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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

The 270th ENMC workshop aimed to develop a common procedure to optimize the reliability of SMN2 gene copy number determination and to reinforce collaborative networks between molecular scientists and clinicians. The workshop involved neuromuscular and clinical experts and representatives of patient advocacy groups and industry. SMN2 copy number is currently one of the main determinants for therapeutic decision in SMA patients: participants discussed the issues that laboratories may encounter in this molecular test and the cruciality of the accurate determination, due the implications as prognostic factor in symptomatic patients and in individuals identified through newborn screening programmes. At the end of the workshop, the attendees defined a set of recommendations divided into four topics: SMA molecular prognosis assessment, newborn screening for SMA, SMN2 copies and treatments, and modifiers and biomarkers. Moreover, the group draw up a series of recommendations for the companies manufacturing laboratory kits, that will help to minimize the risk of errors, regardless of the laboratories' expertise. [ABSTRACT FROM AUTHOR]

In 2023, the genetics scientific community celebrated two special anniversaries: the discovery of the double helix structure of DNA was published in 1953 and in 2003 the Human Genome Project was declared completed and made publicly available. To this day, genetics and genomics research is continuing to evolve at high pace and is identifying a steadily increasing number of genes as causal for distinct genetic diseases. The success story of genetics and genomics would not be complete without taking due account of the role of patient advocacy organizations in this process. This paper is based on the personal narrative (oral history) of a father whose daughter was born with a rare genetic disease (RGD) in the 1960s. The first-hand experience of living as a family with an RGD in those days made him a leading pioneer not only in the foundation of patient organizations at national, pan-European, and international levels but also in the development of multi-stakeholder co-operation and networking. Today, patient advocacy organizations play an active role in shaping health and research policies at national, EU, and international levels to ensure that their needs in regard to advancing RGD diagnostics, care, and treatment are addressed.

Background: Financial conflicts of interest (FCOI) of medical professionals and associated organizations with pharmaceutical companies (pharma) might contribute to the use of low value oncological treatments. Value criteria for oncological drug approvals in the Netherlands have recently become more stringent leading to objections by cancer patient advocacy organizations (cPAOs). Considering the importance of cPAOs input in cancer patient care we analyzed whether pharma funding of cPAOs occurs in the Netherlands., Methods: The cPAO websites and available annual reports were evaluated for disclosure of pharma funding for the years 2021 and 2022. Also, data from the Dutch Healthcare Transparency Registry (DHTR) were extracted., Results: Twenty-one of 34 (61.8 %) cPAOs received pharma funding (with 20 registered in the DHTR), and for 13 (29.4 %) cPAOs no reporting of pharma funding could be found. Three of the cPAOs disclosed pharma funding directly on their main website. Online educational material was available from 22 cPAOs on their websites with pharma funding disclosed on the educational material in 5. The total registered amount of pharmaceutical funding was €667,232.00 in 2021 and €536,098.00 in 2022. The median (and interquartile ranges) DHTR registered amount of support per cPAO that received funding in the studied period was €23,799.50 (14,823.75-84,663.30). The most common funding category as defined in the DHTR was project sponsorship., Conclusions: Financial support by the pharmaceutical industry is common for Dutch cPAOs. Given the importance of cPAOs and their objective input in the societal debate on the availability of cancer drugs, the potential influence of pharma sponsoring should be critically evaluated., Competing Interests: Declaration of Competing Interest none, (Copyright © 2024. Published by Elsevier Ltd.)

