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Background: Currently the health research system in Lao PDR is fragmented and largely donor led. Capacity among national public health institutes is limited to select priority research questions for funding., Objective: The objective of this capacity building and practice-oriented study is to describe the process and outcome of the first National Health Research Agenda for Lao PDR and how the agenda contributes to institutional capacity of the Ministry of Health, in order to contribute to evidence-informed public health policy making., Method: This activity used a mixed-methods approach. The overall design is based on principles of the interactive Learning and Action approach and consists out of 6 phases: (1) identification of needs, (2) shared analysis and integration, (3) nation-wide prioritization of research domains, (4) exploring specific research questions, (5) prioritization of research avenues, (6) dialogue and planning for action. The process involved interviews with experts in health policy and research (n = 42), telephone-based survey with district, provincial and national health staff (n = 135), a two-round Delphi consultation with experts in health policy and research (n = 33), and a workshop with policymakers, researchers, international organisations and civil society (n = 45) were held to gather data and conduct shared analysis., Results: 11 research domains were identified and prioritised: Health-seeking behaviour; Health system research; Health service provision; Mother and child health (MCH); Sexual & reproductive health; Health education; Non-communicable diseases (NCDs); Irrational drug use; Communicable diseases (CDs); Road traffic accidents; Mental health. Within these domains over 200 unique research questions were identified., Conclusion: Our approach led to a comprehensive, inclusive, public health agenda for Lao PDR to realise better informed health policies. Questions on the agenda are action-oriented, originating in a desire to understand the problem so that immediate improvements can be made. The agenda is used within the MoH as a tool to fund and approve research.

Background: Despite continued interest in the use of mobile health for improving maternal health outcomes, there have been limited attempts to identify relevant program theories., Objectives: This study had two aims: first, to explicate the assumptions of program designers, which we call the program theory and second, to contrast this program theory with empirical data to gain a better understanding of mechanisms, facilitators, and barriers related to the program outcomes., Methods: To achieve the aforementioned objectives, we conducted a retrospective qualitative study of a text messaging (short message service) platform geared at improving individual maternal health outcomes in Uganda. Through interviews with program designers (n=3), we elicited 3 main designers' assumptions and explored these against data from qualitative interviews with primary beneficiaries (n=26; 15 women and 11 men) and health service providers (n=6), as well as 6 focus group discussions with village health team members (n=50) who were all involved in the program., Results: Our study results highlighted that while the program designers' assumptions were appropriate, additional mechanisms and contextual factors, such as the importance of incentives for village health team members, mobile phone ownership, and health system factors should have been considered., Conclusions: Our results indicate that text messages could be an effective part of a more comprehensive maternal health program when context and system barriers are identified and addressed in the program theories., (©Onaedo Ilozumba, Marjolein Dieleman, Sara Van Belle, Moses Mukuru, Azucena Bardají, Jacqueline EW Broerse. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 10.05.2018.)

Background: Over the past six decades, the concept of patient-centred care (PCC) has been discussed in health research, policy and practice. However, research on PCC from a patients' perspective is sparse and particularly absent in outpatient psychiatric services., Aim: to gain insight into what patients with bipolar disorder and ADHD consider "good care" and what this implies for the conceptualisation of PCC., Method: A literature review on the different conceptualisations of PCC was complemented with qualitative explorative research on the experiences and needs of adults with ADHD and with bipolar disorder with mental healthcare in the Netherlands using focus group discussions and interviews., Results: The elements addressed in literature are clustered into four dimensions: "patient", "health professional", "patient-professional interaction" and "healthcare organisation". What is considered "good care" by patients coincided with the four dimensions of PCC found in literature and provided refinement of, and preferred emphasis within, the dimensions of PCC., Conclusions: This study shows the value of including patients' perspectives in the conceptualisation of PCC, adding elements, such as "professionals listen without judgment", "professionals (re)act on the fluctuating course of the disorder and changing needs of patients" and "patients are seen as persons with positive sides and strengths".

Social accountability in the health sector has been promoted as a strategy to improve the quality and performance of health providers in low- and middle-income countries. Whether improvements occur, however, depends on the willingness and ability of health providers to respond to societal pressure for better care. This article uses a realist approach to review cases of collective citizen action and advocacy with the aim to identify key mechanisms of provider responsiveness. Purposeful searches for cases were combined with a systematic search in four databases. To be included in the review, the initiatives needed to describe at least one outcome at the level of frontline service provision. Some 37 social accountability initiatives in 15 countries met these criteria. Using a realist approach, retroductive analysis and triangulation of methods and sources were performed to construct Context-Mechanism-Outcome configurations that explain potential pathways to provider responsiveness. The findings suggest that health provider receptivity to citizens' demands for better health care is mediated by health providers' perceptions of the legitimacy of citizen groups and by the extent to which citizen groups provide personal and professional support to health providers. Some citizen groups activated political or formal bureaucratic accountability channels but the effect on provider responsiveness of such strategies was more mixed. Favourable contexts for health provider responsiveness comprise socio-political contexts in which providers self-identify as activists, health system contexts in which health providers depend on citizens' expertise and capacities, and health system contexts where providers have the self-perceived ability to change the system in which they operate. Rather than providing recipes for successful social accountability initiatives, the synthesis proposes a programme theory that can support reflections on the theories of change underpinning social accountability initiatives and interventions to improve the quality of primary health care in different settings., (© The Author 2016. Published by Oxford University Press in association with The London School of Hygiene and Tropical Medicine.)

