Article type
Abstract
Background
Current medical guidelines in Germany have so far taken little account of aspects of sex, gender, and diversity, and they do not usually provide all the information that is needed for the development of evidence-based patient decision aids.
Objectives
The aim was to develop and pilot-test a concept for the development of guidelines and evidence-based patient decision aids considering sex, gender, and diversity.
Methods
Literature review: We reviewed method papers from national and international guideline organizations and conducted comprehensive literature searches. In an interdisciplinary research team, including patient representatives, we defined the dimensions of diversity used in our project.
Exploration: We conducted an online survey (249 scientific-medical societies) and semistructured interviews with people involved in guideline processes (11/2022–10/2023) to assess the process of selecting mandate holders, experiences, and attitudes regarding sex, gender, and diversity as well as the consideration of patients’ needs and preferences in guideline processes. Analyses included descriptive and content analyses.
Public consultation: The concept was published for public consultation in 12/2023 via OSF (https://osf.io/9yeku/).
Results
The survey (response rate 18%) and the interviews (n = 12) showed that sex, gender, and diversity have received little attention in the selection of mandate holders and guideline processes so far. The needs and preferences of the target group were not regularly assessed, and the involvement of patient representatives varies. Based on these results and the identified literature, we set up the first draft of the concept and revised it, taking into account the comments of the patient representatives.
The concept describes methods to extend the process for developing evidence-based guidelines to consider sex, gender, and diversity and patients’ needs and preferences as well as the content requirements of patient decision aids throughout the entire process. Additional materials, such as a checklist, toolkit, data extraction sheet, and template, for patient decision aids are provided.
Conclusions
We are currently reviewing the comments from the consultation phase. The pilot study with a guideline group is ongoing. After revision, the final concept will be made publicly accessible. In the long term, it may support guideline groups to improve knowledge transfer and promote health literacy as well as informed decisions.
Current medical guidelines in Germany have so far taken little account of aspects of sex, gender, and diversity, and they do not usually provide all the information that is needed for the development of evidence-based patient decision aids.
Objectives
The aim was to develop and pilot-test a concept for the development of guidelines and evidence-based patient decision aids considering sex, gender, and diversity.
Methods
Literature review: We reviewed method papers from national and international guideline organizations and conducted comprehensive literature searches. In an interdisciplinary research team, including patient representatives, we defined the dimensions of diversity used in our project.
Exploration: We conducted an online survey (249 scientific-medical societies) and semistructured interviews with people involved in guideline processes (11/2022–10/2023) to assess the process of selecting mandate holders, experiences, and attitudes regarding sex, gender, and diversity as well as the consideration of patients’ needs and preferences in guideline processes. Analyses included descriptive and content analyses.
Public consultation: The concept was published for public consultation in 12/2023 via OSF (https://osf.io/9yeku/).
Results
The survey (response rate 18%) and the interviews (n = 12) showed that sex, gender, and diversity have received little attention in the selection of mandate holders and guideline processes so far. The needs and preferences of the target group were not regularly assessed, and the involvement of patient representatives varies. Based on these results and the identified literature, we set up the first draft of the concept and revised it, taking into account the comments of the patient representatives.
The concept describes methods to extend the process for developing evidence-based guidelines to consider sex, gender, and diversity and patients’ needs and preferences as well as the content requirements of patient decision aids throughout the entire process. Additional materials, such as a checklist, toolkit, data extraction sheet, and template, for patient decision aids are provided.
Conclusions
We are currently reviewing the comments from the consultation phase. The pilot study with a guideline group is ongoing. After revision, the final concept will be made publicly accessible. In the long term, it may support guideline groups to improve knowledge transfer and promote health literacy as well as informed decisions.