Students' perceptions of nursing influence recruitment and retention in nursing education. Nursing education in the Netherlands differentiates two levels: Bachelor's (HBO-V) and intermediate vocational (MBO-V) level training, with MBO-V students accounting the majority. To avoid the expected nursing shortages, these students' perceptions of nursing need to be explored. We aimed to examine the orientation and attitudes of MBO-V students towards their future profession and their relation to demographic characteristics. A descriptive survey with a pretest-posttest design was conducted. Newly enrolled MBO-V students completed a questionnaire at the beginning and after five months of education, consisting of the Nursing Orientation Tool, the Nursing Attitude Questionnaire and demographic characteristics. The Wilcoxon signed-rank test, Mann-Whitney U test and regression analysis were used for data analyses. At the first time point, students agreed most with statements related to caring, nursing expertise, advocacy, empathy, and knowledge. After five months, students were more life-oriented, while caring, nursing expertise, advocacy, and empathy decreased. Selecting nursing as a first-choice programme and aiming for a nursing career influenced students' orientation and attitudes towards nursing positively. Being aware of students' orientation and attitudes towards nursing can help nursing educators in recruitment and retention strategies. • MBO-V students start their training with positive perceptions towards nursing. • Orientation and attitudes change during the first five months of training. • A preference for a nursing career is related to positive professional perceptions. • Awareness of perceptions can help educators in recruitment and retention strategies. [ABSTRACT FROM AUTHOR]

Objective:To explore the perspective of Turkish-Dutch general practitioner (GP) patients on informal interpreting from an integrated theory base, focusing on interpreters’ roles, trust and power. Design:Semi-structured in depth interviews were conducted with 21 first-generation Turkish-Dutch migrant patients who made use of informal interpreters to communicate with their GPs. An interview guide was designed based on the theoretical framework of interpreter’s roles, trust and power, covering questions about interpreters’ role, trust in informal/professional interpreters and power division in the medical consultation. The interviews were transcribed verbatim and analyzed according to the constant comparative method. Results:Besides providing linguistic translation, informal interpreters were expected to perform the roles of advocates and caregivers of the patients. Informal interpreters were trusted more than professional interpreters, mainly for fidelity reasons, that is, because the patients assumed that informal interpreters would act in their best interests. Although informal interpreters were often perceived as the primary interlocutor, the patients did not feel dominated by them, but rather empowered by their presence. Conclusion:Our findings indicate a connection between the role of the advocate, the fidelity dimension of trust and the perceived empowerment of the patients. By linking interpreters’ role to trust and power, this study contributes to theory building in the field of informal interpreting, which is needed to design evidence-based interventions to improve health care delivery to patients with insufficient language ability and thus to advance health care delivery to migrant patients, which is currently lagging behind. [ABSTRACT FROM PUBLISHER]

Background: A complaint from a patient can have a serious impact on the well-being of dentists. Little is known, however, about the nature and the extent of this impact. Methods: Therefore in 2013 an anonymous survey was conducted among 955 dentists and dental specialists who were involved in a complaints procedure dealt with by the Complaints Committee of the Royal Dutch Dental Association (KNMT) in the period of mid-2008 to mid-2013. Results: In total 413 (43 %) of these dentists participated in the study. As a result of a formal complaint 71 % of the respondents experienced a considerable impact in their professional practising, while 52 % stated that it had (also) seriously influenced their attitude towards colleagues and patients. Furthermore, 60 % (also) mentioned effects of a complaints procedure regarding their mental and/or physical well-being. Conclusions: Being confronted with a formal complaint from a patient leads to a considerable impact on dentists' professional practice and personal well-being. It is remarkable this did not only pertain to a 'negative' impact, but also to a 'positive' impact. Despite unpleasant feelings, several dentists regarded the complaint as a 'wake-up call'. Furthermore, given the relatively high number of successful mediation attempts it can be concluded that this form of complaint handling appears to be a successful way of solving problems that have arisen between patients and dentists. [ABSTRACT FROM AUTHOR]

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants' personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. [ABSTRACT FROM AUTHOR]

This article presents the results of participatory research into the roles and practices of autistic self-advocates in the Netherlands, and the outcomes of their activities. The article discusses the history of Dutch autism self-advocacy, situating it within the history and practices of self-advocacy internationally and the socio-cultural context of the Netherlands. Particular reference is made to Judi Chamberlin’s model for building effective self-advocacy organisations. Key findings include the scope of significant achievements, and the identification of barriers to efficacy in the areas of governance, personal and organisational capacity, relationships with other organisations, and coalition-building. The research concludes by considering what practices could serve to build increased capacity and efficacy, based on the experiences of these and other self-advocates. [ABSTRACT FROM PUBLISHER]

