients are essential to formulate public health and clinical guidelines that are relevant and applicable to medical practice. Conventional methods for incorporating such knowledge into guideline development often involve a limited number of representatives and are considered to be time-consuming. Including experiential knowledge can be crucial during rapid guidance production in response to a pandemic but it is difficult to accomplish. OBJECTIVE: This proof-of-concept study explored the potential of artificial intelligence (AI)-based methods to capture experiential knowledge and value considerations from existing data channels to make these insights available for public health guideline development. METHODS: We developed and examined AI-based methods in relation to the COVID-19 vaccination guideline development in the Netherlands. We analyzed Dutch messages shared between December 2020 and June 2021 on social media and on 2 databases from the Dutch National Institute for Public Health and the Environment (RIVM), where experiences and questions regarding COVID-19 vaccination are reported. First, natural language processing (NLP) filtering techniques and an initial supervised machine learning model were developed to identify this type of knowledge in a large data set. Subsequently, structural topic modeling was performed to discern thematic patterns related to experiences with COVID-19 vaccination. RESULTS: NLP methods proved to be able to identify and analyze experience-based knowledge and value considerations in large data sets. They provide insights into a variety of experiential knowledge that is difficult to obtain otherwise for rapid guideline development. Some topics addressed by citizens, patients, and professionals can serve as direct feedback to recommendations in the guideline. For example, a topic pointed out that although travel was not considered as a reason warranting prioritization for vaccination in the national vaccination campaign, there was a considerable need for vaccines for indispensable travel, such as cross-border informal caregiving, work or study, or accessing specialized care abroad. Another example is the ambiguity regarding the definition of medical risk groups prioritized for vaccination, with many citizens not meeting the formal priority criteria while being equally at risk. Such experiential knowledge may help the early identification of problems with the guideline's application and point to frequently occurring exceptions that might initiate a revision of the guideline text. CONCLUSIONS: This proof-of-concept study presents NLP methods as viable tools to access and use experience-based knowledge and value considerations, possibly contributing to robust, equitable, and applicable guidelines. They offer a way for guideline developers to gain insights into health professionals, citizens, and patients' experience-based knowledge, especially when conventional methods are difficult to implement. AI-based methods can thus broaden the evidence and knowledge base available for rapid guideline development and may therefore be considered as an important addition to the toolbox of pandemic preparedness.

Doctors as Resource Stewards? Translating High-Value, Cost-Conscious Care to the Consulting Room.

After many policy attempts to tackle the persistent rise in the costs of health care, physicians are increasingly seen as potentially effective resource stewards. Frameworks including the quadruple aim, value-based health care and choosing wisely underline the importance of positive engagement of the health care workforce in reinventing the system-paving the way to real affordability by defining the right care. Current programmes focus on educating future doctors to provide 'high-value, cost-conscious care' (HVCCC), which proponents believe is the future of sustainable medical practice. Such programmes, which aim to extend population-level allocation concerns to interactions between an individual doctor and patient, have generated lively debates about the ethics of expanding doctors' professional accountability. To empirically ground this discussion, we conducted a qualitative interview study to examine what happens when resource stewardship responsibilities are extended to the consulting room. Attempts to deliver HVCCC were found to involve inevitable trade-offs between benefits to the individual patient and (social) costs, medical uncertainty and efficiency, and between resource stewardship and trust. Physicians reconcile this by justifying good-value care in terms of what is in the best interest of individual patients-redefining the currency of value from monetary costs to a patient's quality of life, and cost-conscious care as reflective medical practice. Micro-level resource stewardship thus becomes a matter of working reflexively and reducing wasteful forms of care, rather than of making difficult choices about resource allocation.

Toward High-Value, Cost-Conscious Care - Supporting Future Doctors to Adopt a Role as Stewards of a Sustainable Healthcare System.

