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BACKGROUND: Emerging technologies such as artificial intelligence (AI) require an early-stage assessment of potential societal and ethical implications to increase their acceptability, desirability, and sustainability. This paper explores and compares 2 of these assessment approaches: the responsible innovation (RI) framework originating from technology studies and the co-design approach originating from design studies. While the RI framework has been introduced to guide early-stage technology assessment through anticipation, inclusion, reflexivity, and responsiveness, co-design is a commonly accepted approach in the development of technologies to support the care for older adults with frailty. However, there is limited understanding about how co-design contributes to the anticipation of implications. OBJECTIVE: This paper empirically explores how the co-design process of an AI-based decision support system (DSS) for dementia caregivers is complemented by explicit anticipation of implications. METHODS: This case study investigated an international collaborative project that focused on the co-design, development, testing, and commercialization of a DSS that is intended to provide actionable information to formal caregivers of people with dementia. In parallel to the co-design process, an RI exploration took place, which involved examining project members' viewpoints on both positive and negative implications of using the DSS, along with strategies to address these implications. Results from the co-design process and RI exploration were analyzed and compared. In addition, retrospective interviews were held with project members to reflect on the co-design process and RI exploration. RESULTS: Our results indicate that, when involved in exploring requirements for the DSS, co-design participants naturally raised various implications and conditions for responsible design and deployment: protecting privacy, preventing cognitive overload, providing transparency, empowering caregivers to be in control, safeguarding accuracy, and training users. However, when comparing the co-design results with insights from the RI exploration, we found limitations to the co-design results, for instance, regarding the specification, interrelatedness, and context dependency of implications and strategies to address implications. CONCLUSIONS: This case study shows that a co-design process that focuses on opportunities for innovation rather than balancing attention for both positive and negative implications may result in knowledge gaps related to social and ethical implications and how they can be addressed. In the pursuit of responsible outcomes, co-design facilitators could broaden their scope and reconsider the specific implementation of the process-oriented RI principles of anticipation and inclusion.
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Inteligência Artificial , Demência , Humanos , Demência/terapia , Inteligência Artificial/ética , Cuidadores/psicologia , Sistemas de Apoio a Decisões ClínicasRESUMO
BACKGROUND: Although the use of artificial intelligence (AI)-based technologies, such as AI-based decision support systems (AI-DSSs), can help sustain and improve the quality and efficiency of care, their deployment creates ethical and social challenges. In recent years, a growing prevalence of high-level guidelines and frameworks for responsible AI innovation has been observed. However, few studies have specified the responsible embedding of AI-based technologies, such as AI-DSSs, in specific contexts, such as the nursing process in long-term care (LTC) for older adults. OBJECTIVE: Prerequisites for responsible AI-assisted decision-making in nursing practice were explored from the perspectives of nurses and other professional stakeholders in LTC. METHODS: Semistructured interviews were conducted with 24 care professionals in Dutch LTC, including nurses, care coordinators, data specialists, and care centralists. A total of 2 imaginary scenarios about AI-DSSs were developed beforehand and used to enable participants articulate their expectations regarding the opportunities and risks of AI-assisted decision-making. In addition, 6 high-level principles for responsible AI were used as probing themes to evoke further consideration of the risks associated with using AI-DSSs in LTC. Furthermore, the participants were asked to brainstorm possible strategies and actions in the design, implementation, and use of AI-DSSs to address or mitigate these risks. A thematic analysis was performed to identify the opportunities and risks of AI-assisted decision-making in nursing practice and the associated prerequisites for responsible innovation in this area. RESULTS: The stance of care professionals on the use of AI-DSSs is not a matter of purely positive or negative expectations but rather a nuanced interplay of positive and negative elements that lead to a weighed perception of the prerequisites for responsible AI-assisted decision-making. Both opportunities and risks were identified in relation to the early identification of care needs, guidance in devising care strategies, shared decision-making, and the workload of and work experience of caregivers. To optimally balance the opportunities and risks of AI-assisted decision-making, seven categories of prerequisites for responsible AI-assisted decision-making in nursing practice were identified: (1) regular deliberation on data collection; (2) a balanced proactive nature of AI-DSSs; (3) incremental advancements aligned with trust and experience; (4) customization for all user groups, including clients and caregivers; (5) measures to counteract bias and narrow perspectives; (6) human-centric learning loops; and (7) the routinization of using AI-DSSs. CONCLUSIONS: The opportunities of AI-assisted decision-making in nursing practice could turn into drawbacks depending on the specific shaping of the design and deployment of AI-DSSs. Therefore, we recommend considering the responsible use of AI-DSSs as a balancing act. Moreover, considering the interrelatedness of the identified prerequisites, we call for various actors, including developers and users of AI-DSSs, to cohesively address the different factors important to the responsible embedding of AI-DSSs in practice.
