[Advancing standards for the development of evidence-based health information for consumers: Needs and priorities among members of the Network for Evidence-based Medicine]

Abstract

Background: The Good Practice Guidelines for health information, Good Health Information Austria and Guideline Evidence-based Health Information are established resources for developing evidence-based health information in the German-speaking regions. The aim of this project was to capture challenges in applying these standards in practice, identify gaps and development needs and gain insights for their further development.

Methods: In December 2020, members of the working group for patient information and involvement of the Network for Evidence-based Medicine were invited to share their experiences and needs in applying German standards for evidence-based health information through an online survey focussing on open questions (part 1: needs assessment). The feedback was analysed using qualitative content analysis and presented in a workshop at the EbM Congress 2021 with the goal of specifying the feedback from the needs assessment and discussing ideas for the further development of the standards (part 2: specification). In the final step, a second survey was conducted in February 2023 to prioritize the identified topics by the working group members (part 3: prioritization). The results were analysed descriptively.

Results: Among the 41 participants, only 23% considered the standards to be sufficient, and only 55% found their application in the development of information to be easy or rather easy. The needs assessment and workshop (n=46) helped to identify various areas of action. With regard to the application of the standards, the following challenges were identified: lack of user orientation, content gaps, methods and risk communication. Gaps in the standards were identified regarding formats, content, and the connection to healthcare provision. For the advancement of the standards ideas for additional content, stakeholder involvement, and improvement of the usability of the standards were identified. In the prioritization survey, the topic areas, "presenting benefits and harms" and "content beyond treatments (in particular, diagnostics and prognosis)" were considered to be the most important (n=36).

Discussion: Among members of the working group for patient information and involvement of the German Network for Evidence-based Medicine, a high demand has been identified for the further development of standards for creating evidence-based health information. In addition to content development, the integration of existing documents and tools should also be considered, including products issued by other institutions. The success of advancing the standards also depends on improving their applicability - for example through an attractive online platform. The results are limited by the sample which only included members of the EbM Network's patient information and participation working group and a limited response rate.

Conclusions: The needs assessment showed that the currently established standards and recommendations for the development of evidence-based health information in the German-speaking regions represent important cornerstones but need to be expanded to answer more practice-oriented questions. The challenges and proposed solutions stated by the participants can help further develop the standards. The prioritization can be used to set priorities for the development of the standards, guide the order of possible work packages and allocate resources.

Keywords: Bedarfsanalyse; Befragung; Decision aids; Entscheidungshilfen; Evidence-based health information; Evidenzbasierte Gesundheitsinformation; Implementation; Implementierung; Needs assessment; Priorisierung; Priority setting; Survey.