Background: The huge proportion of child marriage contributes to high rates of pregnancies among adolescent girls in Bangladesh. Despite substantial progress in reducing maternal mortality in the last two decades, the rate of adolescent pregnancy remains high. The use of skilled maternal health services is still low in Bangladesh. Several quantitative studies described the use of skilled maternal health services among adolescent girls. So far, very little qualitative evidence exists about attitudes and practices related to maternal health. To fill this gap, we aimed at exploring maternal health care-seeking behavior of adolescent girls and their experiences related to pregnancy and delivery in Bangladesh., Methods and Findings: A prospective qualitative study was conducted among thirty married adolescent girls from three Upazilas (sub-districts) of Rangpur district. They were interviewed in two subsequent phases (2014 and 2015). To triangulate and validate the data collected from these married adolescent girls, key informant interviews (KIIs) and focus group discussions (FGDs) were conducted with different stakeholders. Data analysis was guided by the Social-Ecological Model (SEM) including four levels of factors (individual, interpersonal and family, community and social, and organizational and health systems level) which influenced the maternal health care-seeking behavior of adolescent girls. While adolescent girls showed little decision making-autonomy, interpersonal and family level factors played an important role in their use of skilled maternal health services. In addition, community and social factors and as well as organizational and health systems factors shaped adolescent girls' maternal health care-seeking behavior., Conclusions: In order to improve the maternal health of adolescent girls, all four levels of factors of SEM should be taken into account while developing health interventions targeting adolescent girls., Competing Interests: The authors have declared that no competing interests exist.

Background: In South Sudan, women disproportionately bear the burden of morbidity and mortality related to sexual and reproductive health, with a maternal mortality ratio of 789 deaths per 100,000 live births., Design: A qualitative study was conducted to analyze how gendered social relations among the Fertit people affect women's ability to exercise control over their reproductive lives and thereby their sexual and reproductive health. Transcripts of 5 focus group discussions and 44 semi-structured interviews conducted with purposefully selected community members and health personnel were analyzed using Connell's relational theory of gender., Results: Women across all age groups report that they have little choice but to meet the childbearing demands of husbands and their families. Women, both young and old, and also elders, are frustrated about how men and society are letting them down and how they are left to bear the reproductive burden. The poverty and chronic insecurity in South Sudan mean that many men have few sources of pride and achievement; conformity and complicity with the hegemonic practices accord both security and a sense of belonging and privilege to men, often at the expense of women's reproductive health., Conclusions: Inequalities in the domestic, social, and economic spheres intersect to create social situations wherein Fertit women's agency in the reproductive realm is constrained. In South Sudan, as long as economic and social opportunities for women remain restricted, and as long as insecurity and uncertainty remain, many women will have little choice but to resort to having many children to safeguard their fragile present and future. Unless structural measures are taken to address these inequalities, there is a risk of both a widening of existing health inequalities and the emergence of new inequalities., Competing Interests: and funding The authors have not received any funding or benefits from industry to conduct this study. The authors declare that there is no conflict of interest.

Background: With a maternal mortality ratio of 789 per 100,000 live births, and a contraceptive prevalence rate of 4.7%, South Sudan has one of the worst reproductive health situations in the world. Understanding the social norms around sexuality and reproduction, across different ethnic groups, is key to developing and implementing locally appropriate public health responses., Methods: A qualitative study was conducted in the state of Western Bahr el Ghazal (WBeG) in South Sudan to explore the social norms shaping decisions about family planning among the Fertit community. Data were collected through five focus group discussions and 44 semi-structured interviews conducted with purposefully selected community members and health personnel., Results: Among the Fertit community, the social norm which expects people to have as many children as possible remains well established. It is, however, under competitive pressure from the existing norm which makes spacing of pregnancies socially desirable. Young Fertit women are increasingly, either covertly or overtly, making family planning decisions themselves; with resistance from some menfolk, but also support from others. The social norm of having as many children as possible is also under competitive pressure from the emerging norm that equates taking good care of one's children with providing them with a good education. The return of peace and stability in South Sudan, and people's aspirations for freedom and a better life, is creating opportunities for men and women to challenge and subvert existing social norms, including but not limited to those affecting reproductive health, for the better., Conclusions: The sexual and reproductive health programmes in WBeG should work with and leverage existing and emerging social norms on spacing in their health promotion activities. Campaigns should focus on promoting a family ideal in which children become the object of parental investment, rather than labour to till the land - instead of focusing directly or solely on reducing family size. The conditions are right in WBeG and in South Sudan for public health programmes to intervene to trigger social change on matters related to sexual and reproductive health; this window of opportunity should be leveraged to achieve sustainable change.

