Members Of Working Group Research Articles

Guidelines for short-term medical missions: perspectives from host countries

BackgroundIn the past decade, there has been increasing guideline development for short-term medical missions (STMMs) traveling from high-income to low- and middle-income countries for the purpose of supporting health care services. The ethics of STMMs is criticized in the literature and there is frequently a lack of host country collaboration. This typically results in guidelines which are developed through the lens of the sending (high-income) countries’ staff and organizations. The aim of this paper is to evaluate an existing best practice guideline document from the perspective of host country participants with knowledge of STMMs from Honduras, Malawi, and the Philippines.MethodsThe guideline used for the evaluation consisted of nine best practice elements that were discerned based on literature and the experience of those working within the field. Semi-structured interviews were conducted in a cross-sectional study with participants (n = 118) from the host countries. Thematic analysis was conducted by two researchers and the results were assessed by working group members to confirm interpretations of the data.ResultsOverall, participants expressed a strong interest in having more structured guidance surrounding STMM practices. There was a positive response to and general acceptance of the proposed STMM guidelines, although participants found the 24-page document onerous to use; a companion checklist was developed. The key themes that emerged from the interviews included collaboration and coordination, care for hard-to-reach communities, capacity building, critical products and essential medical supplies, and opportunity and feasibility.ConclusionsHost input suggests that the guidelines provide structured regulation and coordination of the medical mission process and have the potential to improve the way STMMs are carried out. The guidelines have also proven to be a useful tool for the actual implementation of STMMs and can be a tool to strengthen links and trust between mission teams and local health staff. However, local contexts vary considerably, and guidelines must be adapted for local use. It is recommended that STMM teams work in conjunction with host partners to ensure they meet local needs, increase capacity development of local health workers, and provide continuity of care for patients into the local system.

Networks to strengthen community social capital for suicide prevention in regional Australia: the LifeSpan suicide prevention initiative

IntroductionMental health services are fragmented in Australia leading to a priority being placed on whole-of-community approaches and integration. We describe the LifeSpan suicide prevention intervention developed by the Black Dog Institute that draws upon nine evidence-based community-wide strategies. We examined the suicide prevention Collaborative group at each site. We evaluated how the social capital of the community and service providers changed, and how the brokerage roles of the Collaborative affected integration of effort.MethodsThis was a two phase, explanatory mixed methods study. Participants were LifeSpan Coordinators, The Collaborative and working group members at four LifeSpan sites in New South Wales (three metropolitan/regional, one regional/rural). Quantitative social network data was collected through an online survey and analysed using Gephi software. Qualitative data through focus groups and interviews with Lifespan Coordinators and community stakeholders.ResultsThe social network survey was administered in three sites and was completed by 83 people. Data gave quantitative evidence of increased engagement across key stakeholders in each region who had not previously been working together. Nominations of other collaborators showed this network extended beyond the formal structures of The Collaborative. LifeSpan Coordinators were empirically identified as key players in the networks. Qualitative data was collected from 53 individuals (18 interviews and five focus groups) from across all sites. Participants identified benefits of this collaborative approach including greater capacity to run activities, better communication between groups, identification of “who’s who” locally, improvement in the integration of priorities, services and activities, and personal support for previously isolated members. LifeSpan Coordinators were key to the smooth running of The Collaborative. This may represent a risk to sustainability if they left. The collaboration model that suited metropolitan sites was difficult to sustain in rural sites, but gains were seen in better coordinated postvention efforts.ConclusionLifeSpan Coordinators were noted to be exceptional people who magnified the benefits of collaboration. Geographic proximity was a potent driver of social capital. Initial engagement with local stakeholders was seen as essential but time-consuming work in the implementation phase. Coordinators reported this important work was not always acknowledged as part of their formal role.

NHS overprescribing: the national review recommendations

In September 2021, the Department of Health and Social Care published the report of their national review on overprescribing in the NHS, Good for You, Good for Us, Good for Everybody. Joy Ogden outlines some of the key recommendations of the report and talks to healthcare professionals and members of the review's Short Life Working Group about the practicalities of implementing the proposals.