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Inteligência Artificial , Tomada de Decisões , Assistência de Longa Duração , Pesquisa Qualitativa , Humanos , Assistência de Longa Duração/métodos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Países Baixos , Entrevistas como AssuntoRESUMO
OBJECTIVE: To explore the relationship between personal characteristics of older adults with multiple chronic conditions (MCCs) and perceived shared decision making (SDM) resp. decisional conflict. METHODS: In a video-observational study (N = 213) data were collected on personal characteristics. The main outcomes were perceived level of SDM and decisional conflict. The mediating variable was participation in the SDM process. A twostep mixed effect multilinear regression and a mediation analysis were performed to analyze the data. RESULTS: The mean age of the patients was 77.3 years and 56.3% were female. Health literacy (ß.01, p < .001) was significantly associated with participation in the SDM process. Education (ß = -2.43, p = .05) and anxiety (ß = -.26, p = .058) had a marginally significant direct effect on the patients' perceived level of SDM. Education (ß = 12.12, p = .002), health literacy (ß = -.70, p = .005) and anxiety (ß = 1.19, p = .004) had a significant direct effect on decisional conflict. The effect of health literacy on decisional conflict was mediated by participation in SDM. CONCLUSION: Health literacy, anxiety and education are associated with decisional conflict. Participation in SDM during consultations plays a mediating role in the relationship between health literacy and decisional conflict. PRACTICE IMPLICATIONS: Tailoring SDM communication to health literacy levels is important for high quality SDM.
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Ansiedade , Conflito Psicológico , Tomada de Decisão Compartilhada , Letramento em Saúde , Participação do Paciente , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Ansiedade/psicologia , Doença Crônica/psicologia , Doença Crônica/terapia , Comunicação , Tomada de Decisões , Escolaridade , Participação do Paciente/psicologia , Relações Médico-Paciente , Gravação em VídeoRESUMO
For better serving people's complex needs the subsequent movement to person-centred integrated care, requires inter-organisational cooperation and service provision by domain-overarching networks and alliances. In the development to these networks, it is relevant to explore which accountability approaches are appropriate for local inter-organisational healthcare governance. Therefore, in a scoping review we studied the current state of knowledge and practice of accountability in healthcare in the Netherlands. We found that two of the included 41 studies show characteristics of accountability towards healthcare with characteristics of integration care components, such as integration of services with accompanying accountability arrangements and development of networked accountability. The first studies are found in the literature which report on accountability in integrated care. With this we add to the international discussion about accountability as an aspect of integrated care governance, by providing insight into the current state of art of accountability in Dutch healthcare.
