An evidence-based framework on community-centred approaches for health: England, UK.

Community participation is a central concept for health promotion, covering a breadth of approaches, purposes and activities. This paper reports on a national knowledge translation project in England, UK, which resulted in a conceptual framework and typology of community-based approaches, published as national guidance. A key objective was to develop a conceptual framework linked to sources of evidence that could be used to support increased uptake of participatory methods across the health system. It was recognized that legitimacy of community participation was being undermined by a scattered evidence base, absence of a common terminology and low visibility of community practice. A scoping review, combined with stakeholder consultation, was undertaken and 168 review and conceptual publications were identified and a map produced. A 'family of community-centred approaches for health and wellbeing' was then produced as way of organizing the evidence and visually representing the range of intervention types. There are four main groups, with sub-categories: (i) strengthening communities, (ii) volunteer and peer roles, (iii) collaborations and partnerships and (iv) access to community resources. Each group is differentiated using key concepts and theoretical justifications around increasing equity, control and social connectedness. An open access bibliography is available to accompany the framework. The paper discusses the application of the family of community-centred approaches as a flexible planning tool for health promotion practice and its potential to be used as a framework for organizing and synthesizing evidence from a range of participatory methods.

An assessment of written patient information provided at the genetic clinic and relating to genetic testing in seven European countries.

The aim of this study was to assess the quality of written information for patients and families about genetic testing, from a range of European countries. Written information relating to genetic testing for five conditions was gathered from genetic departments across seven European countries. Written information for each condition from each country was randomly chosen for assessment. Fourteen key issues had been identified by a number of pre-existing tools (in particular the DISCERN-Genetics tool) as being important for inclusion when developing or assessing material relating to genetic testing. Fifty pieces in total were assessed for the inclusion or omission of key issues. Although the majority of information discussed issues relating to the condition including background and effect (n=48, 96%), treatment and management (n=37, 74%) and heredity and risk (n=49, 98%), only half the information discussed where to obtain additional information and support (n=25, 50%). Less than half the information discussed what happens after the test (n=15, 30%), patient rights (n=12, 24%) and shared decision making (n=12, 24). Benefits were more likely to be included (n=41, 82%) than any risks involved (n=24, 48%). The issue discussed least frequently was the possible psychological and social effects of genetic testing (n=9, 18%). Pre-written leaflets tended to provide a more comprehensive discussion of the issues surrounding genetic testing than personal letters did and should therefore routinely be available to patients alongside personal letters. Written information should include risks and limitations of testing as well as discussion of the psychological and social aspects of genetic testing.