PHENOMENON: In order to tackle the persistent rise of healthcare costs, physicians as "stewards of scarce resources" could be effective change agents, extending cost containment efforts from national policy to the micro level. Current programs focus on educating future doctors to deliver "high-value, cost-conscious care" (HVCCC). Although the importance of HVCCC education is increasingly recognized, there is a lag in implementation. Whereas recent efforts generated effective interventions that promote HVCCC in a local context, gaps persist in the examination of system factors that underlie broader successful and lasting implementation in educational and healthcare practices. APPROACH: We conducted a realist evaluation of a program focused on embedding HVCCC in postgraduate education by encouraging and supporting residents to set up "HVCCC projects" to promote HVCCC delivery. We interviewed 39 medical residents and 10 attending physicians involved in such HVCCC projects to examine HVCCC implementation in different educational and healthcare contexts. We held six reflection sessions attended by the program commissioners and educationalists to validate and enrich the findings. FINDINGS: A realist evaluation was used to unravel the facilitators and barriers that underlie the implementation of HVCCC in a variety of healthcare practices. Whereas research activities regularly stop after the identification of facilitators and barriers, we used these insights to formulate four high-value, cost-conscious care carriers: (1) continue to promote HVCCC awareness, (2) create an institutional structure that fosters HVCCC, (3) continue the focus on projects for embedding HVCCC in practice, (4) generate evidence. The carriers support residents, attendings and others involved in educating physicians in training to develop and implement innovative HVCCC projects. INSIGHTS: Strategies to promote physician stewardship go beyond the formal curriculum and require a transformation in the informal educational system from one that almost exclusively focuses on medical discussions to one that also considers value and cost as part of medical decision-making. The HVCCC carriers propose a set of strategies and system adaptations that could aid the transformation toward a HVCCC supporting context.

Navigating complexity of child abuse through intuition and evidence-based guidelines: a mix-methods study among child and youth healthcare practitioners.

BACKGROUND: Dutch child and youth health care (CYHC) practitioners monitor and assess the well-being of children. One of their main concerns is identifying cases of child abuse, which is an arduous and sensitive task. In these contexts, CYHC-practitioners use both evidence-based guidelines aimed at increasing the quality of care through rationalised decision-making, and intuition. These two practices are seen as being at odds with each other, yet empirical research has shown that both are necessary in healthcare. This study aims to unravel how intuition is perceived and used by Dutch CYHC-practitioners when identifying and working with cases of child abuse, and how this relates to their evidence-based guidelines. METHODS: A sequential exploratory mixed-methods design: in-depth semi-structured interviews with CYHC-physicians focused on perceptions on intuition, which were followed by a survey amongst CYHC-practitioners on the recognition and use of the concept. RESULTS: The majority of CYHC-practitioners recognise and use intuition in their daily work, stating that it is necessary in their profession. CYHC-practitioners use intuition to 1) sense that something is 'off', 2) differentiate between 'normal' and 'abnormal', 3) assess risks, 4) weigh secondary information and 5) communicate with parents. At the same time, they warn of its dangers, as it may lead to 'tunnel vision' and false accusations. CONCLUSION: Intuition is experienced as an integral part of the work of CYHC-practitioners. It is understood as particularly useful in cases of child abuse, which are inherently complex, as signs and evidence of abuse are often hidden, subtle and unique in each case. CYHC-practitioners use intuition to manage and navigate this complexity. There is an opportunity for guidelines to support reflection and intuition as a 'good care' practice.

Beyond Volume Indicators and Centralization: Toward a Broad Perspective on Policy for Improving Quality of Emergency Care.

