Rudolf Forster

Voice or Choice? Patient and Public Involvement in the National Health Service in England under New Labour:

Involving patients, caregivers, and citizens in health care and health policy has been recommended by international organizations for over a decade. This article focuses on developments in England under New Labour, places them in the context of broader health policy, and assesses them in the light of the limited empirical evidence. The authors consider a range of possible explanations for these developments. They suggest that we need to distinguish between individual and collective forms of patient involvement, and they chart patient and public involvement in England before New Labour and in three distinct phases under New Labour. There has been a significant extension of opportunities for individual patients and the public to communicate their views, albeit with twists and turns in the policy over time. The authors explain these developments in terms of New Labours ideological attachment to pragmatism and the Third Way, political calculations about the need to reinvigorate political culture, and attempts to enhance cost-effectiveness. Patient and public involvement seems to be here to stay, but whether this will result in greater equity and a real shift in power away from professionals to citizens and patients is another matter.

Health consumer and patients' organizations in Europe: towards a comparative analysis

Despite the rise of health consumer and patients’ organizations (HCPOs) in modern health‐care systems, studies are few and far between. In particular there is a lack of comparative research across Europe and at the pan‐European level. In an effort to address this gap, an expert workshop was held in Vienna in February 2006. This involved 22 delegates from 10 European Countries and was funded by the European Science Foundation (ESF). The workshop reviewed the development of HCPOs in Europe and their role in the policy process in order to establish a platform for further research in this field. It found evidence of an increase in HCPOs across European countries, increased engagement with policy makers and political institutions, and the creation of alliance organizations bringing together HCPOs across the sector. However, variations between countries were observed, relating to different political, cultural and health system contexts. There was no consensus on whether the rise of HCPOs constituted a new social movement. An increase in HCPO activity at the pan‐European level was noted, reflecting the increased interest of EU institutions in health policy. At both domestic and European levels, concerns about the representativeness and legitimacy of HCPOs were raised as well as questions about their independence (notably with regard to the drugs industry). HCPOs face a number of obstacles including: lack of capacity and resources, fragmentation and the power of more established interests within the health‐care system. The workshop concluded that further research is needed in this field, in the form of a comparative study of HCPOs in European countries and an analysis of their activities at the pan‐European level.

Effects of student participation in school health promotion: A systematic review

The aim of this systematic review was to summarize systematically the existing evidence for the effects of student participation in designing, planning, implementing and/or evaluating school health promotion measures. The focus was on the effects of participation in school health promotion measures rather than on student involvement at school in general. Participation is a core value for health promotion but empirical evidence of its outcomes is scarce. We searched major bibliographic databases (including ASSIA, ERIC, PsycINFO, Scopus, PubMed and the Social Sciences Citation Index). Two reviewers independently decided about inclusion and exclusion of the identified abstracts (n = 5075) and full text articles. Of the 90 full text articles screened, 26 papers met the inclusion criteria. We identified evidence for positive effects, especially for the students themselves, the school as organization, and interactions and social relations at school. Almost all included studies showed personal effects on students referring to an increased satisfaction, motivation and ownership, an increase in skills, competencies and knowledge, personal development, health-related effects and influence on student perspective. Given that student participation has more been discussed as a value, or ideal of health promotion in schools, these findings documenting its effectiveness are important. However, further research is needed to consider the level or intensity of involvement, different approaches and stages of participation in the health promotion intervention, as well as mediating factors such as gender, socio-cultural background or academic achievement, in a more systematic manner.

Participation by different stakeholders in participatory evaluation of health promotion: A literature review

Participatory evaluation has been increasingly used in health promotion (HP) and various forms of participatory evaluation have been put into practice. Simultaneously, the concept of participation has become more important for evaluation research in general, which is equally diverse and the subject of various discourses. This study addresses the issue of how the concept of participation has been established in HP evaluation practice. An analytical framework was developed, which served as a basis for a literature review, but can also be used as a general framework for analyzing and planning the scope of participation by various stakeholders within different phases of participatory evaluation. Three dimensions of participation, which refer to decision making (decision power, deliberation) and action processes are distinguished. The results show that only a few articles discussed participatory evaluation processes and participatory (evaluation) research was largely put forth by participatory (action) research in communities. The articles analyzed referred mostly to three stakeholder groups - evaluators, program staff and beneficiaries - and to participation processes in the initial evaluation phases. The application of the framework revealed that decision power seems to be held predominantly by program staff, evaluators seem to be more involved in action processes and beneficiaries in deliberation processes.

Conceptualizing lay participation in professional health care organizations

Lay participation in health care decision making lacks an adequate analysis from an organizational perspective. This article aims to develop conceptual devices to analyze policies and practices and the ways in which these could be further developed. By recapping established frameworks and drawing on theories of professional organizations, four participatory roles and their potential to adapt organizational decisions to internal requirements and external challenges are elaborated. While individual patient participation is widely acknowledged, there is still a lack of systematic approaches to the roles of significant others, patient groups, and the broader community and their implementation within health care organizations.