A suspect cluster of childhood cancer in Valle di Ledro (Province of Trento, Northern Italy). Epidemiological evaluation, risk management, and communication activities, 2018-2020

leukaemia is the most prevalent form of childhood cancer, an overall rare condition in childhood. Even few cases occurring in a small community can cause considerable apprehension among the population. From 2014 to 2017, 4 cases of childhood cancer occurred in Valle di Ledro, a municipality of 5,300 inhabitants in Province of Trento (Northern Italy), and a group of concerned citizens asked provincial health authorities for an investigation. to address the community's health needs by verifying the hypothesis of a cluster of childhood cancer and through effective risk communication activities. retrospective cohort analysis based on data from the Cancer registry of the Autonomous Province of Trento and data collected from hospital discharge records. The communication activities were carried out according to the recommendations published by Epidemiologia&Prevenzione in 2016 in a Supplement "Childhood cancers, risk factors and investigation models for the evaluation of spatio-temporal clusters". Valle di Ledro, a municipality of 5,300 inhabitants in the Province of Trento. The participants in risk communication process were: city council; grassroot committee of concerned parents; health workforce of different services (epidemiology, cancer registry, public health; environmental health; primary health care; personnel of the Environmental Protection Agency; journalists; general population. The participants in the statistical analyses were: children of 0-14 years of age who were diagnosed a cancer from 1998 to 2014 in the Province of Trento (N. 212); leukaemia (N. 84) and acute lymphoblastic leukaemia (N. 66) incident cases in the period 1998-2017 in Trento province. verification of the presence of a cluster of childhood cancers; degree of consensus and collaboration of the different community stakeholders to the survey procedures and acceptance of the final results; atmosphere in public assemblies and feedback in the local press. a total of 212 incident cancer cases in children 0-14 years have been registred in Province of Trento from 1998 to 2014, leukaemia in 35% (N. 74) cases. From 2015 to 2017, another 10 cases of leukaemia occurred, for a total of 84 cases of leukaemia from 1998 to 2017. In the years from 1998 to 2017, in Valle di Ledro, taking the Italian population as reference group, the standardized incidence ratios (SIRs) were the following: cancer, all types 1,47 (IC95% 0,40-3,76); leukaemia 3,39 (IC95% 0,70-9,90), LLA 2,81 (IC95% 0,34-10,16). No cluster emerged from the geographical analyses. From the very beginning of the risk management approach, a decision-making working group was set up applying a participatory approach. Group members included the city council and the local committee of concerned parents and experts from different services of the local health unit. Data analyses was delegated to a technical working group that reported back to the decision-making group. Members of the technical working group were supervised by external experts. Following this approach, it was possible to establish a climate of trust and credibility. The involvement of all stakeholders right from the start in a totally transparent process was a key element of success. the cluster hypothesis was rejected for both childhood cancer (all types) and leukaemia (all types and ALL). The implementation of the risk communication process recommended by the AIE guidelines was successful in establishing a climate of reciprocal trust that allowed to overcome inevitable moments of conflict in a productive manner. Thanks to this positive atmosphere, the communication of the results of the statistical analyses was effective in reassuring the population.

Addressing Child Health Equity Through Clinical Decision-Making.

Addressing Child Health Equity Through Clinical Decision-Making.

Good practice recommendations for information provision for those involved in reproductive donation†.