Background/Aim Study Question: Endometriosis is associated with a significant reduction in the quality of life and higher depression and anxiety rates. The Dutch Endometriosis Society (ES) was founded to increase the recognition and knowledge in patients and health care professionals, stimulate research and improve care. This study was conducted to explore the characteristics of the members and evaluate their needs and expectations. Methods: A descriptive questionnaire-based survey was conducted among all members of the ES. The response rate was 51% (n = 571). Results: ES members appear to be highly educated women with a wide variety of endometriosis-related symptoms resulting in considerable restrictions in daily life. Information transmission was considered the main aim of ES (97%), whereas 56% expected social support, and 38% expected advocacy. The majority (71%) reported an improvement in their quality of life after contact with the ES. Conclusion: The results of this study underline patients' primary quest for information about endometriosis. Patient support groups such as ES can fulfil a useful role in disseminating knowledge from medical professionals to those suffering a chronic illness, resulting in a greater understanding and ultimately increasing their quality of life. © 2015 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Objective We aimed to investigate which factors make a mentor mother support programme for abused women successful. Method We used semi-structured interviews with abused women and focus group discussions with the mentor mothers to evaluate their experiences and needs within a mentor support programme (MeMo SA). Fourteen abused women were interviewed 6 months after the support programme ended. Mentor mothers participated in two focus group discussions. Results Abused women emphasised that nonjudgmental listening, equivalence, involvement and bonding are important factors for successful support. Mentor mothers described that empathy, availability, persistence and advocacy fitted the needs of women best to empower them and help them to cope with their violent situation at home. A safe place to meet each other was also an important factor. Conclusion A good relationship, tailored support provided by home visiting, advocacy and safety are required to effectively help abused women. MeMo SA, a home-visiting support programme, is a promising valuable new support programme in primary care for abused women. [ABSTRACT FROM AUTHOR]

Background: Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses’ perceptions of proactive palliative care. Objectives: This study aimed to explore nurses’ perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. Methods: This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. Results: All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients’ wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. Conclusions: Nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance. [ABSTRACT FROM AUTHOR]

The article describes and examines complaints against family physicians submitted to the disciplinary tribunals in the Netherlands with a view to improving patient safety. The authors emphasize that the disciplinary system in the Netherlands is different from the malpractice system in the U.S. wherein patients can file complaints against family physicians without resorting to lawsuits or insurance claims. They state that the disciplinary system is useful in improving patient safety.

Background: Maintaining dignity, the quality of being worthy of esteem or respect, is considered as a goal of palliative care. The aim of this study was to analyse the construct of personal dignity and to assess the content validity of the Patient Dignity Inventory (PDI) in people with an advance directive in the Netherlands.Methods: Data were collected within the framework of an advance directives cohort study. This cohort study is aiming to get a better insight into how decisions are made at the end of life with regard to advance directives in the Netherlands. One half of the cohort (n = 2404) received an open-ended question concerning factors relevant to dignity. Content labels were assigned to issues mentioned in the responses to the open-ended question. The other half of the cohort (n = 2537) received a written questionnaire including the PDI. The relevance and comprehensiveness of the PDI items were assessed with the COSMIN checklist ('COnsensus-based Standards for the selection of health status Measurement INstruments').Results: The majority of the PDI items were found to be relevant for the construct to be measured, the study population, and the purpose of the study but the items were not completely comprehensive. The responses to the open-ended question indicated that communication and care-related aspects were also important for dignity.Conclusions: This study demonstrated that the PDI items were relevant for people with an advance directive in the Netherlands. The comprehensiveness of the items can be improved by including items concerning communication and care. [ABSTRACT FROM AUTHOR]

The purpose of this study is to describe and compare the systems for handling patient complaints in the Netherlands and Sweden. The study is based on document analysis and interviews with executive managers and employees in the patient complaint systems in the Netherlands and Sweden. In comparison to Sweden, the Netherlands has a decentralised complaint system with functions closer to the patients. In spite of this, the demand on the Swedish complaint system is higher. The two countries differ in patients' rights legislation in that the Netherlands has a separate legislation for patients' rights, which is not the case in Sweden. In both countries it appears that not only legislation is needed to strengthen the patients position. Actions that improve the independent position of some provisions within the complaint systems as well as actions that will facilitate the possibilities to make use of all functions in the patient complaint systems also seem to be important. [ABSTRACT FROM AUTHOR]

The author reflects on a study which focuses on the disciplinary tribunals in the Netherlands which can be a useful source of information to improve patient safety. He argues that the description of the authors on the disciplinary tribunals in the Netherlands shares a number of attributes with medical councils in the state medical boards in the U.S. He stresses that the Dutch health care and legal system are too different, and the disciplinary tribunals are too limited.