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Etnicidade , Instalações de Saúde , Humanos , Países Baixos , Assistência Centrada no Paciente , Responsabilidade SocialRESUMO
BACKGROUND: To evaluate the effects of a shared decision making (SDM) intervention for older adults with multiple chronic conditions (MCCs). METHODS: A pragmatic trial evaluated the effects of the SDMMCC intervention, existing of SDM training for nine geriatricians in two hospitals and a preparatory tool for patients. A prospective pre-intervention post-intervention multi-center clinical study was conducted in which an usual care group of older patients with MCC and their informal caregivers was included before the implementation of the intervention and a new cohort of patients and informal caregivers after the implementation of the intervention. SDM was observed using the OPTIONMCC during video-recorded consultations. Patient- and caregivers reported outcomes regarding their role in SDM, involvement, perceived SDM and decisional conflict were measured. The differences between groups regarding the level of observed SDM (OPTIONMCC) were analyzed with a mixed model analysis. Dichotomous patient-reported outcomes were analyzed with a logistic mixed model. RESULTS: From two outpatient geriatric clinics 216 patients with MCCs participated. The mean age was 77.3 years, and 56.3% of patients were female. No significant difference was found in the overall level of SDM as measured with the OPTIONMCC or in patient-reported outcomes. However, at item level the items discussing 'goals', 'options', and 'decision making' significantly improved after the intervention. The items discussing 'partnership' and 'evaluating the decision-making process' showed a significant decrease. Fifty-two percent of the patients completed the preparatory tool, but the results were only discussed in 12% of the consultations. CONCLUSION: This study provides scope for improvement of SDM in geriatrics. Engaging older adults with MCCs and informal caregivers in the decision making process should be an essential part of SDM training for geriatricians, beyond the SDM steps of explaining options, benefits and harms. More attention should be paid to the integration of preparatory work in the consultation.
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Tomada de Decisão Compartilhada , Múltiplas Afecções Crônicas , Humanos , Feminino , Idoso , Masculino , Estudos Prospectivos , Pacientes Ambulatoriais , Instituições de Assistência Ambulatorial , GeriatrasRESUMO
BACKGROUND AND OBJECTIVES: Artificial intelligence (AI) is widely positioned to become a key element of intelligent technologies used in the long-term care (LTC) for older adults. The increasing relevance and adoption of AI has encouraged debate over the societal and ethical implications of introducing and scaling AI. This scoping review investigates how the design and implementation of AI technologies in LTC is addressed responsibly: so-called responsible innovation (RI). RESEARCH DESIGN AND METHODS: We conducted a systematic literature search in 5 electronic databases using concepts related to LTC, AI, and RI. We then performed a descriptive and thematic analysis to map the key concepts, types of evidence, and gaps in the literature. RESULTS: After reviewing 3,339 papers, 25 papers were identified that met our inclusion criteria. From this literature, we extracted 3 overarching themes: user-oriented AI innovation; framing AI as a solution to RI issues; and context-sensitivity. Our results provide an overview of measures taken and recommendations provided to address responsible AI innovation in LTC. DISCUSSION AND IMPLICATIONS: The review underlines the importance of the context of use when addressing responsible AI innovation in LTC. However, limited empirical evidence actually details how responsible AI innovation is addressed in context. Therefore, we recommend expanding empirical studies on RI at the level of specific AI technologies and their local contexts of use. Also, we call for more specific frameworks for responsible AI innovation in LTC to flexibly guide researchers and innovators. Future frameworks should clearly distinguish between RI processes and outcomes.
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Inteligência Artificial , Assistência de Longa Duração , Humanos , Idoso , Bases de Dados Factuais , Pesquisa Empírica , PesquisadoresRESUMO
Introduction: The diverse nature of people's care needs requires collaboration between different organisations and sectors. One way of achieving such collaboration is through integrated care service networks. Decision-making is considered an important aspect of network governance and key to achieve further integration of care services. As integrated care scholars only implicitly seem to touch upon the issue of decision-making, we aimed to identify multiple decision-making dilemmas. Theory and Methods: A systematic literature review was conducted of eighteen empirical studies in which decision-making dilemmas in integrated care service networks were inductively identified. To frame and understand these dilemmas, we partly drew on Provan and Kenis' governance models and their hypothesised decision-making dilemma for service networks. Results: Identified decision-making dilemmas included 1) autonomy versus interdependence, 2) diversity versus coherence, and 3) self-interest versus common goals. In line with Provan and Kenis' hypothesis, we highlight a cross-cutting dilemma of inclusiveness (all viewpoints are considered hence widely supported decisions) vs. efficiency (reaching timely decisions). Discussion and conclusion: We believe that network- and 'systemic' stakeholders both need to reflect upon and learn from decision-making dilemmas to work towards widely supported and adequate decisions. This is important for achieving aligned and holistic care services that many people desire.
