Search

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.)

Background: User involvement in long-term care has become official policy in many countries. Procedural and managerial approaches to user involvement have numerous shortcomings in long-term care. What is needed is a different approach that is beneficial and tuned to the needs of clients and professionals., Aim: This article presents a care-ethics approach to involvement. We illustrate this approach and its practical implementation by examining a case example of user involvement in long-term elderly care., Methodology: This case example is based on an action research project in a residential care home in the Netherlands. Seven female clients participated in the process, as well as diverse groups of professionals from this residential care home., Results: The clients were concerned about meals, and collectively they became empowered and came up with ideas for improving meals. Professionals also shared the clients' experiences with meals, first in homogeneous groups and then in heterogeneous meetings with the client group. This process led to the development of partnership relations between clients and professionals., Conclusion: Our findings suggest that a care-ethics approach to user involvement is a means to increase resident empowerment in long-term care. Clients and professionals start sharing their experiences and values through dialogue, and they develop mutual trust and openness while doing so., (© 2014 John Wiley & Sons Ltd.)

Aims and Objectives: The objective of this study was to evaluate whether care provided in the care programmes matched the needs of older people., Background: Care programmes were implemented in primary-care settings in the Netherlands to identify frail older people and to prevent further deterioration of health., Design and Methods: In total, 23 older people participated in in-depth interviews. Within this study, three older people participated as co-researchers; they gathered and analysed the data together with the academic researchers. Content analysis was used to analyse the data., Results: Two categories emerged from the data: 'Losing connections' and 'Receiving support to reconnect.' 'Losing connections' reflects the needs of older people and 'Receiving support to reconnect' reflects their experience and the appreciated aspects of the provided care. A relationship of trust with the practice nurse (PN) appeared to be an important aspect of care, as it fostered the sharing of feelings and issues other than physical or medical problems that could not be shared with the general practitioner. The PNs are experienced as connectors, who help to restore feelings of connectedness and older peoples' access to resources in the community., Conclusions: The relationship with the PN was experienced as valuable because of the feelings of 'connectedness' it created. Through this connectedness, older people could discuss feelings of loneliness, depression and frustration in receiving and acquiring the appropriate resources and services with the PNs. Furthermore, the relationship with the PN helped the older people to gain access to other health professionals and services., Implications for Practice: The results imply that care for frail older people should include an awareness of the importance of the trusting relationship. Nurses can play a vital role in creating a trusting relationship and are able to bridge the gap between older people and other professionals and services., (© 2014 John Wiley & Sons Ltd.)

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.)

Aim: The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care., Background: Literature shows that patients are beginning to develop their own voice and agenda's with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care. METHODS/SEARCH STRATEGY: Information was gathered from Western countries with similar economic, societal and health-care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non-scientific publications were also included., Results: The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues., Conclusions: Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks., (© 2011 John Wiley & Sons Ltd.)

Background:   Different strategies by which patients can be involved in research include consultation, control and collaboration. This article focuses on collaboration within research teams and considers this with reference to a research project about setting a social-scientific agenda for health research from the perspectives of patients with a chronic kidney disease (CKD)., Objective:   To examine the dynamics and dialogues in a collaboration between patient research partners and professional researchers., Design:   A responsive methodology was used in the research project. Two patient research partners participated in the research team. Twenty-seven patients with CKD and parents of young children with CKD were interviewed, seven focus groups were organized and observations were held at a dialysis centre., Results:   During the collaboration, the research partners and professional researchers engaged in a mutual learning process in all stages of the project. The professional researchers gave the research partners a sense of ownership in the research process. The research partners could relate to the lives of patients by using their experiential knowledge. In the context of collaborative working, this helped shape an agenda for research., Conclusion and Discussion:   The active involvement of patients as research partners can add value to a research strategy, especially when research partners and professional researchers engage in a dialogue that is open, inclusive and deliberative. Issues for discussion include the possibility of 'over-involvement', the research profile and training of research partners and whether participation of patients is restricted to certain types of research., (© 2011 Blackwell Publishing Ltd.)

OBJECTIVE To analyse the results of an action research process, the aim of which is to involve patients in fundamental psychiatric genomics research, against theoretical backgrounds that formulate a Dialogue Model for patient involvement. BACKGROUND Mixed views continue to exist about the value, appropriateness and potential of involving consumers and patients in basic medical research. There is a need to learn from practical examples. DESIGN An action research process was set up to facilitate and stimulate the involvement of a Dutch patient organization and a family organization in a psychiatric research consortium. FINDINGS The premises and procedures of the Dialogue Model constitute good guidelines for involvement in fundamental research. However, the normative core features for patient involvement underlying the model prove problematic due to: (i) properties of complex psychiatric genomics research; (ii) the entanglement of subjectivity and basic psychiatric science; (iii) universal notions of citizenship and difficulties of delineating the patient in psychiatric genomics research. CONCLUSION Interaction and dialogue among scientists, patients and family members are possible in fundamental genomics research. The best approach for involvement would seem to be based on the creation of common ground and an evolving dialogue, which the guidelines of the Dialogue Model can provide. The challenge here will be to create also a dialogue on the normative anchor points of the dialogue process and to identify and monitor power relations inherent in these (tangible) dialogues., (© 2010 Blackwell Publishing Ltd.)