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Aim: The European Reference Networks (ERNs) provide clinicians and patients the opportunity to collaborate at EU level to improve diagnosis, care and treatment for people living with rare and complex conditions. However, building a partnership culture to systematically involve patients in ERN activities and decision-making structures is challenging, partly because the role of patient representatives and the value of this collaboration are not always understood. The objective of this project was to develop an evaluation framework to assess the impact of patient engagement in the ERNs and to provide evidence on the value of patient-clinician partnership. Methods: The evaluation was developed by EURORDIS and patient representatives involved in the ERNs (ePAG advocates) through a participatory and iterative process. The work was organised in three different phases: (1) clarify roles and identify common goals for ePAG advocates’ engagement in the ERNs; (2) define a set of measures; and (3) test the measures in three different ePAGs (European Patient Advocacy Groups). Results: The project allowed developing a common understanding among ePAG advocates of their role and goals in the ERNs and defining a patient-driven evaluation framework to assess their level of engagement in the ERNs’ activities and how effectively they were working to fulfil their role. Conclusion: Engaging with ERN clinicians to refine the framework would probably render it more relevant to the reality and priorities of the specific ERNs and more valuable as a tool to build a strong partnership culture. Such an evaluation framework could be integrated into the ERNs’ quality improvement system to ensure that the networks’ activities are driven by and remain responsive to patients’ needs.

This book is intended to be a beginner's guide that will provide a mental framework for more advanced topics. Reading this is enough for you to comprehend ECG readings, but you need to know as much as you can so that you can provide the best care.

A comic novel of life, love and the law in a fictitious town in western Minnesota in 1926.

Martin Blindheim gir i denne boken en oversikt over samtlige malte treskulpturer i romansk stil i norske stavkirker fra middelalderen, med kommentarer om historikk, teknikk og tidligere studier. Boken er rikt illustrert med fotografier, i hovedsak i svart/hvitt. Med noter, bibliografiog register. Eng. 160 s, ill., ib., kvartformat. 1998.