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Introduction: In addition to the functional aspects of healthcare integration, an understanding of its normative aspects is needed. This study explores the importance of values underpinning integrated, people-centred health services, and examines similarities and differences among the values prioritised by actors across Europe. Methods: Explorative cross-sectional design with quantitative analysis. A questionnaire of 18 values was conducted across Europe. A total of 1,013 respondents indicated the importance of each of the values on a nine-point scale and selected three most important values. Respondents were clustered in four actor groups, and countries in four European sub-regions. Results: The importance scores of values ranged from 7.62 to 8.55 on a nine-point scale. Statistically significant differences among actor groups were found for ten values. Statistically significant differences across European sub-regions were found for six values. Our analysis revealed two clusters of values: 'people related' and 'governance and organisation'. Discussion and conclusion: The study found that all 18 values in the set are considered important by the respondents. Additionally, it revealed distinctions in emphasis among the values prioritised by actor groups and across sub-regions. The study uncovered two clusters of values that contribute to a conceptually based definition of integrated, people-centred health services.
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In the development process of integrated care many impeding factors occur. Our premise is, that many of these barriers are related to the differences in values or perspectives. This article aims to clarify what an important challenge is for the further development of integrated care and for integrated care research. Professionals and managers in integrated care need to cope with and embrace uncertainty. However, that requires collective reflexivity. Collective reflexivity is a means to investigate the values of the partners interacting to co-create integrated care and to remove the roadblocks on the way.
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OBJECTIVE: To provide insight into professionals' perceptions of and experiences with shared decision-making (SDM) in the treatment of symptomatic patients with severe aortic stenosis (AS). METHODS: A semistructured interview study was performed in the heart centres of academic and large teaching hospitals in the Netherlands between June and December 2020. Cardiothoracic surgeons, interventional cardiologists, nurse practitioners and physician assistants (n=21) involved in the decision-making process for treatment of severe AS were interviewed. An inductive thematic analysis was used to identify, analyse and report patterns in the data. RESULTS: Four primary themes were generated: (1) the concept of SDM, (2) knowledge, (3) communication and interaction, and (4) implementation of SDM. Not all respondents considered patient participation as an element of SDM. They experienced a discrepancy between patients' wishes and treatment options. Respondents explained that not knowing patient preferences for health improvement hinders SDM and complicating patient characteristics for patient participation were perceived. A shared responsibility for improving SDM was suggested for patients and all professionals involved in the decision-making process for severe AS. CONCLUSIONS: Professionals struggle to make highly complex treatment decisions part of SDM and to embed patients' expectations of treatment and patients' preferences. Additionally, organisational constraints complicate the SDM process. To ensure sustainable high-quality care, professionals should increase their awareness of patient participation in SDM, and collaboration in the pathway for decision-making in severe AS is required to support the documentation and availability of information according to the principles of SDM.