Women want positive birth experiences with high quality maternity care that is neither too much, too soon, nor too little, too late. Research confirms the effectiveness of midwifery care, and the midwifery approach to birth as physiologic may counter the upward trend of the unnecessary medicalization of birth. The role of guardian of physiologic birth is seen as central to midwifery practice; however, medical hegemony has led to the subordination of midwives, which inhibits them in fulfilling the role as guardian of physiologic birth. Learning to become powerful advocates of physiologic birth creates midwives able to speak up for effective, evidence-based maternity care and challenge the unnecessary use of obstetric intervention. Midwifery education has a role to fulfil in molding midwives who are able to assume this role. This brief report describes the development of an educational prototype aimed at increasing student midwife agency as an advocate of physiologic birth. This was done using rapid prototyping (RP) methodology, in which important stakeholders gave input and feedback during the educational design and development process. Input from stakeholders led to the inclusion of persuasive communication strategies and discussion and debate as teaching methodologies in order to increase student midwife agency to argue for physiologic birth. Reflective evidence-based practice, using the Optimality Index-Netherlands, allowed students to reflect on their practice while providing a framework for discussion. Working with the RP methodology allowed for the development of a prototype that reflected the needs of midwifery stakeholders and was mindful of material and human resources., (© 2019 by the American College of Nurse-Midwives.)

The article presents the law and practice of assisted dying in several countries in Europe and the Americas. The countries include the Netherlands, which allowed voluntary euthanasia since 2002 provided the doctors have met the statutory due care criteria, Luxembourg, which legalised euthanasia and assisted suicide in 2009 for mentally competent adults with an incurable medical condition only, and the state of Oregon in the U.S. which has a law permitting physician assisted dying since 1997.

Presents an interview with Raoul Fransen, co-founder of Young Positives, an international advocacy network of young people living with HIV/AIDS. His role as a policy officer at the Dutch AIDS Fund, dedicated to improving the Dutch response to HIV/AIDS; The greatest achievement of his career; Thoughts on the most neglected field of science or medicine; His greatest regret; Fransen's first experiment as a child.

This article deals with the questions what the benefits and limitations are of the instruments and strategies that patient organisations use to influence quality of care. The advocacy of patients' interests has become more important for patient organisations in recent years, which is partly due to Dutch health care policy reform. Thirty state funded quality improvement projects run by patient organisations between 2009 and 2012 have been analysed. The quality improvement instruments developed and used in these projects are concerned with: standardization and standard setting (What is good care?); consultation, comparison and checking (What is the state of the care given?); and negotiating and advising (How can quality of care be improved?). The choice for these instruments is partly based on patient organisations' strategies of scientization, valuing institutionalized methods and valuing good relationships. We see that the development and use of these quality improvement instruments do strengthen patient organisation and therefore have internal identity and organisational effects. However, the external effects patient organisations can have by using these instruments and strategies is limited or at least insecure by lack of economic capital after the development phase and lack of negotiating power. The external effects of these instruments and strategies depend largely on a patient organisation's network and the willingness, degree of openness and policy of other stakeholders to cooperate. Therefore, these forms of patient participation remain vulnerable., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Background: Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses' perceptions of proactive palliative care., Objectives: This study aimed to explore nurses' perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs., Methods: This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups., Results: All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients' wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals., Conclusions: Nurses' involvement in proactive palliative care is important in supporting patients' palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance.