Background: Bangladesh has the highest rate of adolescent pregnancy in South Asia. Child marriage is one of the leading causes of pregnancies among adolescent girls. Although the country's contraceptive prevalence rate is quite satisfactory, only 52% of married adolescent girls use contraceptive methods. This qualitative study is aimed at exploring the factors that influence adolescent girls' decision-making process in relation to contraceptive methods use and childbearing., Methods and Results: We collected qualitative data from study participants living in Rangpur district, Bangladesh. We conducted 35 in-depth interviews with married adolescent girls, 4 key informant interviews, and one focus group discussion with community health workers. Adolescent girls showed very low decision-making autonomy towards contraceptive methods use and childbearing. Decisions were mainly made by either their husbands or mothers-in-law. When husbands were unemployed and financially dependent on their parents, then the mothers-in-law played most important role for contraceptive use and childbearing decisions. Lack of reproductive health knowledge, lack of negotiation and communication ability with husbands and family members, and mistrust towards contraceptive methods also appeared as influential factors against using contraception resulting in early childbearing among married adolescent girls., Conclusions: Husbands and mothers-in-law of newly married adolescent girls need to be actively involved in health interventions so that they make more informed decisions regarding contraceptive use to delay pregnancies until 20 years of age. Misunderstanding and distrust regarding contraceptives can be diminished by engaging the wider societal actors in health intervention including neighbours, and other family members.

Objective: The aim of this study was to gain better insight into the quality of patient participation in the development of clinical practice guidelines and to contribute to approaches for the monitoring and evaluation of such initiatives. In addition, we explore the potential of a dialogue-based approach for reconciliation of preferences of patients and professionals in the guideline development processes., Methods: The development of the Multidisciplinary Guideline for Employment and Severe Mental Illness in the Netherlands served as a case study. Methods for patient involvement in guideline development included the following: four patient representatives in the development group and advisory committee, two focus group discussions with patients, a dialogue session and eight case studies. To evaluate the quality of patient involvement, we developed a monitoring and evaluation framework including both process and outcome criteria. Data collection included observations, document analysis and semi-structured interviews (n = 26)., Results: The quality of patient involvement was enhanced using different methods, reflection of patient input in the guideline text, a supportive attitude among professionals and attention to patient involvement throughout the process. The quality was lower with respect to representing the diversity of the target group, articulation of the patient perspective in the GDG, and clarity and transparency concerning methods of involvement., Conclusions: The monitoring and evaluation framework was useful in providing detailed insights into patient involvement in guideline development. Patient involvement was evaluated as being of good quality. The dialogue-based approach appears to be a promising method for obtaining integrated stakeholder input in a multidisciplinary setting., (© 2015 John Wiley & Sons Ltd.)

Background: Attention deficit/hyperactivity disorder (ADHD) is a common psychiatric disorder in childhood which has recently been acknowledged to persist into adulthood in two-thirds of cases. However, the problems faced by adults with ADHD in their daily lives remain largely unexplored., Objective: To assess the perspectives, problems and needs of adults with ADHD., Design and Participants: In this exploratory qualitative study, adults (n = 52) with a primary ADHD or ADD diagnosis, aged 21 years or older, participated in eight focus groups in five cities in the Netherlands., Results: Although core symptoms of ADHD were perceived as a problem, participants placed greater emphasis on social problems that arise from living with ADHD and their subsequent effects on self-image. Accompanying problems were feelings of powerlessness, lack of acceptance by their social environment and poor self-image. Adults with ADHD would like to see greater acceptance of ADHD and its accompanying problems, together with appreciation for personal competences and strengths in certain domains, such as creative or associative thinking., Conclusion: Our study adds to previous research by providing insight into how these problems are interrelated and their strong link to the social environment. Perceived powerlessness, failure and negative reactions of the social environment lead to a persistent low self-image. This merits substantial attention in future research, particularly when considering on-going care options., (© 2015 John Wiley & Sons Ltd.)

Background: The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research agendas., Aim: To understand how the Dialogue Model can be optimised by focusing on programming and implementation, in order to stimulate the inclusion of (the perspectives of) patients in research., Methods: A responsive evaluation of the programming and implementation phases of nine agenda-setting projects that had used the Dialogue Model for agenda-setting was conducted. Fifty-four semi-structured interviews were held with different stakeholders (patients, researchers, funding agencies). Three focus groups with patients, funding agencies and researchers (16 participants) were organized to validate the findings., Results: Patient involvement in programming and implementation of the research agendas was limited. This was partly related to poor programming and implementation, partly to pitfalls in earlier phases of the agenda-setting. Optimization of the Dialogue Model is possible by attending to the nature of the agenda and its intended use in earlier phases. Attention should also be given to the ambassadors and intended users of agenda topics. Support is needed during programming and implementation to organize patient involvement and adapt organizational structures like review procedures. In all phases the attitude to patient involvement, stakeholder participation, especially of researchers, and formal and informal relationships between parties need to be addressed to build a strong relationship with a shared goal., Conclusion: Patient involvement in agenda-setting is not automatically followed by patient involvement in programming and implementation. More attention should be paid, in earlier stages, to the attitude and engagement of researchers and funding agencies., (© 2014 John Wiley & Sons Ltd.)