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Estenose da Valva Aórtica , Tomada de Decisão Compartilhada , Estenose da Valva Aórtica/diagnóstico , Estenose da Valva Aórtica/terapia , Comunicação , Tomada de Decisões , Humanos , Participação do Paciente , Preferência do PacienteRESUMO
BACKGROUND: Client-centred care serves as the foundation for healthcare policy. Indeed, various instruments for assessing clients' experiences of care and support are increasingly used to provide insights into the quality, and client-centred nature, of the care and support provided, which, in turn, aids the development of subsequent improvements. The unique characteristics of care and support for people with intellectual disabilities (ID), such as the need for both lifelong and life-wide care and support across all aspects of clients' lives, led to an initiative within Dutch ID care to jointly develop a range of instruments to assess the experiences of clients receiving ID care and support. Individual clients' experiences and suggestions for improvement, which are embedded in clients' care plan cycles, constitute the foundation of this Range of Instruments. This paper provides a unique, bottom-up, exhaustive account of the process of developing the Range of instruments used to assess the experiences of clients in the field of Dutch ID care. METHODS: Relevant documents at three levels (i.e. 1) national documents, such as policy papers and governmental reports, 2) documents and reports from the Dutch Association of Healthcare Providers for People with Disabilities (VGN) along with minutes from the meetings of the expert Committee who assessed the instruments, and 3) correspondence between the Committee and developers as well as the forms used in the assessment process for each instrument) were qualitatively analysed by two researchers who had no affiliation with the development of the Range of instruments used to assess clients' experiences in ID care and support. All of the documents were inductively coded using a thematic analytical approach. Informants who were either currently or previously involved in the development of these instruments were asked to provide clarification over the documents themselves and to explain the context in which they were produced. RESULTS: The development of the range of instruments can be classified into four phases, namely: 1) supporting the bottom-up development of initiatives to assess clients' experiences, 2) focusing on learning and further development, 3) stimulating exchange between the developers and users of the instruments and the Committee responsible for assessing them, and 4) further development in response to the changing times and new landscape. CONCLUSIONS: The range of instruments were found to be appropriate for a variety of clients in ID care and support, specifically in terms of assessing their individual experiences and gaining insight into their suggestions for improvement, and effective in terms of collaboratively improving the quality of ID care and support. In so doing, these instruments potentially provide an avenue through which clients' experiences can be embedded in the process of ID care and support. Other specific features in the development of these instruments, namely their incremental adoption, ongoing evaluation and strong practice orientation, were also found to be suitable for other care contexts' attempts to respond to the top-down policy objectives of client-centeredness and translating outcomes into direct care practice.
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Deficiência Intelectual , Política de Saúde , Humanos , Deficiência Intelectual/terapiaRESUMO
INTRODUCTION: In the Netherlands multiple single, cross sector and cross governance level policy reforms were introduced to improve health and social care and decrease fragmentation. In addition to legislative and funding measures, the governmental strategy was to set up long-lasting improvement programs and supported by applied research. DESCRIPTION: Five national improvement programs on chronic disease management, maternity care, youth care, care for older people and dementia care were analysed. The Laws of integration of Leutz were used as an analytical framework. The programs demonstrated a mixture of employing policy, quality and financial measures to stimulate coherence and integration. DISCUSSION: The Laws that Leutz formulated are to a large extent applicable in the Dutch context. However, the characteristics of the system of governance being corporatist in its structure and its culture imply that it is hard to distinguish single actors being in the lead. Integration is a more complex process and requires more dynamics, than the law 'keep it simple, stupid' suggests. CONCLUSIONS: In the Dutch context integration implies a permanent pursuit of aligning mechanisms for integration. Sustainable integration requires long-standing efforts of all relevant stakeholders and cannot be achieved quickly. It may take a decade of consistently applying a mix of policy instruments.