Aim of the Study: To assess differences in patient satisfaction between a complaints procedure designed towards the needs of complainants (referred to here as the 'Committee') and a procedure that primarily aims at improving the professional quality of health care (referred to here as the 'Board')., Method: Patients' experiences and satisfaction were assessed through a questionnaire completed by 80 patients complaining to a Board and 335 to a complaints Committee. Only complainants with a complaint that was judged to be founded or partially founded were included., Results: Only half of the complainants reported being satisfied with the procedure they underwent. After controlling for differences in respondent characteristics, satisfaction with the Board was higher than with the Committee. The level of variance explained, however, was low (3%). The majority of respondents reported favourably on procedural aspects, for example, the impartiality of the procedure, and empathy demonstrated for their situation. Only a minority of complainants in both procedures believed that changes would be made as a result of their complaint., Discussion: The absence, in the eyes of most complainants, of tangible results of filing a complaint in both rather formal procedures may serve as an explanation for both the low level of overall satisfaction and the fact that the procedure which was developed specifically for patients did not perform better. To resolve the problem of low satisfaction with complaints handling, procedures should be developed that offer a basic degree of procedural safety. But this procedural safety should not stand in the way of what complainants really want: changes for the better., (Copyright © 2012 Elsevier Ltd and Faculty of Forensic and Legal Medicine. All rights reserved.)

Introduction: To facilitate empowerment, the government encourages patient associations to participate in policy making discussions. To play a crucial role as one of the partners for the government in formulating policy on healthcare, information was needed about the activities and aims of Dutch patient associations. This article describes the development of the monitor in 2005 and 2006 and the most important outcomes and trends for 2007, 2008 and 2009., Methods: Seven years ago, a yearly monitor of patient associations was started to quantify the activities of the patient and consumer movement in the Netherlands. We analyze individual Dutch patient associations focusing on empowerment and advocacy for their own members., Results: Different types of associations pursue different goals to provide a 'voice' for their members. There was a very slight decline in individual members when comparing 2007 and 2009. More than a third of all associations have professional, paid employees. Organizations for disabled or mental disorders have the most volunteers. Peer support meetings for their own members remain the most popular activities. There are many small organizations and a few big ones. Advocacy remains important although the motives differ between patient associations., Conclusion: Dutch patient organizations reported activities they are expected to perform. They try to reduce information asymmetry by informing patients better through several media. They also provide peer support groups to their members. They reach the general public through their social media activities. Their primary focus is providing services to their members., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Objective: To assess how the laws pertaining to the mentally incompetent and their guardians relate to each other and how these topics are handled in daily practice., Design: Structured interviews., Method: We administered a questionnaire to healthcare providers and patient guardians in four sectors: care for mentally disabled, nursing home care, psychiatry and intensive care. The topics discussed during the interviews were mental incompetence, advance directives, representation, resistance, and complaint and conflict resolution. For further exploration of the results, we presented these to focus groups in three sectors. We received written comments from several experts of the intensive care sector., Results: Most healthcare providers' initial assumption was that the assessment of mental competence should be more thorough when the treatment is more drastic. The healthcare providers were unenlightened on matters concerning the tasks and authority of patient guardians. This sometimes created tension when their opinions deviated from those of the guardians. It was notable that guardians of mentally incompetent patients in intensive care perceived themselves to be most informed. There is indeed frequent consultation with relatives or guardians in the intensive care unit; however, they are hardly ever asked to participate in decision making., Conclusion: There is much ambiguousness on issues relating to mental incompetence and representation among healthcare providers. According to the legislation, reconstructing the will of the patient or client is paramount. Guardians should be involved in establishing mental incompetence and in decisions about treatment, care and research. Advance directives also play an important role. This study has resulted in recommendations on legislation, self-regulation and daily practice.

Two matters that have a significant presence in the contemporary Dutch assisted dying debate, are the nature of the suffering required for an assisted death to be lawful, and the issue of who can lawfully assist. This article explores whether the lawful medical assisted dying model is too restrictive in failing to recognise existential suffering, considering selected case studies involving such suffering and lay assisted death. It addresses the question whether The Netherlands would take a trip down a slippery slope if the lawful model of assisted death were extended to cases where individuals are 'tired of life'.