STUDY OBJECTIVE: Policymakers increasingly regard centralization of emergency care as a useful measure to improve quality. However, the clinical studies that are used to justify centralization, arguing that volume indicators are a good proxy for quality of care ("practice makes perfect"), have significant shortcomings. In light of the introduction of a new centralization policy in the Netherlands, we show that the use of volume indicators in emergency care is problematic and does not do justice to the daily care provided in emergency departments (EDs). METHODS: We conducted an ethnographic study in 3 EDs, a primary care facility, and an ambulance call center in the Netherlands, including 109 hours of observation, more than 30 ethnographic interviews with professionals and managers, and 5 semistructured follow-up interviews. RESULTS: We argue that emergency care is a complex, multilayered practice and distinguish 4 different repertoires: acute and complex care, uncertain diagnostics, basic care, and physical, social, and mental care. A "repertoire" entails a definition of what good care is, what professional skills are needed, and how emergency care should be organized. CONCLUSION: The first repertoire of acute and complex care might benefit from centralization. The other 3 repertoires, however, equally deserve attention but are made invisible in policies that focus on the first repertoire and extrapolate the idea of centralization to emergency care as a whole. Emergency care research and policies should take all repertoires into account and pay more attention to alternative measures and indicators beyond volume, eg, patient satisfaction, professional expertise, and collaboration between EDs and other facilities.

PRECEPT: an evidence assessment framework for infectious disease epidemiology, prevention and control.

Decisions in public health should be based on the best available evidence, reviewed and appraised using a rigorous and transparent methodology. The Project on a Framework for Rating Evidence in Public Health (PRECEPT) defined a methodology for evaluating and grading evidence in infectious disease epidemiology, prevention and control that takes different domains and question types into consideration. The methodology rates evidence in four domains: disease burden, risk factors, diagnostics and intervention. The framework guiding it has four steps going from overarching questions to an evidence statement. In step 1, approaches for identifying relevant key areas and developing specific questions to guide systematic evidence searches are described. In step 2, methodological guidance for conducting systematic reviews is provided; 15 study quality appraisal tools are proposed and an algorithm is given for matching a given study design with a tool. In step 3, a standardised evidence-grading scheme using the Grading of Recommendations Assessment, Development and Evaluation Working Group (GRADE) methodology is provided, whereby findings are documented in evidence profiles. Step 4 consists of preparing a narrative evidence summary. Users of this framework should be able to evaluate and grade scientific evidence from the four domains in a transparent and reproducible way.

Making Markets in Long-Term Care: Or How a Market Can Work by Being Invisible.

Many Western countries have introduced market principles in healthcare. The newly introduced financial instrument of "care-intensity packages" in the Dutch long-term care sector fit this development since they have some characteristics of a market device. However, policy makers and care providers positioned these instruments as explicitly not belonging to the general trend of marketisation in healthcare. Using a qualitative case study approach, we study the work that the two providers have done to fit these instruments to their organisations and how that enables and legitimatises market development. Both providers have done various types of work that could be classified as market development, including creating accounting systems suitable for markets, redefining public values in the context of markets, and starting commercial initiatives. Paradoxically, denying the existence of markets for long-term care and thus avoiding ideological debates on the marketisation of healthcare has made the use of market devices all the more likely. Making the market invisible seems to be an operative element in making the market work. Our findings suggest that Dutch long-term care reform points to the need to study the 'making' rather than the 'liberalising' of markets and that the study of healthcare markets should not be confined to those practices that explicitly label themselves as such.

An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings.

BACKGROUND: Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting. OBJECTIVE: To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development. METHODS: Dutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi-structured interviews were conducted with actors involved in guideline development (n = 25). RESULTS: The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence-based guideline development lose credibility as representatives for 'true' patients. DISCUSSION AND CONCLUSIONS: We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision-making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.

Evidence-based decision-making in infectious diseases epidemiology, prevention and control: matching research questions to study designs and quality appraisal tools.