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BACKGROUND: To help enhance the quality of integrated stroke care delivery, regional stroke services networks in the Netherlands participated in a self-assessment study in 2012, 2015 and 2019. METHODS: Coordinators of the regional stroke services networks filled out an online self-assessment questionnaire in 2012, 2015 and 2019. The questionnaire, which was based on the Development Model for Integrated Care, consisted of 97 questions in nine clusters (themes). Cluster scores were calculated as proportions of the activities implemented. Associations between clusters and features of stroke services were assessed by regression analysis. RESULTS: The response rate varied from 93.1% (2012) to 85.5% (2019). Over the years, the regional stroke services networks increased in 'size': the median number of organisations involved and the volume of patients per network increased (7 and 499 in 2019, compared to 5 and 364 in 2012). At the same time, fewer coordinators were appointed for more than 1 day a week in 2019 (35.1%) compared to 2012 (45.9%). Between 2012 and 2019, there were statistically significantly more elements implemented in four out of nine clusters: 'Transparent entrepreneurship' (MD = 18.0% F(1) = 10.693, p = 0.001), 'Roles and tasks' (MD = 14.0% F(1) = 9.255, p = 0.003), 'Patient-centeredness' (MD = 12.9% F(1) = 9.255, p = 0.003), and 'Commitment' (MD = 11.2%, F(1) = 4.982, p = 0.028). A statistically significant positive correlation was found for all clusters between implementation of activities and age of the network. In addition, the number of involved organisations is associated with better execution of implemented activities for 'Transparent entrepreneurship', 'Result-focused learning' and 'Quality of care'. Conversely, there are small but negative associations between the volume of patients and implementation rates for 'Interprofessional teamwork' and 'Patient-centredness'. CONCLUSION: This long-term analyses of stroke service development in the Netherlands, showed that between 2012 and 2019, integrated care activities within the regional stroke networks increased. Experience in collaboration between organisations within a network benefits the uptake of integrated care activities.
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PURPOSE: The purpose of this paper is to synthesize the existing evidence on leadership that best matches nursing home care, with a focus on behaviors, effects and influencing factors. DESIGN/METHODOLOGY/APPROACH: A narrative review was performed in three steps: the establishment of scope, systematic search in five databases and assessment and analysis of the literature identified. FINDINGS: A total of 44 articles were included in the review. The results of the study imply that a stronger focus on leadership behaviors related to the specific context rather than leadership styles could be of added value in nursing home care. RESEARCH LIMITATIONS/IMPLICATIONS: Only articles applicable to nursing home care were included. The definition of "nursing home care" may differ between countries. This study only focused on the academic literature. Future research should focus on strategies and methods for the translation of leadership into behavior in practice. PRACTICAL IMPLICATIONS: A broader and more conceptual perspective on leadership in nursing homes - in which leadership is seen as an attribute of all employees and enacted in multiple layers of the organization - could support leadership practice. ORIGINALITY/VALUE: Leadership is considered an important element in the delivery of good quality nursing home care. This study provides insight into leadership behaviors and influencing contextual factors specifically in nursing homes.
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Liderança , Casas de Saúde , HumanosRESUMO
BACKGROUND: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. METHODS: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. RESULTS: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient's capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. CONCLUSIONS: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.
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Tomada de Decisão Compartilhada , Múltiplas Afecções Crônicas , Idoso , Cuidadores , Tomada de Decisões , Humanos , Múltiplas Afecções Crônicas/terapia , Participação do Paciente , Qualidade de VidaRESUMO
As integrated care is recognized as crucial to meet the challenges of chronic conditions such as Parkinson's disease (PD), integrated care networks have emerged internationally and throughout Germany. One of these networks is the Parkinson Network Eastern Saxony (PANOS). PANOS aims to deliver timely and equal care to PD patients with a collaborative intersectoral structured care pathway. Additional components encompass personalized case management, an electronic health record, and communicative and educative measures. To reach an intersectoral consensus of the future collaboration in PANOS, a structured consensus process was conducted in three sequential workshops. Community-based physicians, PD specialists, therapists, scientists and representatives of regulatory authorities and statutory health insurances were asked to rate core pathway-elements and supporting technological, personal and communicative measures. For the majority of core elements/planned measures, a consensus was reached, defined as an agreement by >75% of participants. Additionally, six representatives from all partners involved in the network-design independently assessed PANOS based on the Development Model for Integrated Care (DMIC), a validated model addressing the comprehensiveness and maturity of integrated care concepts. The results show that PANOS is currently in an early maturation state but has the potential to comprehensively represent the DMIC if all planned activities are implemented successfully. Despite the favorable high level of consensus regarding the PANOS concept and despite its potential to become a balanced integrated care concept according to the DMIC, its full implementation remains a considerable challenge.