STUDY QUESTIONWhat information and support should be offered to donors, intended parents and donor-conceived people, in general and in consideration of the availability of direct-to-consumer genetic testing and matching services?SUMMARY ANSWERFor donors, intended parents and donor-conceived offspring, recommendations are made that cover information needs and informed consent, psychosocial implications and disclosure.WHAT IS KNOWN ALREADYTrends indicate that the use of donor-assisted conception is growing and guidance is needed to help these recipients/intended parents, the donors and offspring, navigate the rapidly changing environment in which donor-assisted conception takes place.STUDY DESIGN, SIZE, DURATIONA working group (WG) collaborated on writing recommendations based, where available, on evidence collected from a literature search and expert opinion. Draft recommendations were published for stakeholder review and adapted where relevant based on the comments received.PARTICIPANTS/MATERIALS, SETTING, METHODSPapers retrieved from PUBMED were included from 1 January 2014 up to 31 August 2020, focusing on studies published since direct-to-consumer genetic testing has become more widespread and accessible. The current paper is limited to reproductive donation performed in medically assisted reproduction (MAR) centres (and gamete banks): donation outside the medical context was not considered.MAIN RESULTS AND THE ROLE OF CHANCEIn total, 32 recommendations were made for information provision and support to donors, 32 for intended parents and 27 for donor-conceived offspring requesting information/support.LIMITATIONS, REASONS FOR CAUTIONThe available evidence in the area of reproductive donation is limited and diverse with regards to the context and types of donation. General conclusions and recommendations are largely based on expert opinion and may need to be adapted in light of future research.WIDER IMPLICATIONS OF THE FINDINGSThese recommendations provide guidance to MAR centres and gamete banks on good practice in information provision and support but should also be considered by regulatory bodies and policymakers at a national and international level to guide regulatory and legislative efforts towards the protection of donors and donor-conceived offspring.STUDY FUNDING/COMPETING INTEREST(S)The development of this good practice paper was funded by European Society of Human Reproduction and Embryology (ESHRE), covering expenses associated with the WG meetings, the literature searches and dissemination. The WG members did not receive any payment. The authors have no conflicts of interest to declare.DISCLAIMER This document represents the views of ESHRE, which are the result of consensus between the relevant ESHRE stakeholders and where relevant based on the scientific evidence available at the time of preparation. The recommendations should be used for informational and educational purposes. They should not be interpreted as setting a standard of care, or be deemed inclusive of all proper methods of care nor exclusive of other methods of care reasonably directed to obtaining the same results. They do not replace the need for application of clinical judgement to each individual presentation, nor variations based on locality and facility type. †ESHRE pages content is not externally peer reviewed. The manuscript has been approved by the Executive Committee of ESHRE.

Outreach and Engagement Efforts in Research on Down Syndrome: An NIH INCLUDE Working Group Consensus Statement.

The National Institutes of Health formulated the Outreach and Engagement Working Group in Fall of 2019 to support the objectives of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). This Working Group consisted of a multi-disciplinary team of stakeholders in research on Down syndrome that met to discuss best practices for outreach and engagement to Down syndrome communities, with an emphasis on representation and diversity. This review and consensus paper describes the importance of increasing representation in DS research for future cohort building and summarizes the priority issues identified by the Working Group members. An overview of Working Group activities is then presented, followed by consensus recommendations and a discussion of future opportunities and challenges.

Clinical Validation of Japanese Normal Myocardial Perfusion Imaging Databases Using Semi-conductor Gamma Camera (D-SPECT): Japanese Society of Nuclear Cardiology Working Group Reports.

Objective: A working group (WG) of the Japanese Society of Nuclear Cardiology (JSNC) determined Japanese normal databases of myocardial perfusion single-photon emission computed tomography (SPECT) on semi-conductor gamma camera (D-SPECT), and the aim of this study was to validate its clinical utility. Materials and methods: The normal myocardial perfusion SPECT (MPS) databases of Japanese patients in the 201Tl stress/redistribution protocol (201Tl protocol), 99mTc stress/rest or rest/stress protocol (99mTc protocol), and rest 99mTc/stress 201Tl simultaneous acquisition dual-isotope protocol (SDI protocol) were created by JSNC WG. The WG collected clinical cases for the 201Tl protocol (male/female [m/f], 8/8), 99mTc protocol (m/f, 9/7), and SDI protocol (m/f, 10/10) from WG participating hospitals. Four WG members read those clinical cases on a 17-segment and 5-point scale (0-4). Using the most frequent values as the score for each segment, weighted κ values were calculated with the scores obtained from quantitative perfusion software (QPS). Results: Weighted κ values were as follows; 201Tl stress/female, 0.77; 201Tl rest/female, 0.74; 201Tl stress/male, 0.81; 201Tl rest/male, 0.68; 99mTc stress/female, 0.77; 99mTc rest/female, 0.62; 99mTc stress/male, 0.77; 99mTc rest/male, 0.75; SDI stress/female, 0.87; SDI rest/female, 0.82; SDI stress/male, 0.87; SDI rest/male, 0.85. Conclusions: The diagnostic accuracy of Japanese MPS normal databases on D-SPECT were comparable with nuclear cardiology expert reading and further clinical applications are expected.