BACKGROUND: The Project on a Framework for Rating Evidence in Public Health (PRECEPT) was initiated and is being funded by the European Centre for Disease Prevention and Control (ECDC) to define a methodology for evaluating and grading evidence and strength of recommendations in the field of public health, with emphasis on infectious disease epidemiology, prevention and control. One of the first steps was to review existing quality appraisal tools (QATs) for individual research studies of various designs relevant to this area, using a question-based approach. METHODS: Through team discussions and expert consultations, we identified 20 relevant types of public health questions, which were grouped into six domains, i.e. characteristics of the pathogen, burden of disease, diagnosis, risk factors, intervention, and implementation of intervention. Previously published systematic reviews were used and supplemented by expert consultation to identify suitable QATs. Finally, a matrix was constructed for matching questions to study designs suitable to address them and respective QATs. Key features of each of the included QATs were then analyzed, in particular in respect to its intended use, types of questions and answers, presence/absence of a quality score, and if a validation was performed. RESULTS: In total we identified 21 QATs and 26 study designs, and matched them. Four QATs were suitable for experimental quantitative study designs, eleven for observational quantitative studies, two for qualitative studies, three for economic studies, one for diagnostic test accuracy studies, and one for animal studies. Included QATs consisted of six to 28 items. Six of the QATs had a summary quality score. Fourteen QATs had undergone at least one validation procedure. CONCLUSIONS: The results of this methodological study can be used as an inventory of potentially relevant questions, appropriate study designs and QATs for researchers and authorities engaged with evidence-based decision-making in infectious disease epidemiology, prevention and control.

The potential and paradoxes of eHealth research for digitally marginalised groups: A qualitative meta-review.

Whilst the transformation towards digital healthcare is accelerating, there is still a substantial risk of excluding people with a distance to the online world. Groups like people with a low socioeconomic position, people with a migrant background or the elderly, who are already most at risk of experiencing health inequalities, are simultaneously experiencing increased digital exclusion. Researchers play a role in determining how eHealth access is framed and can thus impact how the barriers to its use are addressed. This qualitative meta-review critically evaluates the way researchers (as authors) discuss eHealth use in digitally marginalised groups. Specifically, it seeks to understand how eHealth is framed to address existing health systems problems; how the barriers to eHealth use are presented and which solutions are provided in response; and who authors suggest should be responsible for making eHealth work. The results of this review found four paradoxes in how current literature views eHealth use. Firstly, that health systems problems are complex and nuanced, yet eHealth is seen as a simple answer. Secondly, that there are many political, social and health systems-based solutions suggested to address eHealth use, however most of the identified barriers are individually framed. This focus on personal deficits results in misallocating responsibility for making these systemic improvements. Thirdly, although eHealth is meant to simplify the tasks of patients and healthcare workers, these are the groups most often burdened with the responsibility of ensuring its success. Lastly, despite tailoring eHealth to the user being the most suggested solution, researchers generally speak about groups as a homogenous entity - thus rendering tailoring difficult. Ultimately, this review finds that a shift to focus research on addressing systemic issues on a systems level is necessary to prevent further exacerbating existing health inequalities.

Kaleidoscopic integration: Advancing the integration of incommensurable knowledge in healthcare guidelines.

The integration of different types of knowledge in epistemically hierarchical settings remains one of the greatest challenges when developing standards for healthcare practices. In this article, we open up the notion of knowledge integration and empirically examine the various ways in which different types of knowledge interact and can be integrated. To allow us to focus on the diverse forms of knowledge as well as their interaction and integration, we combine Moreira's work on repertoires of evaluation with that of Dewulf and Bouwen on frame interactions. We examine the quest for knowledge integration by studying interactions in the case of the development of the COVID-19 vaccination guideline in the Netherlands, a prime example of the encounter of a wide range and diversity of knowledge that needs to be appraised and integrated into guideline recommendations. Drawing on ethnographic observations of more than 70 guideline development meetings between 2021 and 2022, we first map the different types of knowledge and reasonings used by the guideline developers and subsequently analyze their interactions. We identified eight knowledge interaction patterns, being disconnection, polarization, accommodation, incorporation, reconnection, reconciliation, passive juxtaposition, and kaleidoscopic integration. We hereby draw attention to the various possible knowledge interactions encompassed in the concept of "knowledge integration", especially to those in which integration is achieved while differences and incompatibilities are maintained. Finally, we discuss potential ways to facilitate fruitful knowledge interactions during collaborative work which include the ability to accept and sustain tensions between different types of knowledge and making more explicit use of frame or rather repertoire reflection.

