Patient participation in collective healthcare decision making: the Dutch model

Objective  To study whether the Dutch participation model is a good model of participation.
Background  Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are involved in many formal decision-making processes. This model can be described as neo-corporatist.
Design  We did 52 interviews with actors in the healthcare field, 35 of which were interviews with representatives of patient organizations and 17 with actors that involved patient organizations in their decision making.
Results  Dutch patient organizations have many opportunities to participate in formal healthcare decision making and, as a result, have become institutionalized. Although there were several examples identified in which patient organizations were able to influence decision making, patient organizations remain in a dependent position, which they try to overcome through professionalization.
Discussion  Although this model of participation gives patient organizations many opportunities to participate, it also causes important tensions. Many organizations cannot cope with all the participation possibilities attributed to them. This participation abundance can therefore cause redistribution effects. Furthermore, their dependent position leads to the danger of being put to instrumental use. Moreover, professionalization causes tensions concerning empowerment possibilities and representativeness.
Conclusion  Although the Dutch model tries to make patient organizations an equal party in healthcare decision making, this goal is not reached in practice. It is therefore important to study more closely which subjects patients can and should contribute to, and in what way.     

Patient involvement in patient safety: what factors influence patient participation and engagement?

BACKGROUND: Patients can play an important role in improving patient safety by becoming actively involved in their health care. However, there is a paucity of empirical data on the extent to which patients take on such a role. In order to encourage patient participation in patient safety we first need to assess the full range of factors that may be implicated in such involvement. OBJECTIVE: To delineate factors that could affect the participation of the patient in quality and safety issues in their health care. METHOD: Literature review of patient involvement in health care, drawing from direct evidence (specifically from the safety context) and indirect evidence (extrapolated from treatment decision-making research and the wider patient involvement in health care literature); synthesis and conceptual framework developed, illustrating the known and putative factors that could affect the participation of the patient in safety issues in their health care. MAIN RESULTS: Five categories of factors emerged that could affect patient involvement in safety: patient-related (e.g. patients' demographic characteristics), illness-related (e.g. illness severity), health-care professional-related (e.g. health care professionals' knowledge and beliefs), health care setting-related (e.g. primary or secondary care), and task-related (e.g. whether the required patient safety behaviour challenges clinicians' clinical abilities). CONCLUSION: The potential for engaging patients in patient safety is considerable but further research is needed to examine the influences on patient involvement, the limits and the possible dangers. Patients can act as 'safety buffers' during their care but the responsibility for their safety must remain with the health care professionals.     

Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda

AIM: The study 'Listening to the Views of People Affected by Cancer About Cancer Research' is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper. DESIGN: The study adopts a 'participatory research' approach entailing the formation of a 'reference group' and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching 'hard to reach' representatives directly through community groups and participating study sites. FINDINGS: Experiences from this study illustrate that a 'participatory research' approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research. CONCLUSIONS: 'Participatory research' offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.     

Improving participation outcomes and interventions in neurodisability: co‐designing future research

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritized these for improvement: self‐care, friends and social, and physical activity ranked the highest; (3) identified 11 potential intervention categories for targeting the top priority, self‐care, through eight hypothesized change mechanisms and agreed for the interventions to be delivered as a ‘Menu of Interventions’ for personalized self‐care support; and (4) designed a before‐and‐after mixed methods feasibility study to evaluate the Menu with children and young people (0–12 years) and their parents and therapists.     

Patient issues in health research and quality of care: an inventory and data synthesis

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.     

Applying Patient and Public Involvement in preclinical research: A co‐created scoping review

BackgroundPatient and Public Involvement (PPI) in research aims to improve the quality, relevance and appropriateness of research. PPI has an established role in clinical research where there is evidence of benefit, and where policymakers and funders place continued emphasis on its inclusion. However, for preclinical research, PPI has not yet achieved the same level of integration. As more researchers, including our team, aim to include PPI in preclinical research, the development of an evidence‐based approach is important. Therefore, this scoping review aimed to identify and map studies where PPI has been used in preclinical research and develop principles that can be applied in other projects.MethodsA scoping review was conducted to search the literature in Medline (PubMed), EMBASE, CINAHL, PsycInfo and Web of Science Core Collection to identify applied examples of preclinical PPI. Two independent reviewers conducted study selection and data extraction separately. Data were extracted relating to PPI in terms of (i) rationale and aims, (ii) approach used, (iii) benefits and challenges, (iv) impact and evaluation and (v) learning opportunities for preclinical PPI. Findings were reviewed collaboratively by PPI contributors and the research team to identify principles that could be applied to other projects.ResultsNine studies were included in the final review with the majority of included studies reporting PPI to improve the relevance of their research, using approaches such as PPI advisory panels and workshops. Researchers report several benefits and challenges, although evidence of formal evaluation is limited.ConclusionAlthough currently there are few examples of preclinical research studies reporting empirical PPI activity, their findings may support those aiming to use PPI in preclinical research. Through collaborative analysis of the scoping review findings, several principles were developed that may be useful for other preclinical researchers.Patient or Public ContributionThis study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5‐year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers and PPI facilitators collaborated as co‐authors on the conceptualization, execution and writing of this review, including refining the findings into the set of principles reported here.     

Collaboration and co‐ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team

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.