Selbsthilfegruppen und Gesundheitsförderung im Krankenhaus – eine entwicklungsfähige Allianz für Gesundheit

ZusammenfassungHintergrundGesundheitsförderung und Selbsthilfegruppen weisen gemeinsame Wurzeln und Entwicklungen auf. Untersucht wird die Frage, wie sich dieses Verhältnis in der Programmatik und Praxis des internationalen Netzwerks „Gesundheitsfördernder Krankenhäuser und Gesundheitsseinrichtungen“ (HPH) darstellt.Materialen und MethodenHerangezogen werden Grundsatzdokumente des HPH-Netzwerks, Dokumentationen von HPH-Konferenzen, eine internationale Befragung von HPH-Mitgliederorganisationen und eine gesonderte Befragung von HPH-Netzwerkkoordinatoren.ErgebnisseIn den Strategiepapieren von HPH sowie in Konferenzthemen ist der Stellenwert von Selbsthilfegruppen zwar peripher, aber die Alltagspraxis der Kooperation ist teilweise gut entwickelt und zwar dort, wo sie auf das Sichtbarmachen und die Stärkung von Selbsthilfegruppen als zusätzliche Ressource für Patienten abzielt.SchlussfolgerungVorgeschlagen wird eine umfassende Kooperationsstrategie mit sechs aufeinander aufbauenden Stufen. Hinweise auf notwendige Strukturbildungen lassen sich aus den Erfahrungen der Initiative für „Selbsthilfefreundlichkeit im Gesundheitswesen“ in Deutschland und Österreich gewinnen.AbstractBackgroundHealth promotion and self help (patient) groups share many goals. The article investigates how their relationship has been developed in concepts and practice of the international network “Health Promoting Hospitals and Health Care Services” (HPH).MethodsAnalysis of basic documents of the HPH-movement and conference documentations was complemented by data from an international survey of HPH-member organizations as well as a special survey of network coordinators.ResultsIn strategic papers of HPH and in the international conference discourse a referral to self help (patient) groups is scarce, yet everyday HPH-practice in various degrees seems to promote cooperation with self help (patient) groups to strengthen them as a complementary resource for patients.ConclusionFor developing cooperation between HPH and self help (patient) groups a comprehensive strategy of cooperation including six progressive steps is recommended. For implementation the initiatives for “Self help friendly health care” in Germany and Austria provide valuable experiences.

Gemeinschaftliche Selbsthilfe als Gesundheitsförderung pur

ZusammenfassungHintergrundGemeinschaftlicher Selbsthilfe werden große Gesundheitsförderungspotentiale zugeschrieben. Gleichzeitig besteht der Eindruck, dass es an einer systematischen Bezugnahme aufeinander und an gemeinsamer Praxis mangelt.ZielDer wechselseitigen Bezugnahme von Gesundheitsförderung und gemeinschaftlicher Selbsthilfe wird anhand der Strategien und Handlungsfelder der Gesundheitsförderung auf programmatischer Ebene sowie auf Praxisebene nachgegangen. Möglichkeiten, Voraussetzungen und Grenzen einer verstärkten Kooperation werden diskutiert.Material und MethodenDatengrundlage für die Dokumenten- und Literaturanalyse bilden Leitdokumente, Sammelpublikationen, Magazine, Tagungsunterlagen und schriftlich dokumentierte Projekte von Gesundheitsförderungsagenturen und Selbsthilfeorganisationen im deutschsprachigen Raum. Die Kategorisierung der wechselseitigen Bezugnahme erfolgt anhand der Strategien und Handlungsfelder der Gesundheitsförderung (3 × 5-Matrix).ErgebnisseProgrammatische Bezugnahmen und Hinweise auf gemeinsame Praxis wurden in neun der 15 Zellen der Matrix identifiziert, insbesondere im Bereich der individuellen Befähigung. Die Bezugnahme von Selbsthilfe auf Gesundheitsförderung ist stärker ausgeprägt als umgekehrt. Insgesamt überwiegen implizite Bezugnahmen.DiskussionDie identifizierten Überschneidungen zeigen die vielfältigen inhaltlichen Anschlussmöglichkeiten zwischen gemeinschaftlicher Selbsthilfe und Gesundheitsförderung auf. Besonders anschlussfähig scheint die aktuelle Health-Literacy-Diskussion und die Zusammenarbeit im Rahmen der Gesundheitsfördernden Krankenhäuser. Dabei sind die je eigenen Handlungslogiken beider Seiten zu berücksichtigen sowie Vermittlungsstrukturen und finanzielle Ressourcen bereitzustellen.AbstractBackgroundMutual self-help is said to have huge potentials for health promotion. Simultaneously there is an impression of a shortage of systematic mutual referencing and practice.ObjectivesThe mutual referencing of health promotion and mutual self-help is analysed on the goal-setting and practice levels. Potentials, prerequisites and limits of increased cooperation of health promotion initiatives and mutual self-help are discussed.Materials and methodsData sources of the document and literature analysis are policy papers, anthologies, magazines, conference documents and documented projects of health promotion agencies and self-help organizations in German-speaking countries. Categorization of the mutual referencing is guided by a 3 × 5 matrix of health promotion strategies and action areas.ResultsExplicit referencing at the goal-setting level and practice level was found in nine of 15 matrix cells, in particular in the area of enabling individuals. The referencing of self-help to health promotion is stronger than vice versa. Overall implicit references prevail.ConclusionsThe identified overlaps show the manifold connections as well as further potentials of cooperation between mutual self-help and health promotion. Particularly compatible seem the actual health-literacy discussion and cooperation in the context of health-promoting hospitals. Thereby the different logics of action on both sides have to be taken into account as well as the necessity for providing mediating structures and monetary resources.