Framing reflexivity in quality improvement devices in the care for older people.

Health care organizations are constantly seeking ways to improve quality of care and one of the often-posed solutions to deliver 'good care' is reflexivity. Several authors stress that enhancing the organizations' and caregivers' reflexivity allows for more situated, and therefore better care. Within quality improvement initiatives, devices that guarantee quality are also seen as key to the delivery of good care. These devices do not solely aim at standardizing work practices, but are also of importance in facilitating reflexivity. In this article, we study how quality improvement devices position the relationship between situated reflection and standardization of work processes. By exploring the work of Michel Callon, Michael Lynch, and Lucy Suchman on reflexivity in work practices, we study the development and introduction of the Care Living Plan. This device aimed to transform care organizations of older people from their orientation towards the system of care into organizations that take a client-centred approach. Our analysis of the construction of specific forms of reflexivity in quality devices indicates that the question of reflexivity does not need to be opposed to standardization and needs to be addressed not only at the level of where reflexivity is organizationally situated and who gets to do the reflecting, but also on the content of reflexivity, such as what are the issues that care workers can and cannot reflect upon. In this paper we point out the theoretical importance of a more detailed empirical study of the framing of reflexivity in care practices.

From "getting things right" to "getting things right now": Developing COVID-19 guidance under time pressure and knowledge uncertainty.

BACKGROUND: At the start of the COVID-19 pandemic, guidance was needed more than ever to direct frontline healthcare and national containment strategies. Rigorous guidance based on robust research was compromised by the emergence of the pandemic and the urgency of need for guidance. Rather than aiming to "get guidance right", guidance developers needed to "get guidance right now". AIM: To examine how guidance developers have responded to the need for credible guidance at the start of the COVID-19 pandemic. METHODS: An exploratory mixed-methods study was conducted among guidance developers. A web-based survey and follow-up interviews were used to examine the most pertinent challenges in developing COVID-19 guidance, strategies used to address these, and perspectives on the implications of the COVID-19 pandemic on future guidance development. RESULTS: The survey was completed by 46 guidance developers. Survey findings showed that conventional methods of guidance development were largely unsuited for COVID-19 guidance, with 80% (n = 37) of respondents resorting to other methods. From the survey and five follow-up interviews, two themes were identified to bolster the credibility of guidance in a setting of extreme uncertainty: (1) strengthening end-user involvement and (2) conjoining evidence review and recommendation formulation. 70% (n = 32) of survey respondents foresaw possible changes in future guidance production, most notably shortening development time, by reconsidering how to balance between rigour and speed for different types of questions. CONCLUSION: "Getting guidance right" and "getting guidance right now" are not opposites, rather uncertainties are always part of guidance development and require guidance developers to balance scientific robustness with usability, acceptability, adequacy and contingency. This crisis points to the need to acknowledge uncertainties of scientific evidence more explicitly and points to mechanisms to live with such uncertainty, thus extending guidance development methods and processes more widely.

Evidence-basing for quality improvement; bringing clinical practice guidelines closer to their promise of improving care practices.