Community health workers (CHWs) are increasingly recognized as an integral component of the health workforce needed to achieve public health goals in low- and middle-income countries (LMICs). Many factors influence CHW performance. A systematic review was conducted to identify intervention design related factors influencing performance of CHWs. We systematically searched six databases for quantitative and qualitative studies that included CHWs working in promotional, preventive or curative primary health services in LMICs. One hundred and forty studies met the inclusion criteria, were quality assessed and double read to extract data relevant to the design of CHW programmes. A preliminary framework containing factors influencing CHW performance and characteristics of CHW performance (such as motivation and competencies) guided the literature search and review.A mix of financial and non-financial incentives, predictable for the CHWs, was found to be an effective strategy to enhance performance, especially of those CHWs with multiple tasks. Performance-based financial incentives sometimes resulted in neglect of unpaid tasks. Intervention designs which involved frequent supervision and continuous training led to better CHW performance in certain settings. Supervision and training were often mentioned as facilitating factors, but few studies tested which approach worked best or how these were best implemented. Embedment of CHWs in community and health systems was found to diminish workload and increase CHW credibility. Clearly defined CHW roles and introduction of clear processes for communication among different levels of the health system could strengthen CHW performance.When designing community-based health programmes, factors that increased CHW performance in comparable settings should be taken into account. Additional intervention research to develop a better evidence base for the most effective training and supervision mechanisms and qualitative research to inform policymakers in development of CHW interventions are needed., (Published by Oxford University Press in association with The London School of Hygiene and Tropical Medicine © The Author 2014.)

Context: Most initiatives for patient involvement in guideline development have been carried out for chronic diseases. The involvement of patients with incidental and non-threatening diseases is more complicated. Little knowledge is available on how these patient groups can successfully be involved in guideline development., Objective: To assess the effectiveness of the involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery., Design: At three different stages patients were involved in the process: (i) three focus group discussions (FGDs) were organized, (ii) patients were involved for the instruction video, and (iii) patients tested the patient version of the clinical guideline. To assess the effectiveness, an evaluation framework was used. The guideline development process was divided into two parallel trajectories in which patients and professionals were consulted separately. Patients were primarily consulted for the development of the patient version, although their input also influenced the recommendations for resumption of (work) activities after surgery. Professionals were mainly involved in the development of the recommendations of the clinical guideline., Discussion and Conclusions: The involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery was successful in many respects. Consultation of individual patients by means of FGDs and with regular feedback moments has been rather effective for a guideline development process related to an incidental, non-threatening disease for which there is no patient organization. Patients' input contributed to applicability of the clinical guideline in daily practice. Increased patient involvement could be achieved by integration of the two parallel trajectories with additional participatory activities, such as a dialogue meeting., (© 2013 John Wiley & Sons Ltd.)

Background: Health extension workers (HEWs) in Ethiopia have a unique position, connecting communities to the health sector. This intermediary position requires strong interpersonal relationships with actors in both the community and health sector, in order to enhance HEW performance. This study aimed to understand how relationships between HEWs, the community and health sector were shaped, in order to inform policy on optimizing HEW performance in providing maternal health services., Methods: We conducted a qualitative study in six districts in the Sidama zone, which included focus group discussions (FGDs) with HEWs, women and men from the community and semi-structured interviews with HEWs; key informants working in programme management, health service delivery and supervision of HEWs; mothers; and traditional birth attendants. Respondents were asked about facilitators and barriers regarding HEWs' relationships with the community and health sector. Interviews and FGDs were recorded, transcribed, translated, coded and thematically analysed., Results: HEWs were selected by their communities, which enhanced trust and engagement between them. Relationships were facilitated by programme design elements related to support, referral, supervision, training, monitoring and accountability. Trust, communication and dialogue and expectations influenced the strength of relationships. From the community side, the health development army supported HEWs in liaising with community members. From the health sector side, top-down supervision and inadequate training possibilities hampered relationships and demotivated HEWs. Health professionals, administrators, HEWs and communities occasionally met to monitor HEW and programme performance. Expectations from the community and health sector regarding HEWs' tasks sometimes differed, negatively affecting motivation and satisfaction of HEWs., Conclusion: HEWs' relationships with the community and health sector can be constrained as a result of inadequate support systems, lack of trust, communication and dialogue and differing expectations. Clearly defined roles at all levels and standardized support, monitoring and accountability, referral, supervision and training, which are executed regularly with clear communication lines, could improve dialogue and trust between HEWs and actors from the community and health sector. This is important to increase HEW performance and maximize the value of HEWs' unique position.

Background: The FIRST model describes five practical components that enable equal collaboration between patients and professionals in clinical rheumatology research: Facilitate, identify, respect, support and training., Objective: To assess the value of this model as a framework for setting up and guiding the structural involvement of people with arthritis in health research., Method: The FIRST model was used as a framework during the guidance of a network of patient research partners and clinical rheumatology departments in the Netherlands. A 'monitoring and evaluation' approach was used to study the network over a period of 2 years. Data were collected using mixed methods and subjected to a directed content analysis. The FIRST components structured the data analysis. During monitoring meetings, refined and additional descriptors for each component were formulated and added if new items were found., Results: The FIRST model helps to guide and foster structural partnerships between patients and professionals in health research projects. However, it should be broadened to emphasize the pivotal role of the principal investigator regarding the facilitation and support of patient research partners, to recognize the requirements of professionals for training and coaching and to capture the dynamics of collaboration, mutual learning processes and continuous reflection., Conclusion: FIRST is a good model to implement sustainable relationships between patients and researchers. It will benefit from further refinement by acknowledging the dynamics of collaboration and including the concept of reflection and relational empowerment. The reciprocal character of the five components, including training and support of researchers, should be incorporated., (© 2013 John Wiley & Sons Ltd.)

