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Background: In the regulation of healthcare, the subject of patient and family involvement figures increasingly prominently on the agenda. However, the literature on involving patients and families in regulation is still in its infancy. A systematic analysis of how patient and family involvement in regulation is accomplished across different health systems is lacking. We provide such an overview by mapping and classifying methods of patient and family involvement in regulatory practice in four countries; Norway, England, the Netherlands, and Australia. We thus provide a knowledge base that enables discussions about possible types of involvement, and advantages and difficulties of involvement encountered in practice.Methods: The research design was a multiple case study of patient and family involvement in regulation in four countries. The authors collected 1) academic literature if available and 2) documents of regulators that describe user involvement. Based on the data collected, the authors from each country completed a pre-agreed template to describe the involvement methods. The following information was extracted and included where available: 1) Method of involvement, 2) Type of regulatory activity, 3) Purpose of involvement, 4) Who is involved and 5) Lessons learnt.Results: Our mapping of involvement strategies showed a range of methods being used in regulation, which we classified into four categories: individual proactive, individual reactive, collective proactive, and collective reactive methods. Reported advantages included: increased quality of regulation, increased legitimacy, perceived justice for those affected, and empowerment. Difficulties were also reported concerning: how to incorporate the input of users in decisions, the fact that not all users want to be involved, time and costs required, organizational procedures standing in the way of involvement, and dealing with emotions.Conclusions: Our mapping of user involvement strategies establishes a broad variety of ways to involve patients and families. The four categories can serve as inspiration to regulators in healthcare. The paper shows that stimulating involvement in regulation is a challenging and complex task. The fact that regulators are experimenting with different methods can be viewed positively in this regard. [ABSTRACT FROM AUTHOR]

Background: The Internet is transforming mental health care services by increasing access to, and potentially improving the quality of, care. Internet-based interventions in mental health can potentially play a role in transitions from biomedical to recovery-oriented research and practices, but an overview of what this may entail, current work, and issues that need addressing, is lacking. The objective of this study is to describe Internet-based recovery-oriented interventions (referred to as e-recovery) and current research, and to identify gaps and issues relevant to advancing recovery research and practices through opportunities provided by the Internet.Methods: Five iterative stages of a scoping review framework were followed in searching and analyzing the literature. A recovery framework with four domains and 16 themes was used to deductively code intervention characteristics according to their support for recovery-oriented practices. Only Internet-based interventions used in conjunction with ongoing care were included.Results: Twenty studies describing six e-recovery interventions were identified and originated in Australia, Finland, the Netherlands, Norway and USA. The domain supporting personal recovery was most clearly reflected in interventions, whereas the last three domains, i.e., promoting citizenship, organizational commitment and working relationship were less evident. Support for the formulation and follow-up of personal goals and preferences, and in accessing peer-support, were the characteristics shared by most interventions. Three of the six studies that employed a comparison group used randomization, and none presented definitive findings. None used recovery-oriented frameworks or specific recovery outcome measures. Four of the interventions were specific to a diagnosis.Conclusion: Research about how technologies might aid in illuminating and shaping recovery processes is in its formative stages. We recommend that future e-recovery research and innovation attend to four dimensions: evidence-supported interventions, new knowledge about personal recovery, values-based approaches and Internet as a facilitator for organizational transformation. The incremental changes facilitated by e-recovery may help propel a shift in mental health care toward recovery-oriented practices. [ABSTRACT FROM AUTHOR]

Background: Obtaining a sample that is representative of the group of interest is of utmost importance in questionnaire studies. In a survey using a state authorized web-portal for citizen communication with authorities, we wanted to investigate the view of adult men on patient involvement in health care decision-making regarding Prostate-Specific Antigen test for prostatic cancer. In this paper, we report on sample characteristics and representativeness of our sample in terms of personality and baseline involvement preferences., Methods: We compared personality profiles (BFI-10) and baseline healthcare decision-making preferences (CPS) in our sample (n = 6756) to internationally available datasets. Pooled data from a) US, UK, Canada, Australia, and New Zealand (n = 1512), b) Germany, Netherlands, Switzerland, and Belgium (n = 1136), and c) Norway, Sweden, Finland, and Denmark (n = 1313) were used for BFI-10 comparisons. Regarding CPS, we compared our sample with three previous datasets relating to decision-making in cancer (n = 425, 387, and 199)., Results: Although statistically significant differences particularly appeared in large dataset comparisons, sample BFI-10 and CPS profiles mostly were within the range of those previously reported. Similarity was greatest in BFI-10 comparisons with group a) where no statistically significant difference could be established in factors 'agreeableness' and 'neuroticism' (p = .095 and .578, respectively)., Conclusion: Despite some variation, our sample displays personality and baseline preference profiles that are generally similar to those described in previous international studies. For example, this was the case with the BFI-10 'agreeableness' measure (incl. trust and fault-finding items), an important factor in healthcare decision-making.

Background: Understanding the resilience of healthcare is critically important. A resilient healthcare system might be expected to consistently deliver high quality care, withstand disruptive events and continually adapt, learn and improve. However, there are many different theories, models and definitions of resilience and most are contested and debated in the literature. Clear and unambiguous conceptual definitions are important for both theoretical and practical considerations of any phenomenon, and resilience is no exception. A large international research programme on Resilience in Healthcare (RiH) is seeking to address these issues in a 5-year study across Norway, England, the Netherlands, Australia, Japan, and Switzerland (2018-2023). The aims of this debate paper are: 1) to identify and select core operational concepts of resilience from the literature in order to consider their contributions, implications, and boundaries for researching resilience in healthcare; and 2) to propose a working definition of healthcare resilience that underpins the international RiH research programme., Main Text: To fulfil these aims, first an overview of three core perspectives or metaphors that underpin theories of resilience are introduced from ecology, engineering and psychology. Second, we present a brief overview of key definitions and approaches to resilience applicable in healthcare. We position our research program with collaborative learning and user involvement as vital prerequisite pillars in our conceptualisation and operationalisation of resilience for maintaining quality of healthcare services. Third, our analysis addresses four core questions that studies of resilience in healthcare need to consider when defining and operationalising resilience. These are: resilience 'for what', 'to what', 'of what', and 'through what'? Finally, we present our operational definition of resilience., Conclusion: The RiH research program is exploring resilience as a multi-level phenomenon and considers adaptive capacity to change as a foundation for high quality care. We, therefore, define healthcare resilience as: the capacity to adapt to challenges and changes at different system levels, to maintain high quality care. This working definition of resilience is intended to be comprehensible and applicable regardless of the level of analysis or type of system component under investigation.