A Toolkit for Advancing Age Inclusivity in Higher Education

The pioneering Age-Friendly University (AFU) initiative, endorsed by GSA’s Academy for Gerontology in Higher Education (AGHE), calls for institutions of higher education to respond to shifting demographics and the needs of our aging populations through more age-friendly programs, practices, and partnerships. Over 70 institutions have joined the AFU global network and adopted the 10 AFU guiding principles. In support of the initiative, a GSA-AGHE-AFU workgroup was organized to develop strategies to help GSA members and their campuses explore how they can be more age-inclusive and create pathways to joining the AFU network. One outcome of the workgroup’s efforts was the creation “Tools for Advancing Age Inclusivity in Higher Education”, designed with support from AARP. In this symposium, workgroup members describe this suite of tools which can be used by faculty, students, administrators, and other campus leaders. Montepare will introduce the symposium with an overview of the AFU network and the workgroup’s goals. Morrow-Howell and Schumacher will discuss tools for “Making the Case” with examples from efforts on their campuses. Porter and Bergman will describe tools for “Getting Started” and how campuses can begin to mobilize age-friendly efforts. Andreoletti and June will share tools for “Gaining Momentum” with tips for creating age-friendly campus connections and collaborations. Silverstein and Gugliucci will describe tools for “Assessing and Tracking Success” that can be used at any stage of the process for exploring a campus’s age-friendliness. Information about joining the AFU network will be provided.

ОКРЕМІ ПИТАННЯ СУБ’ЄКТА КРИМІНАЛЬНОГО ПРАВОПОРУШЕННЯ В ПРОЕКТІ НОВОГО КК УКРАЇНИ

The active processes of judicial and law-enforcing systems reformation, as well as of the system of legislation take place in Ukraine. These processes are determined both by internal and external factors, particularly by European integration processes that demand the profound rethinking the standing legislation and bringing it into conformity with the European standards. Due to the abovementioned, the Commission on the issues of legal reform was set up under the President’s of Ukraine Decree No. 584/2019 of August 7, 2019. Several working groups were created within this Commission, and they are aimed at reforming the legislation in different fields. Among these groups, the group on the issues of criminal legislation reformation functions, as well. Among the other tasks, it shall ensure drafting and submitting the agreed proposals on reforming the legal system of Ukraine considering the contemporary challenges and needs of democratic society to the President of Ukraine; in particular, it goes about preparation and generalization of proposals concerning the amendments to the legislation on criminal liability. The working group members, including the leading scholars in the field of criminal law who represent the different higher education establishments, set themselves an ambitious task – to draft the new criminal code. The article deals with the new criminal code in draft provisions concerning the subject of criminal lawbreaking. The author attempts to elucidate the novels proposed during the discussion of the draft that, at the same time, were not included into its content. Primarily, it should be emphasized that there are no radical amendments concerning the subject of criminal lawbreaking, although there were quite rigorous discussions of the newly proposed provisions within the working group. Probably it can be stated that it is this section that has been the least amended if compared to the standing version of the Criminal Code of Ukraine. It means that the physical and sane person that achieved the age from which under criminal code the criminal liability may arise is still considered to be the subject of criminal lawbreaking. Concerning the proposals being discussed primarily, it is worth mentioning the one related to the unification and reducing the general age of criminal liability to fourteen years. The fact is that diversification of the information sources, their openness and availability to the young generation permit us to affirm that nowadays teenagers are more intellectually developed than their peers were a few decades ago. However, the mentioned proposal in general was not supported by the majority of the working group members considering the fact that society is hardly ready to accept such an aggravation of criminal liability of minors and the factual widening the criminalization sphere. The working group considered the proposal on widening the causes of insanity, as well. The concept of insanity and understanding its causes only as the mental disorders or illnesses belong to the most traditional provisions for national criminal law. This leads to the fact that the insanity of a person is related only to a mental disorder or illness, and sometimes is even equated with them. At the same time, it is obvious that the mental activity of a person may be influenced and altered not only by the mental disorders, but also by the other factors of both external and internal character, and such changes do not necessarily possess the pathological and morbid character. Although with the serious objections, but the new approach to the criminal liability for the criminal lawbreakings committed under intoxication still was accepted by the majority of the working group members. Firstly, it was proposed to solve the issue, whether the person`s intoxication arouse of his/her free will or not. And only in case of the so-called voluntary and conscious intoxication, a person shall be held criminally liable on the general grounds.

