What methods are used to promote patient and family involvement in healthcare regulation? A multiple case study across four countries.

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.

Inspectors' responses to adolescents' assessment of quality of care: a case study on involving adolescents in inspections.

BACKGROUND: Users of care services are increasingly participating in inspections of the quality of care. In practice, incorporating service users' views is difficult, as users may have other views on good care than inspectors and thus give information that does not fit the inspectors' assessment criteria. This study compared the views on good care of young care users (adolescents) and inspectors, seeking to understand what the differences and similarities mean to incorporating the users' views in inspections. METHODS: We conducted a single-case study combining document analysis with a meeting with inspectors. The selected case came from a Dutch inspectorate and involved a thematic inspection of care for children growing up poor. RESULTS: Inspectors and adolescents agree on the importance of timely care, creating opportunities for personal development, and a respectful relationship. The views on quality of care differ with regard to sharing information, creating solutions, and the right moment to offer help. We identified three ways inspectors deal with the differences: 1) prioritize their own views, 2) pass the problem onto others to solve, and 3) separate the differing perspectives. With similar viewpoints, inspectors use the adolescents' views to support their assessments. When viewpoints conflict, information from adolescents does not affect the inspectors' judgments. Explanations are related to the vulnerability of the adolescents involved, the inspectorate's organizational rules and routines and the external regulatory context. CONCLUSIONS: Service user involvement in inspections potentially impacts the quality of care. Yet, conflicts between the views of service users and inspectors are not easily overcome in the regulatory context.

Differences in school environment, school policy and actions regarding overweight prevention between Dutch schools. A nationwide survey.

BACKGROUND: Schools are regarded as an important setting for the prevention of overweight. This study presents a nationally representative picture of the obesogenity of the school environment, the awareness of schools regarding overweight, and actions taken by the schools aiming at overweight prevention. In addition, differences between school levels were studied. METHODS: In 2006-2007, questionnaires were sent to all Dutch secondary schools (age group 12-18 years). Prevalences of the outcome variables were calculated for the schools in total and by school level. The association between school level and outcome variables were analysed by a log linear regression. RESULTS: Unhealthy foods and drinks are widely available at secondary schools. One third of the schools indicated that overweight has increased among students and half of the schools agreed that schools were (co)responsible for the prevention of overweight. Only 3% of the schools have a policy on overweight prevention. Small differences were observed between vocational education schools and higher education schools. The presence of vending machines did not differ by school level, but at vocational education schools, the content of the vending machines was less healthy. CONCLUSION: This study describes the current situation at schools which is essential for the development and evaluation of future overweight prevention policies and interventions. In general, secondary schools are not actively involved in overweight prevention and the nutritional environment at most schools could be improved. The small differences between school levels do not give reason for a differential approach for a certain school level for overweight prevention.