Current research into patient advocacy focuses on attempts of patient groups to mobilise resources and to influence researchers, pharmaceutical companies and policy-makers. This paper adopts a 'framing political opportunities' approach to draw attention to other kinds of advocacy strategies. In a case study of breast cancer patient advocacy of Herceptin reimbursement, it is shown how patient groups tried to gain access to policy-making by means of three different opportunity-framing strategies. Articulation aims at creating awareness through public-agenda building. Negotiation aims at frame alignment between interdependent stakeholders by arranging meetings. Politicisation is a strategy to influence the agendas of political arenas. Patient organisations succeeded in creating awareness and support, which had a considerable impact on other stakeholders. These impacts in turn aided the politicisation of the issue. However, the final impact on reimbursement procedures was only partially achieved due to depoliticising counterstrategies based on persistent ideas buttressing a particular division of responsibilities in the organisation of healthcare. According to these ideas cost control in healthcare is a medical responsibility, not a political one., (© 2010 The Authors. Sociology of Health & Illness © 2010 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.)

Background: Diagnostic errors often result in patient harm. Previous studies have shown that there is large variability in results in different medical specialties. The present study explored diagnostic adverse events (DAEs) across all medical specialties to determine their incidence and to gain insight into their causes and consequences by comparing them with other AE types., Methods: A structured review study of 7926 patient records was conducted. Randomly selected records were reviewed by trained physicians in 21 hospitals across the Netherlands. The method used in this study was based on the well-known protocol developed by the Harvard Medical Practice Study. All AEs with diagnostic error as the main category were selected for analysis and were compared with other AE types., Results: Diagnostic AEs occurred in 0.4% of hospital admissions and represented 6.4% of all AEs. Of the DAEs, 83.3% were judged to be preventable. Human failure was identified as the main cause (96.3%), although organizational- and patient-related factors also contributed (25.0% and 30.0%, respectively). The consequences of DAEs were more severe (higher mortality rate) than for other AEs (29.1% vs 7.4%)., Conclusions: Diagnostic AEs represent an important error type, and the consequences of DAEs are severe. The causes of DAEs were mostly human, with the main causes being knowledge-based mistakes and information transfer problems. Prevention strategies should focus on training physicians and on the organization of knowledge and information transfer.

Objective: This research describes the organization of patient education in hospitals and the conditions that influence this in the Netherlands, Flanders and England., Methods: The research consists of document analysis and interviews., Results: On the organizational level, there can be a patient information desk (England and the Netherlands) and/or a specialized officer on patient education (the Netherlands and England). In the three countries/regions, the organization of patient education on the program level, for patient groups, is characterized by consultations of specialized nurses, patient information materials and patient education policy. Expert centers stimulate patient education through training and quality projects. Lobbying by patient organizations is important for the setting up of patient education. Both expert centers and patient organizations are financially dependent on and respond to policy of the government., Conclusion: Patient education is mostly organized on the organizational level or the program level, or both. Patient organizations and expert centers are conditions that are dependent on the government. Government policy and subsidies are considered as the most important conditions for the organization of patient education in hospitals., Practice Implications: Commitment of officers working in patient education to the Health Promoting Hospital project and the European Association for Communication in Healthcare could stimulate patient education.

Objective: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death., Method: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework., Results: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions., Conclusions: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm., Practice Implications: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death'.

This study explores and describes the perceptions of nurses with respect to everyday client-centered care. A grounded theory study was conducted with 10 Dutch nurses and auxiliary nurses giving home care to chronically ill clients. Participatory observations and semistructured interviews were held. Nurses perceived roles and responsibilities competing with the role as a responsive professional to the client demand: a critical professional, developer of client competencies, individual, and employee. Strategies in balancing between competing responsibilities were distinguished: pleasing, dialoguing, directing, and detaching. Directing (related to impaired client competencies) and detaching (related to organizational barriers) were also used as second choice strategies. Effectively balancing between competing responsibilities was seen in dialoguing and directing as second choice. Conditions identified related to these strategies are awareness of, and responsibility taking for competing responsibilities. Recommendations for practice concern a care relationship and a dialogue with the client, critical ethical reflection, professional autonomy, self-assertiveness and organizational support.