Background: Community health workers (CHWs) are increasingly recognized as an integral component of the health workforce needed to achieve public health goals in low- and middle-income countries (LMICs). Many factors intersect to influence CHW performance. A systematic review with a narrative analysis was conducted to identify contextual factors influencing performance of CHWs., Methods: We searched six databases for quantitative, qualitative, and mixed-methods studies that included CHWs working in promotional, preventive or curative primary health care services in LMICs. We differentiated CHW performance outcome measures at two levels: CHW level and end-user level. Ninety-four studies met the inclusion criteria and were double read to extract data relevant to the context of CHW programmes. Thematic coding was conducted and evidence on five main categories of contextual factors influencing CHW performance was synthesized., Results: Few studies had the influence of contextual factors on CHW performance as their primary research focus. Contextual factors related to community (most prominently), economy, environment, and health system policy and practice were found to influence CHW performance. Socio-cultural factors (including gender norms and values and disease related stigma), safety and security and education and knowledge level of the target group were community factors that influenced CHW performance. Existence of a CHW policy, human resource policy legislation related to CHWs and political commitment were found to be influencing factors within the health system policy context. Health system practice factors included health service functionality, human resources provisions, level of decision-making, costs of health services, and the governance and coordination structure. All contextual factors can interact to shape CHW performance and affect the performance of CHW interventions or programmes., Conclusions: Research on CHW programmes often does not capture or explicitly discuss the context in which CHW interventions take place. This synthesis situates and discusses the influence of context on CHW and programme performance. Future health policy and systems research should better address the complexity of contextual influences on programmes. This insight can help policy makers and programme managers to develop CHW interventions that adequately address and respond to context to optimise performance.

Background: Complications of abortion are one of the leading causes of maternal mortality worldwide, along with hemorrhage, sepsis, and hypertensive diseases of pregnancy. In Afghanistan little data exist on the capacity of the health system to provide post-abortion care (PAC). This paper presents findings from a national emergency obstetric and neonatal care needs assessment related to PAC, with the aim of providing insight into the current situation and recommendations for improvement of PAC services., Methods: A national Emergency Obstetric and Neonatal Care Needs Assessment was conducted from December 2009 through February 2010 at 78 of the 127 facilities designated to provide emergency obstetric and neonatal care services in Afghanistan. Research tools were adapted from the Averting Maternal Death and Disability Program Needs Assessment Toolkit and national midwifery education assessment tools. Descriptive statistics were used to summarize facility characteristics, and linear regression models were used to assess the factors associated with providers' PAC knowledge and skills., Results: The average number of women receiving PAC in the past year in each facility was 244, with no significant difference across facility types. All facilities had at least one staff member who provided PAC services. Overall, 70% of providers reported having been trained in PAC and 68% felt confident in their ability to perform these services. On average, providers were able to identify 66% of the most common complications of unsafe or incomplete abortion and 57% of the steps to take in examining and managing women with these complications. Providers correctly demonstrated an average of 31% of the tasks required for PAC during a simulated procedure. Training was significantly associated with PAC knowledge and skills in multivariate regression models, but other provider and facility characteristics were not., Conclusions: While designated emergency obstetric facilities in Afghanistan generally have most supplies and equipment for PAC, the capacity of healthcare providers to deliver PAC is limited. Therefore, we strongly recommend training all skilled birth attendants in PAC services. In addition, a PAC training package should be integrated into pre-service medical education.

This study is the first in-depth qualitative study of service user involvement in the development of multidisciplinary mental health guidelines in the Netherlands. The study comprised a desk study of guidelines (n = 12) and case studies of service user involvement in five guidelines using document analysis, interviews (n = 24) and observations. The desk study shows that all multidisciplinary mental health guidelines have taken service user perspectives into account to some extent. The five guideline case studies led to the identification of ten main themes. Findings will assist guideline developers in making early, informed decisions on involving service users effectively.

Genetics in health care is shifting, and responsibilities of genetic and nongenetic specialists are changing, requiring new guidance on how to adapt health care to advances in genetic services. This paper explores facilitators and barriers in the process of implementation of innovations in genetic health care. Furthermore, lessons learnt for optimizing development of new genetic services are summarized. Barriers and facilitators in transition processes were identified using mixed methods, including an online open-ended questionnaire among professionals and an international expert meeting. A multi-case study approach was used to explore recent experiences with innovations in genetic services in different phases of implementation. Barriers encountered in transitions in genetic service provision include the following: lack of genetic knowledge and skills among nongenetic health care providers, resistance to new divisions of responsibilities, and a need for more close collaboration and communication between geneticists and nongeneticists. Facilitating factors include the following: statutory registration of genetic specialists, availability of essential staff and equipment, and existence of registries and guidelines. Other challenges are experienced in the establishment of the appropriate legal and financial structures. A set of points to consider for genetic innovation processes is proposed, addressing, e.g., transition management and cooperation and communication strategies.