BACKGROUND: Clinical practice guidelines (CPGs) have become central to efforts to change clinical practice and improve the quality of health care. Despite growing attention for rigorous development methodologies, it remains unclear what contribution CPGs make to quality improvement. AIM: This mixed methods study examines guideline quality in relation to the availability of certain types of evidence and reflects on the implications of CPGs' promise to improve the quality of care practices. METHODS: The quality of 62 CPGs was assessed with the Appraisal of Guidelines, Research, and Evaluation (AGREE) instrument. Findings were discussed in 19 follow-up interviews to examine how different quality aspects were considered during development. RESULTS: The AGREE assessment showed that while some quality criteria were met, CPGs have limited coverage of domains such as stakeholder involvement and applicability, which generally lack a 'strong' evidence base (e.g., randomized controlled trials [RCT]). Qualitative findings uncovered barriers that impede the consolidation of evidence-based guideline development and quality improvement including guideline scoping based on the patient-intervention-comparison-outcome (PICO) question format and a lack of clinical experts involved in evidence appraisal. Developers used workarounds to include quality considerations that lack a strong base of RCT evidence, which often ended up in separate documents or appendices. CONCLUSION: Findings suggest that CPGs mostly fail to integrate different epistemologies needed to inform the quality improvement of clinical practice. To bring CPGs closer to their promise, guideline scoping should maintain a focus on the most pertinent quality issues that point developers toward the most fitting knowledge for the question at hand, stretching beyond the PICO format. To address questions that lack a strong evidence base, developers actually need to appeal to other sources of knowledge, such as quality improvement, expert opinion, and best practices. Further research is needed to develop methods for the robust inclusion of other types of knowledge.

Addressing health needs of the homeless in Delhi: Standardising on the issues of Street Medicine practice.

Due to barriers in accessing and using healthcare services, a large proportion of the care homeless populations receive comes from informal providers. In Delhi, one such informal programme, called Street Medicine, provides healthcare outreach to homeless communities. Clinical practice guidelines are set to be developed for Street Medicine teams in India and form the object of this research. This study uses a social-ecological model to understand the barriers facing Street Medicine teams and the homeless as they attempt to address the latter's healthcare needs; coupling it with an analytical approach which situates these barriers as the issues within practice through which standardisation can take place. A qualitative inquiry, comprising three months of observations of Street Medicine outreach and interviews with over 30 key informants, was conducted between April and July 2018. The analysis identified novel barriers to addressing the needs of homeless individuals, which bely a deficit between the design of health and social care systems and the agency homeless individuals possess within this system to influence their health outcomes. These barriers - which include user-dependent technological inscriptions, collaborating with untargeted providers and the distinct health needs of homeless individuals - are the entry points for standardising, or opening up, Street Medicine practices .

Civil-military cooperation in the management of infectious disease outbreaks: a scoping review.

INTRODUCTION: Civil-military cooperation (CMC) in infectious disease outbreak responses has become more common, and has its own cooperation dynamics. These collaborations fit WHO's call for multisectoral cooperation in managing health emergencies according to the emergency management cycle (EMC). However, the literature on CMC on this topic is fragmented. The core aim of this review is to understand the breadth and dynamics of this cooperation by using the EMC as a framework and by identifying challenges and opportunities in the management of outbreaks. METHODS: A scoping review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guideline was conducted. A systematic search for peer-reviewed journals was performed in PubMed, Embase, Web of Science and Scopus. Eligible papers addressed substantive contributions to the understanding of CMC. Papers were categorised by EMC phase and relevant information on study characteristics and areas of cooperation were extracted from the data. Recurring themes on challenges and opportunities in cooperation were identified by means of qualitative interpretation analysis. RESULTS: The search resulted in 8360 papers; 54 were included for analysis. Most papers provided a review of activities or expert opinions. CMC was described in all EMC phases, with the fewest references in the recovery phase (n=1). In total, eight areas of CMC were explored. Regarding the better understanding of cooperative dynamics, the qualitative analysis of the papers yielded five recurring themes covering challenges and opportunities in CMC: managing relations, framework conditions, integrating collective activities, governance and civil-military differences. CONCLUSION: Guided by these five themes, successful CMC requires sustainable relations, binding agreements, transparency, a clear operational perspective and acknowledgement of organisational cultural differences. Early and continuous engagement proves crucial to avoid distrust and tension among stakeholders, frequently caused by differences in strategical goals. Original research on this topic is limited.