Background: A common finding in several studies is patients' dissatisfaction with complaint handling in health care. The reasons why are for the greater part unknown. The key to an answer may be found in a better understanding of patients' expectations. We investigated patients' expectations of complaint handling in hospitals., Methods: Subjects were patients who had lodged a complaint at the complaint committees of 74 hospitals in the Netherlands. A total of 424 patients (response 75%) completed a written questionnaire at the start of the complaint procedures. Derived from justice theory, we asked what they expected from fair procedures, fair communication and fair outcome of complaint handling., Results: The predominant reason for complainants to lodge a complaint was to prevent the incident from happening again. Complainants expected fair procedures from the complaint committee, in particular an impartial position. This was most important to 87% of the complainants. They also expected to be treated respectfully. Furthermore, they expected the hospital and the professional involved to respond to their complaint. A change in hospital performances was the most wanted outcome of complaint handling, according to 79% of the complainants. They also expected disclosure from the professionals. Professionals should admit a mistake when it had occurred. More complainants (65%) considered it most important to get an explanation than an apology (41%). Only 32% of complainants expected the professional to make an effort to restore the doctor-patient relationship. A minority of complainants (7%) wanted financial compensation., Conclusion: Nearly all complainants want to prevent the incident from happening again, not out of pure altruism, but in order to restore their sense of justice. We conclude that complaint handling that does not allow for change is unlikely to meet patients' expectations. Secondly, complaint handling should not be left exclusively to complaint committees, the responses of hospital and professionals are indispensable.

In the 1970s policy making in The Netherlands took place in sectoral networks, consisting of professional interest groups and like minded civil servants, advisory councils, mp's and departmental ministers. In this article the author examines whether such a sectoral policy network still exists in Dutch health care by comparing past and present data on the background of civil servants, mp's and departmental ministers. Next she describes the political fight against the health care sectoral network, which has gone on for decades. She concludes that the health care sectoral network has been severely weakened, although it remains to be seen whether this will lead to a substantial reduction of health care costs, which was one of the main reasons why politicians fought against sectoral interests in the first place.

Objective: Investigation of the current application of direct-to-consumer (DTC) communication on prescription only medicines via the Intemet in the Netherlands., Method: Questionnaires were sent by e-mail to 43 Dutch innovative pharmaceutical industries and 130 Patient Association and Support Groups (PASGs)., Results: In this pilot study, the response of the pharmaceutical industry was rather low but the impression is that they were willing to invest in DTC communication. The majority of the websites of PASGs did not link to websites of pharmaceutical companies. The PASGs had no opinion whether patients can make a good distinction between DTC advertising and information on websites of the pharmaceutical industry nor about the quality. PASGs did not think unambiguously about the impact on the patient-doctor relationship., Conclusion: The impact of DTC communication on prescription only medicines via the internet is not yet clear in the Netherlands.

Aim: This review discusses two main questions: how suitable is current consumer medication information for minority ethnic groups, and what are effective strategies to overcome existing barriers. The focus is on minority groups whose first language is not the language of the healthcare system., Method: We searched electronic databases and printed scientific journals focusing on (ethnic) minorities, health and/or (intercultural) communication. We also asked a discussion group for references., Results: We found only a few articles on intercultural communication on medication or pharmacy information and one article on the improvement of intercultural communication in the pharmacy. Barriers to the access of medication information by ethnic minorities include second language issues and cultural differences due to different health beliefs, together with the low socio-economic status often seen among ethnic minorities. Cultural differences also exist among different socio-economic classes rather than only among ethnic groups. Most often, informal interpreters are used to improve intercultural communication. However, this may result in miscommunication due to a lack of medical knowledge or training on the part of the interpreter. To minimise miscommunication, bilingual health professionals or health interpreters/advocates can be used, although communication problems may still occur. The effectiveness of written information depends on the literacy skills of the target population. Cultural, medical and dialect biases should be avoided by testing the material. Multimedia systems may be alternatives to conventional written information., Discussion: Barriers that ethnic minorities face in accessing medication information and possible solutions involving counselling and additional tools were identified for pharmacy practice. However, more research is needed to develop effective strategies for patient counselling in pharmacy to meet the needs of ethnic minorities.