Background: Accountability has center stage in the current post-Millennium Development Goals (MDG) debate. One of the effective strategies for building equitable health systems and providing quality health services is the strengthening of citizen-driven or social accountability processes. The monitoring of actions and decisions of policymakers and providers by citizens is regarded as a right in itself but also as an alternative to weak administrative accountability mechanisms, in particular in settings with poor governance. The effects of social accountability interventions are often based on assumptions and are difficult to evaluate because of their complex nature and context sensitivity. This study aims to review and assess the available evidence for the effect of social accountability interventions on policymakers' and providers' responsiveness in countries with medium to low levels of governance capacity and quality. For policymakers and practitioners engaged in health system strengthening, social accountability initiatives and rights-based approaches to health, the findings of this review may help when reflecting on the assumptions and theories of change behind their policies and interventions., Methods/design: Little is known about social accountability interventions, their outcomes and the circumstances under which they produce outcomes for particular groups or issues. In this study, social accountability interventions are conceptualized as complex social interventions for which a realist synthesis is considered the most appropriate method of systematic review. The synthesis is based on a preliminary program theory of social accountability that will be tested through an iterative process of primary study searches, data extraction, analysis and synthesis. Published and non-published (grey) quantitative and qualitative studies in English, French and Spanish will be included. Quality and validity will be enhanced by continuous peer review and team reflection among the reviewers., Discussion: The authors believe the advantages of a realist synthesis for social accountability lie in the possibility of overcoming disciplinary or paradigmatic boundaries often found in public health and development. In addition, they argue that this approach fills the knowledge gap left by conventional synthesis or evaluation exercises of participatory programs. Finally, the authors describe the practical strategies adopted to address methodological challenges and validity.

The emerging field of synthetic biology has the potential to improve global health. For example, synthetic biology could contribute to efforts at vaccine development in a context in which vaccines and immunization have been identified by the international community as being crucial to international development efforts and, in particular, the millennium development goals. However, past experience with innovations shows that realizing a technology's potential can be difficult and complex. To achieve better societal embedding of synthetic biology and to make sure it reaches its potential, science and technology development should be made more inclusive and interactive. Responsible research and innovation is based on the premise that a broad range of stakeholders with different views, needs and ideas should have a voice in the technological development and deployment process. The interactive learning and action (ILA) approach has been developed as a methodology to bring societal stakeholders into a science and technology development process. This paper proposes an ILA in five phases for an international effort, with national case studies, to develop socially robust applications of synthetic biology for global health, based on the example of vaccine development. The design is based on results of a recently initiated ILA project on synthetic biology; results from other interactive initiatives described in the literature; and examples of possible applications of synthetic biology for global health that are currently being developed.

Objective: The crisis card is a specific form of psychiatric advance directive, documenting mental clients' treatment preferences in advance of a potential psychiatric crisis. In this paper, we aim to provide insight into implementation issues surrounding the crisis card., Method: A Dutch crisis-card project formed the scope of this study. Data were collected through interviews with 15 participants from six stakeholder groups., Results: Identified implementation issues are: (a) The role of the crisis-card counselor, (b) lack of distribution and familiarity, (c) care professionals' routines, and (d) client readiness., Conclusions and Implications for Practice: The crisis-card counselor appears to play a key role in fostering benefits of the crisis card by supporting clients' perspectives. More structural integration of the crisis card in care processes may enhance its impact, but should be carefully explored., ((PsycINFO Database Record (c) 2013 APA, all rights reserved).)