Guiding the Standardization in Acute Leukemia Service Delivery through the Development of Organizational Requirements

Guiding the Standardization in Acute Leukemia Service Delivery through the Development of Organizational Requirements

The Tension Between Pragmatism and Rigor in Choosing Wisely.

The Tension Between Pragmatism and Rigor in Choosing Wisely.

Is COVID-19 less severe in CML patients than in those with other haematological cancers?

Is COVID-19 less severe in CML patients than in those with other haematological cancers?

Good and bad apples in a Barrel: Opposing ends of within-workgroup safety climate

Conventional measures of safety climate strength based on variance statistics can be used to monitor and manage the lack of consensus in safety climate perceptions among workgroup members. However, any notable deviations in within-workgroup safety climate perceptions may have more pertinent protective or deleterious effect on workplace safety and health than safety climate strength through the work-related social interaction and mutual influence. The present study, utilizing electrical/utility worker sample, showed that upper- and lower-bound of within-workgroup safety climate perception scores can uniquely moderate the associations between safety climate level and its intended outcomes such as safety behaviors and lost work days due to injury. Moreover, both ends of within-workgroup safety climate perception scores showed significant main effects on motor vehicle accident frequency. For the better practice of safety climate management, both ends of safety climate perceptions within workgroups need to be considered in addition to safety climate level and strength.

The benefits and burdens of patient advocacy.

204 Background: Patient advocates share their time and experience to improve cancer research, care, and support. Advocacy can be rewarding and empowering, and survivors and caregivers express a variety of reasons for engaging in advocacy. Yet, advocacy can also come with mental and emotional costs. Challenges include the grief of losing friends to cancer, the related “survivors’ guilt”, and the burden of repeatedly reliving their experience. The National Coalition for Cancer Survivorship (NCCS) conducted a survey to better understand the experience of patient advocates, and actions that organizations can take to recognize and support advocates. Methods: NCCS convened two focus groups with 10 advocates (the “working group”) to understand factors that contribute to advocates feeling rewarded or burned out from advocacy. We reviewed the transcripts to identify themes and reviewed the literature. We developed a survey and included a validated, non-proprietary, single-item burnout measure used for health care professionals. We built the survey online and tested with select working group members. We disseminated the survey to NCCS’ advocacy network, and working group members shared with their networks. Results: As of June 1, we received 176 responses, with the survey will open for another week. The initial data show that the vast majority of respondents find their advocacy work rewarding (97%), empowering (93%), and a positive impact on their lives (96%). At the same time, 29.5% of respondents indicated they have symptoms of burnout, including emotional and physical exhaustion. Respondents report that their advocacy work results in exhaustion (50.7%), sadness (41.1%), and anxiousness (28.7%). More than a third (36.7%) said that grief makes it hard to maintain their work as advocates. A majority manage the demands of their advocacy work by practicing self-care (66.6%) and using coping strategies (62.5%). Advocates shared the specific practices and strategies they used. Less than half (42.5%) said they set boundaries between their advocacy work and their personal life. The final analysis of the survey data will be complete by the end of June 2021. Conclusions: The phrase, “Nothing about us, without us,” has guided the inclusion of patient and caregiver voices in the design of research, care delivery, research grant review, quality measurement, and other aspects of cancer care and cancer research. Yet organizations that ask for the mental and emotional labor of advocates, including patient organizations, researchers, health care professionals, government institutions, and pharmaceutical companies, should understand the costs to advocates and how to best support them. As one respondent said, “Perhaps organizations could set the stage for this work by openly validating the toll that cancer itself takes, and acknowledge that advocacy takes energy and commitment, which may not always be possible to sustain in the face of ongoing treatment or other life complications.”

The Psychology of Blogging Communities: Social Identities and Knowledge Transfer Across Work-Groups

In this article, we propose that blog communities can enhance knowledge transfer in organization. They do so by shaping bloggers' group (subordinate) and organizational (superordinate) identities, which affect knowledge sharing between members of different work-groups in an organization. Building on existing research on psychological identity and on knowledge transfer, we make the case for the benefits of integrating these two research streams; more important, we identify blogging communities as factors in shaping individuals' identities and potentially facilitating knowledge transfer within organizations.