Doing 'reciprocity work': The role of fieldworkers in a mass drug administration trial in the Gambia.

In their roles as nurses, data collectors, or other, fieldworkers undertake myriad tasks working intimately with and on the bodies of others - a type of work called 'body work'. This work further includes the micro-political relations shaping these interactions, and studies have shown the importance of these relationships in the success of clinical trials, particularly in the Gambia. This study seeks to expand the concept of body work to understand the roles and interactions of fieldworkers within the trial community, and the effect on a mass drug administration (MDA) clinical trial. We conducted a mixed-methods social science study alongside the MDA in 2018-2019, including in-depth interviews, focus group discussions, and semi-structured observations with the population involved (and not) in the MDA, as well as the MRC fieldworkers. We found that fieldworkers participated in what we call 'reciprocity work'. Through their regular tasks and interactions, they necessarily showed respect and established trust in a way that formed and contributed to reciprocal relationships, the results of which impacted the trial and individuals' autonomy in the decision-making process. Understanding the role of fieldworkers and their reciprocity work is a vital component in comprehending how research ethics are made and conducted in global health research.

Persistent inequitable design and implementation of patient portals for users at the margins.

OBJECTIVE: Diane Forsythe and other feminist scholars have long shown how system builders' tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records continue to reproduce health inequalities in Western societies. To better understand this discrepancy between scholarly awareness of such inequities and mainstream design, this study unravels the (conceptual) assumptions and practices of designers and others responsible for portal implementation in the Netherlands and how citizens living in vulnerable circumstances are included in this process. MATERIALS AND METHODS: We conducted semistructured interviews (n = 24) and questionnaires (n = 14) with portal designers, health professionals, and policy advisors. RESULTS: In daily design practices, equity is seen as an "end-of-the-pipeline" concern. Respondents identify health care professionals rather than patients as their main users. If patients are included in the design, this generally entails patients in privileged positions. The needs of citizens living in vulnerable circumstances are not prioritized in design processes. Developers legitimize their focus with reference to the innovation-theoretical approach of the Diffusion of Innovations. DISCUSSION AND CONCLUSION: Although feminist scholars have developed important understandings of the exclusion of citizens living in vulnerable circumstances from portal design, other academic efforts have profoundly shaped daily practices of portal development. Diane Forsythe would likely have taken up this discrepancy as a challenge by finding ways to translate these insights into mainstream systems design.

The role of social cohesion in the implementation and coverage of a mass drug administration trial for malaria control in the Gambia: An in-depth comparison of two intervention villages.

Mass drug administration (MDA), used increasingly in malaria eradication efforts, involves administering medication to an entire target population regardless of individual-level disease status. This strategy requires high levels of coverage and compliance. Previous studies have assessed individual and structural factors affecting MDA coverage, but there is a need to better understand the influence and expressions of community dynamics and social structures, such as social cohesion. We conducted a social science study concurrent to an MDA clinical trial for malaria control in The Gambia; ethnographic research was conducted prior to, throughout, and between MDA implementation July-November 2018, January-March 2019, and July-November 2019. We assessed how social cohesion, as expressed by the trial population, affects trial coverage through an in-depth ethnographic analysis of two trial villages, using observations, interviews, and focus group discussions with community members who took the trial medication and those who did not. We found that the villages had unique expressions of social cohesion. This was reflected through community participation in the trial implementation and may have affected coverage and compliance. The village with low coverage expressed a form of social cohesion where members followed advice to participate through a hierarchal system but did not actively participate in the MDA or its implementation. The village with high coverage expressed social cohesion as more participatory: individuals took the directive to participate but contextualized the trial implementation to their needs and wants. We analyze these different expressions of social cohesion and the important differences they make for the coverage and compliance levels reached in the two different villages.