Objective: Recent trends in health care indicate a shift toward client-centered care and an emphasis on dialog between clients and providers. The aim of this study is to assess the role of video-mediated moral deliberation in stimulating dialog between clients and providers., Methods: A participatory video project carried out in a long-term care facility of a psychiatric hospital was investigated as a case study. Data were collected through interviews, a focus group and a dialog session with providers, clients, managers and a family member., Results: Data analysis produced four themes: (1) the video elicits discussion by affecting viewers; (2) the video raises awareness and discussion of clients' needs and desires; (3) the video and discussion give a voice to clients; and (4) the video and discussions draw attention to client-provider relations., Conclusion: The study shows that video-mediated moral deliberation can be a useful tool for starting dialog between clients and care providers. It can also contribute to changes in care provision by acting as a catalyst., Practice Implications: This study provides an example of how video-mediated moral deliberation can be applied in the context of psychiatric care. Opportunities regarding the usefulness of video-mediated moral deliberation include training purposes and education., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Background: Full recovery after gynecological surgery takes much longer than expected regardless of surgical technique or the level of invasiveness. After discharge, detailed convalescence recommendations are not provided to patients typically, and postoperative care is fragmented, poorly coordinated, and given only on demand. For patients, this contributes to irrational beliefs and avoidance of resumption of activities and can result in a prolonged sick leave., Objective: To develop an eHealth intervention that empowers gynecological patients during the perioperative period to obtain timely return to work (RTW) and prevent work disability., Methods: The intervention mapping (IM) protocol was used to develop the eHealth intervention. A literature search about behavioral and environmental conditions of prolonged sick leave and delayed RTW in patients was performed. Patients' needs, attitudes, and beliefs regarding postoperative recovery and resumption of work were identified through focus group discussions. Additionally, a literature search was performed to obtain determinants, methods, and strategies for the development of a suitable interactive eHealth intervention to empower patients to return to normal activities after gynecological surgery, including work. Finally, the eHealth intervention was evaluated by focus group participants, medical doctors, and eHealth specialists through questionnaires., Results: Twenty-one patients participated in the focus group discussions. Sufficient, uniform, and tailored information regarding surgical procedures, complications, and resumption of activities and work were considered most essential. Knowing who to contact in case of mental or physical complaints, and counseling and tools for work reintegration were also considered important. Finally, opportunities to exchange experiences with other patients were a major issue. Considering the determinants of the Attitude-Social influence-self-Efficacy (ASE) model, various strategies based on a combination of theory and evidence were used, resulting in an eHealth intervention with different interactive functionalities including tailored convalescence recommendations and a video to communicate the most common pitfalls during the perioperative period to patients and employers. Fifteen patients in the focus groups, 11 physicians, and 3 eHealth specialists suggested points for improvement to optimize the usability of the eHealth intervention and judged it an approachable, appropriate, and attractive eHealth intervention to empower gynecological patients., Conclusions: The IM protocol was a useful method to develop an eHealth intervention based on both theory and evidence. All patients and stakeholders judged the eHealth intervention to be a promising tool to empower gynecological patients during the perioperative period and to help them to return to normal activities and work.

Patient involvement in scientific advisory processes could lead to more societally relevant advice. This article describes a case study wherein the Health Council of the Netherlands involved patient groups in an advisory process with a predefined focus: setting a research agenda for medical products development. A four-phase approach was developed to stimulate needs-articulation concerning future medical products for a broad range of patient groups covering 15 disease domains. 119 (expert) patients and 92 non-patient representatives were consulted using interviews and focus groups. In a facilitated way, patients appeared capable and willing to provide input useful for an advisory process. A broad range of medical products was defined serving different purposes. This study showed two dilemmas: first, finding a balance between a predefined focus and being sufficiently broad to enable patients and patient representatives to contribute, and second, finding a balance between relevance for many patients groups and saturation of data for a lower number of patient groups. By taking the context of patients' daily life as starting point patient groups provided new insights. The predefined focus was sometimes perceived as constraining. The GR considered the articulated needs constructive and incorporated patients' input in their advice to the Minister of Health., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

This explorative study assesses perceptions of mental health and help-seeking behavior among adults in Vietnam. Methods included questionnaires (200) and focus group discussions (eight). Respondents were often unable to name specific mental illnesses. Frequently mentioned symptoms of mental illness were talking nonsense, talking/laughing alone and wandering. Pressure/stress and studying/thinking too much were often identified causes. Most respondents showed a preference for medical treatment options, often in combination with family care. The results show that perceptions of mental health and help-seeking behaviour are influenced by a lack of knowledge and a mix of traditional and modern views.

OBJECTIVE To gain more insight into exclusion mechanisms and inclusion strategies in patient-expert partnerships. BACKGROUND Patient participation in health research, on the level of 'partnerships with experts' is a growing phenomenon. However, little research is conducted whether exclusion mechanisms take place and to what extent patients' perspectives are included in the final outcomes of these partnerships. Case study  A dialogue meeting attended by experts, patients and patient representatives to develop a joint research agenda. Different inclusion strategies were applied during the dialogue meeting to avoid possible exclusion. METHOD Data were collected by the means of audio and video recordings, observations, document analysis and evaluative interviews. The data are clustered using a framework that divides exclusion mechanisms in three categories: circumstances, behaviour and verbal communication. The data are analysed focusing on the experiences of participants, observation of occurrence of exclusion and difference between input and outcome of the dialogue meeting. RESULTS The circumstances of the dialogue and the behaviour of the participants were experienced as mainly inclusive. Some exclusion was observed particularly with respect to verbal communication. The input of the patients was less visible in the outcome of the dialogue meeting compared to the input of the experts. CONCLUSION This case study reveals that exclusion of patients' perspective occurred during a dialogue meeting with experts, despite the fact that inclusion strategies were used and patients experienced the dialogue meeting as inclusive. To realize a more effective patient-expert partnership, more attention should be paid to the application of some additional inclusion strategies., (© 2010 Blackwell Publishing Ltd.)

Background: Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue., Methods: We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, asthma/chronic obstructive pulmonary disease, burns, diabetes and intellectual disabilities., Results: The Dialogue Model is grounded in participatory and interactive approaches and has been adjusted on the basis of pilot work. It has six phases: exploration; consultation; prioritization; integration; programming; and implementation. These phases are discussed and illustrated with a case description of research agenda setting relating to burns., Conclusions: The dialogue model appeared relevant and feasible to structure the process of collaboration between stakeholders in several research agenda setting processes. The phase of consultation enables patients to develop their own voice and agenda, and prepares them for the broader collaboration with other stakeholder groups. Challenges include the stimulation of more permanent changes in research, and institutional transitions.