Camara] Encuesta sobre las necesidades de los programas de angioplastia primaria en Espa�a

espanolIntroduccion y objetivos: Las redes regionales de atencion al infarto agudo de miocardio con elevacion del segmento ST presentan grandes diferencias en terminos de organizacion que puede llegar a comprometer sus resultados. La Seccion de Hemodinamica y Cardiologia Intervencionista ha realizado una encuesta entre sus miembros sobre el grado de satisfaccion y la situacion de los programas de angioplastia primaria en Espana. Metodos: Se realizo una encuesta online, abierta y anonima, entre los miembros de la Seccion de Hemodinamica y Cardiologia Intervencionista entre los dias 22 de mayo y 5 de junio de 2018, sobre las necesidades de los programas y el grado de satisfaccion de los profesionales. Resultados: Se obtuvieron 172 respuestas de profesionales, con representacion de 75 centros y 17 comunidades autonomas. El numero de angioplastias en el infarto agudo de miocardio con elevacion del segmento ST por ano y por centro fue de 259 ± 110. El grado de satisfaccion de los profesionales con la aplicacion del Codigo Infarto, asi como el grado de satisfaccion personal, obtuvieron una puntuacion de 7,2 ± 2,2 y 7,2 ± 2,4 puntos sobre 10, respectivamente, aunque con diferencias regionales significativas. Las principales areas de preocupacion detectadas fueron las limitaciones logisticas, la retribucion insuficiente y la falta de descanso. Si fuera posible, un 55% estaria dispuesto a dejar las guardias. Conclusiones: La encuesta ha puesto de manifiesto un alto grado de valoracion del sistema por parte de los profesionales, aunque con diferencias notables entre las comunidades autonomas, y ha permitido detectar disfunciones logisticas, estructurales y retributivas que pueden poner a los programas de angioplastia primaria en situacion de vulnerabilidad. EnglishIntroduction and objectives: ST-segment elevation myocardial infarction (STEMI) regional networks pose great organizational differences that may compromise their results. The Working Group on Hemodynamics and Interventional Cardiology has carried out a survey among its members on the level of satisfaction and the state of primary angioplasty programs in Spain. Methods: On-line, open and anonymous survey, among the Hemodynamics and Interventional Cardiology Working Group members conducted between May 22 and June 5, 2018 on the necessities of the aforementioned programs and the degree of satisfaction of the professionals involved. Results: Answers were obtained from 172 professionals with representation from 75 centers and 17 autonomous communities. The number of angioplasties performed in the STEMI setting per year and per center was 259 ± 110. The degree of satisfaction of the professionals with the application of the Infarction Code and the degree of personal satisfaction scored 7.2 ± 2.2 and 7.2 ± 2.4 points out of 10, respectively, although with significant regional differences. The main areas of concern detected were logistics issues, insufficient paycheck compensations and lack of rest. The 55% were inclined to leave their on-call duties when possible. Conclusions: The survey has revealed a high degree of satisfaction by the professionals involved in STEMI treatment, although with notable differences among different autonomous communities and has allowed detecting logistical, structural and paycheck disturbances that can put primary angioplasty programs in situations of vulnerability.

What to Expect From IEEE 7000: The First Standard for Building Ethical Systems

IEEE 7000™ is a long-awaited standard promising organizations the “ethical specs” <xref ref-type="bibr" rid="ref1" xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink">[1]</xref> that seem to be overdue in engineering roadmaps. One hundred and fifty-four experts were, at some point, involved in IEEE 7000, 34 being Workgroup (WG) members. Seventy-seven experts balloted for its publication in 2021 (93% acceptance rate). In this article, I want to give a short overview of what to expect from IEEE 7000 and how it came about. The 79-page normative standard, involved hundreds of online discussions over five years, engaging self-selected individuals stemming from many cultures (Europe, Middle East, the United States, Australia, and Latin America) and a broad set of professional backgrounds (engineers, philosophers, theologists, consultants, etc.). There was one core question to be answered: How can tech organizations of whatever size and industry build more ethical systems? But what is “ethical?” When laymen hear the word “ethics,” they easily confound it with “morals.” This is not how the IEEE 7000 WG refers to it. Instead, IEEE 7000 guides developers in making their products and services compatible with the ethical values of the communities in which technical products and services are placed and used. The standard gives step-by-step guidance to organizations on how to <italic xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink">care</i> for stakeholder values from the early conception of a system all through its development (and depending on its reading, during later deployment). Organizations that envision building technology for humanity (instead of only profit) get an answer to the Kantian question “How should I act”? I, the engineer, and I, the manager. How should the organization prepare for an IT project? How should it elicit and prioritize values? How can it ensure that prioritized values are ending up in the system-of-interest (SOI)? And how can the organizational and technical engineers transparently share their value mission and effort?