Women on Waves was founded to contribute to the prevention of unwanted pregnancy and unsafe abortions throughout the world by direct action. Because national penal laws, including those governing abortion, generally extend only as far as territorial waters (12 miles), Women on Waves made plans to provide reproductive health services on a ship with a mobile clinic, including abortions, outside the territorial waters of countries where abortion is illegal. We went to Ireland first because it was nearby and there was a dedicated pro-choice community with immediate interest in and commitment to the project. Although we encountered problems that meant we could not do abortions, we were contacted by more than 300 women in five days and provided reproductive health information, contraception, workshops and information on where to obtain legal abortions in Europe. In many parts of the world an anti-abortion backlash is taking place. To safeguard our reproductive rights in the face of anti-abortion activities, it is crucial to recapture a pro-active, pro-choice role. Women on Waves helped to make visible the need for legal abortion services in Ireland, and the extensive class and other differences between women able to access abortions abroad and those who could not. We are currently attempting to resolve our status under Dutch law, but until women everywhere have the right to reproductive freedom, we will continue to make waves.

In the Netherlands patients rights are regulated in the 'Medical Treatment Contract Act'. This article describes how dentists deal with those rights in daily practice. From the registers of the Dutch Dental Association 806 dental practitioners were drawn at random. They received a questionnaire on this topic; 41.6% responded. The results show that the implementation of patient rights in dental practice is far from ideal. Over a third of the respondents has had complaints about a lack of information from their patients. Respondents who attended post-graduate courses on dentist-patient communication dealt better with a number of patient rights than respondents who did not attend such courses. Confusion over how to interpret the rights of patients and the duties of the dentist could underlie the lack of implementation of those rights.

This article reports on a survey of the moral problems that Dutch nurses experience during their everyday practice. A questionnaire was developed, based on published literature, panel discussions, in-depth interviews and participation observations. The instrument was tested in a pilot study and proved to be useful. A total of 2122 questionnaires were sent to 91 institutions in seven different health care settings. The results showed that nurses were not experiencing important societal issues such as abortion and euthanasia as morally the most problematic, but rather situations such as verbally aggressive behaviour of colleagues towards patients, keeping silent about errors, and medical treatment given against the wishes of patients. Moral problems occurred especially when nurses experienced feelings of powerlessness with regard to the well-being of patients. Moreover, these moral problems proved to be related to institutional organization, leadership, and collaboration with colleagues and other disciplines. Nurses appeared to have a limited awareness of the moral dimensions of their practice.

This article discusses Dutch visiting (district) nurses' moral considerations of their daily work. It is based on an empirical study using extensive semistructured interviews. The study is informed by the theoretical debate on the 'ethics of care' and the 'ethics of justice'. It is argued that this debate easily turns into an unfruitful contest between these two perspectives: which one is best? The results suggest that visiting nurses' moral considerations of their day-to-day work can be described well in terms of an ethic of care. At the same time, however, concepts and issues central to an ethic of justice are also of crucial importance to their considerations. Nurses' ways of managing to combine both perspectives, even in situations of apparent conflict between them, are described. Thus, clues are provided on how the debate on the ethics of care and the ethics of justice may be carried out in a more fruitful way apart from through hierarchically opposing both perspectives.

Some of the views of the Royal Dutch Medical Association on end-of-life decisions in cases of people suffering from Alzheimer disease and related disorders are presented. The focus of the present report is on the views of the commission regarding active life termination of demented patients with or without an actual and explicit request from the patient. Some comments on these views are made, particularly regarding the notion of "loss of human dignity" (ontluistering) with respect to dementia.

Euthanasia is clinical practice in several countries world-wide. Cancer patients' attitude in this field was focused through a review of case reports and questionnaire-based studies on Medline (1992-97). A total of nine publications including 459 cancer patients from USA, Canada and Holland were found. The majority of patients had poor performance status and advanced disease. At least one third reported themselves positive to euthanasia. Patients below 50 years of age, having superior performance status and not considering themselves religious, more frequently supported euthanasia. Psychological factors seem to be more significant than physical factors for support of euthanasia. Loss of control, being a burden on one's family and loss of dignity are the psychological factors most frequently reported. A "help to live" approach aimed at avoiding patient requests for help to die will mean that health care workers must allocate more of their time to these patients. Overcrowded hospitals with several patients in corridors and lack of nursing-homebeds do not make this situation easier to handle.