Background and Aim: The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research priorities of burn survivors and professionals and investigate to what extent it is possible to come to a joint research agenda., Methodology: The project followed the Dialogue Model for research agenda setting. Initially burn survivors and professionals were consulted separately and group-specific lists of research priorities were established, using a literature survey, exploratory interviews (n=10), focus groups (n=58), a questionnaire (n=224) and Delphi rounds (n=12). Subsequently, in a dialogue meeting burn survivors and professionals presented and discussed their priorities, developed one integrated list, and prioritized the 15 most important topics on this list., Results: Considerable overlap was observed between the research priorities of burn survivors and professionals, particularly with respect to biomedical and clinical research on wound healing and scar management. However, differences were also observed, e.g. treatment of itching and oedema on scars and donor places., Conclusion: The model proved useful in eliciting research priorities from both professionals and burn survivors, and in stimulating a meaningful dialogue between these groups. The involvement of burn survivors identified burn research areas that are currently not the focus of research in The Netherlands., (Copyright (c) 2009 Elsevier Ltd and ISBI. All rights reserved.)

The Farmer Life School (FLS) is an innovative approach to integrating HIV education into life skills and technical training for farmers. This study aims to gain insight into the strengths and weaknesses of this relatively new approach, through the implementation of an adapted version in South Africa. The results are presented of a pilot with three groups of community gardeners, predominantly women, attending weekly sessions. Impact was assessed in terms of three key elements: participation, learning, and empowerment. Data were collected through extensive session reports, follow-up interviews, and reflection exercises with facilitators and participating groups and individuals. The results suggest that a group-based discovery learning approach such as the FLS has great potential to improve food security and wellbeing, while allowing participants to explore issues around HIV/AIDS. However, the analysis also shows that HIV/AIDS-related illness and death, and the factors that drive the epidemic and its impact, undermine farmers' ability to participate, the safety and trust required for learning, and the empowerment process. Participatory approaches such as the FLS require a thorough understanding of and adaptation to the context.

In early 2002, the Dutch Ministry of Public Health, Welfare and Sport piloted the application of an interactive process to policy development in the field of medical biotechnology. In such an approach, relevant societal actors, including the public at large, are actively involved in an open exchange, planning, action and reflection process. This paper reports on the findings of one of the activities of the ministry within this initiative, the consultation of the public on dilemmas with respect to prenatal genetic testing by means of citizen panels. Participants were asked to reflect on questions with respect to whether and under which conditions pregnant women may have freedom of choice to use prenatal genetic testing. In a structured way, arguments in favour and against various positions were identified and prioritized. The paper closes with a discussion on the implications of the use of citizen panels and summarizes the 2 actual policy changes of the ministry that resulted from this process., ((c) 2008 S. Karger AG, Basel)

Background: Although patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision-making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long-term targets., Aims: By conducting transparent and structured consultations with asthma and chronic obstructive pulmonary disease (COPD) patients regarding their health research priorities, we aim to assess the ability of patients to prioritize research in a well-argued way., Methods: Patients were consulted through seven focus groups, a feedback meeting, and a questionnaire. The focus groups and the feedback meeting aimed to explore the entire breadth of patients' problems experienced in relation to their diseases, while the questionnaire aimed to investigate patients' prioritization of possible research targets focused on solving these problems., Results: The focus groups produced a wide range of problems, including those related to health-care organization, social environment, therapy and costs. In terms of research prioritization, patients focused primarily on biomedical issues, particularly aetiology, co-morbidity and effective medication., Conclusions: The consultation procedure successfully elicited patients' research priorities including the underlying arguments. Our results indicate that asthma and COPD patients are capable of research prioritization in a well-argued way and that they highly value biomedical research. Furthermore, as they prioritized some research topics that are not covered by current Dutch research programmes, we argue that patient participation can broaden research agenda setting.

Both governments and patients' movements are increasingly making a plea in favour of the active participation of patients in biomedical research processes. One of the arguments concerns the contribution that patients could make to the relevance and quality of biomedical research based on their 'experiential knowledge'. This article reflects on the validity of patients' experiential knowledge in the context of biomedical research processes. Since a conclusive argument on the validity of patients' experiential knowledge could not be reached on the basis of theoretical reflection alone, a pragmatic approach was chosen that assessed the validity of patients' experiential knowledge in terms of its practical usefulness for biomedical research. Examples of patient participation in biomedical research were sought through literature research and more than 60 interviews with (bio)medical scientists, patients, representatives from patients' organisations, and health professionals in the Netherlands and the United Kingdom. These examples were analysed for a concrete contribution by patients to the research process. Twenty-one cases of patient participation in biomedical research were identified. After further analysis, concrete use of patients' experiential knowledge could be traced for nine of these cases. These findings suggest that patients' experiential knowledge, when translated into explicit demands, ideas, or judgements, can contribute to the relevance and quality of biomedical research. However, its deliberate use would require a more structural and interactive approach to patient participation. Since the implementation of such an approach could face various obstacles in current biomedical research practices, further research will be needed to investigate its feasibility.