Community-driven network building in health care: creating an exploratory social space to pursue co-production following reforms

Community-driven network building in health care: creating an exploratory social space to pursue co-production following reformsIntroduction:Integrated care requires engaging and empowering people and communities to take an active role in designing and delivering health services (WHO 2019). Their capacities to co-produce health outcomes alongside formal providers are key to assuring sustainability and equity. However collaborative dynamics are compromised by power differentials that limit recognition of community capacities, and are vulnerable to system reforms. Much of the literature on co-production focuses on provider-side initiatives to engage communities. This paper provides an alternate view, exploring how community actors forge network alliances to gain legitimacy and power to co-produce care.Methods:We conducted a longitudinal case study of the network development efforts of a community working group (WG) concerned with access to health services following reforms in Québec, Canada. The WG brought together concerned citizens along with community organizations working with seniors, minorities, immigrants, youth, and people with disabilities. Data were collected over three years from observation, documents and interviews, and social network analysis was conducted to reveal the evolution of relationships among community actors, and between community and public actors. Actor-network theory (Callon) was used to distinguish stages of network maturation. These analyses explored how interactions contributed to identifying and opening pathways for co-production.Results:The WG pursued network building in two stages. A first focused on problem definition: WG members brought their existing networks together to validate access problems perceived in their constituencies, then reached out as a group to public sector contacts to achieve a better understanding of precisely what had changed in the system. In a second stage, the WG mobilized this network of community and public actors to equip a broader public to more effectively draw upon public and community resources to meet their needs. Two factors appeared to impede co-production: the limited influence of front-line actors on public system processes; and discrepancies between community priorities and system mechanisms for participation.Discussion:In the context of reforms, 'problematization' was an especially important stage in network development and showed signs of consensus development on 1. the existence and nature of problems, and 2. interdependencies between public and community actors in identifying and implementing solutions.Conclusions:Network development through the WG enabled community actors to gain the "organizational infrastructure" to participate in collaborative governance (Ansell and Gash 2008). Community efforts can open new spaces to enhance co-productive capacities of people and communities; public provider ability to integrate these capacities into processes is reduced by reforms.Lessons:Network interactions enable the recognition of interdependencies and the development of consensus, and in this way create conditions for collaboration even among actors of different strengths (Benson).The fragility and disruption through reforms of links between public and community actors impede co-production.LimitationsLonger follow-up and comparison with other community initiatives may have provided additional insight into community strategies for gaining legitimacy in co-production.Future researchResearch on factors limiting the effectiveness of longstanding 'concertation' venues after reforms would be helpful, as would exploration of territorial dimensions of co-production between public and community actors in healthcare services.

Weaning children from prolonged enteral nutrition: A position paper.

Enteral nutrition (EN) allows adequate nutritional intake in children for whom oral intake is impossible, insufficient or unsafe. With maturation and health improvements, most children ameliorate oral skills and become able to eat orally, therefore weaning from EN becomes a therapeutic goal. No recommendations currently exist on tube weaning, and practices vary widely between centres. With this report, the French Network of Rare Digestive Diseases (FIMATHO) and the French-Speaking Group of Paediatric Hepatology, Gastroenterology and Nutrition (GFHGNP) aim to develop uniform clinical practice recommendations for weaning children from EN. A multidisciplinary working group (WG) encompassing paediatricians, paediatric gastroenterologists, speech-language therapists, psychologists, dietitians and occupational therapists, was formed in June 2018. A systematic literature search was performed on those published from January 1, 1998, to April 30, 2020, using MEDLINE. After several rounds of e-discussions, relevant items for paediatric tube weaning were identified, and recommendations were developed, discussed and finalized. The WG members voted on each recommendation using a nominal voting technique. Expert opinion was applied to support the recommendations where no high-quality studies were available.