[Reliable health information for patients with rare diseases : Quality demands defined by the National Action Plan and how they are put into practice]. / Verlässliche Gesundheitsinformationen zu seltenen Erkrankungen : Die Anforderungen des Nationalen Aktionsplans und deren praktische Umsetzung.

Information for patients with rare diseases has to adhere to strict quality criteria in order to support individual treatment decisions or coping strategies. However, developers are facing specific challenges: For example, the evidence is often insufficient or of very low quality. In the context of the National Action League for People with Rare Diseases (NAMSE), criteria have been developed that assure high-quality information on rare diseases. Core criteria comprise the involvement of patients or their advocates in all stages of the development process, the systematic search and assessment of the evidence, systematic collection of patient experience, transparency in terms of people involved and funding, and nondirective and neutral formulation of content and documentation of the process. In a joint project between the Alliance for Chronic Rare Diseases (ACHSE e. V.) and the German Agency for Quality in Medicine (ÄZQ), ten short information leaflets on different rare diseases have been developed in the past three years, conceived to show the applicability of these criteria. First experiences with this format show that the criteria are adaptive to a broad range of diverse rare diseases and settings. Involving patients and their advocates throughout the whole development process - from prioritization to development of methods and provision of patient experience and coping strategies - is crucial. Insufficient evidence remains a challenge. The examples show that in the absence of proven findings, information that matters to patients and reflects this uncertainty is feasible.

[Patient guidelines in oncology: objectives, procedures and first experiences with this format]. / Patientenleitlinien in der Onkologie: Zielsetzung, Vorgehen und erste Erfahrungen mit dem Format.

For several years patient versions of guidelines have become mandatory in the German Guidelines Program in Oncology (GGPO). Based on the methodology that has been developed for the German National Disease Management Guidelines Program, patient versions of guidelines translate the recommendations of clinical practice guideline into plain language and provide information about the harms and benefits of the interventions being addressed in the guideline. They are developed by a group of guideline authors (experts as well as patients), they are consensus-based and aim to create transparency in recommendations for physicians and their rationales. An automated analysis of readability shows that patient versions of guidelines are specific to the target group of educated lay people. Moreover, the responses to a reader feedback questionnaire indicate that comprehensibility, level of detail and depth of information are considered highly relevant and positive by users. Thus, patient versions of guidelines meet the needs of a specific target group. Nevertheless, the development of other formats for readers with low levels of health literacy or cognitive competencies is desirable. Currently it remains unclear if these simplified formats are able to reflect the complexity of high quality clinical practice guidelines.

[Short information leaflets for patients - a service offered to physicians: Early implementation experiences]. / Kurzinformationen für Patienten (KiP) als Service-Angebot für Ärztinnen und Ärzte - erste Erfahrungen mit der Implementierung.

Since 2010, the German Agency for Quality in Medicine has developed so-called short information leaflets for patients that are specifically designed for use in doctor-patient encounters. Physicians, patient representatives and communication specialists were involved in the development of this format. Their implementation aims at enhancing awareness and dissemination of these leaflets amongst the members of the self-governing bodies and other multipliers (like medical specialty societies, patient organisations, other bodies and institutions of the healthcare system). This paper describes the first implementation experiences on the basis of internally collected data on the involvement of multipliers, availability and assessment of their relevance. A first analysis shows that the short information leaflets are broadly available amongst the self-governing bodies and that they are considered to be of high relevance. Due to the direct involvement of the members of specialty societies and patient organisations and other experts, short information leaflets are also gaining acceptance outside the self-governing system. This is emphasised by the rising number of requests to reprint or cite or use the leaflets. Consistency with evidence-based treatment recommendations promotes acceptance of these leaflets among physicians.