Aim and background
The idea of user involvement is current fashion and a buzzword in the fields of health promotion, prevention, research and care – also in the area of diabetes. Although many different concepts and names exist (co-determination, shared decision-making, patient and public involvement, co-design, participatory research etc.), they are all concerned with giving users a say in processes that are important to their own lives. But what do we know about user involvement - do these approaches make the processes and products more effective and more cultural embedded, and how strong is the evidence?
The overall aim of “Copenhagen Diabetes Consensus (CODIAC) - User Involvement in Diabetes Care and Prevention” is to summarize, communicate, and further develop the existing international, research-based knowledge about the value and impact of a user-involving approach in three different fields:
The conference is being planned as a hybrid event, where a number of attendees will be invited to interact in person at a venue in Copenhagen, while another group of attendees are expected to join the event online from their office or home. A total number of 110 participants have been selected and invited to join the conference.
The available international knowledge will be summarized by three researcher panels representing the three different fields listed above and will be presented and discussed at the consensus conference in Copenhagen. A fourth panel – a user panel – will be preparing various inputs for the discussion and will be engaging with researchers and health care professionals during the conference. In this way, the conference topic – user involvement – will also be an important and integrated component of the processes taking place at the conference.
The work leading to The Consensus Conference in Copenhagen is structured by four panels that will summarize the value and impact of user involvement through a systematic mapping of relevant scientific literature. The Danish Diabetes Knowledge Center has had the responsibility for the methodological design of the systematic mapping in accordance with international standards.
Systematic analyzing of the scientific literature has occurred in three panels of researchers (diabetes care, prevention and research) addressing the following questions among others:
- What is the international research-based evidence for the value and impact of user involvement, in terms of metabolic, quality of life, satisfaction and social measures and other relevant parameters?
- Which methods and concepts have demonstrated potential for future work and development?
- What are significant gaps in current knowledge, and how can they be addressed in future research projects?
- What recommendations and suggestions should be made for future professional work and areas for development?
The user panel will be preparing various inputs for the discussion at the conference, involving users’ views of the fundamental conditions, potential, and pitfalls of user involvement. This includes professional skills needed to support individuals with diabetes, roles and attitudes of researchers in user-involvement projects etc.
The Group Concept Mapping (GCM) method, which is facilitated by the Danish Diabetes Knowledge Center, has involved researchers, user and health professionals in defining the most important elements of user involvement as well as the main barriers for the implementation. This product will also be an important input to the discussions at the conference.
Based on the presentations and discussions these following products are expected to be the outcome of the conference:
- A white paper – Copenhagen Diabetes User-Involvement Charter (CODUIC). This publication will comprise recommendations for future user-involvement work within diabetes care, prevention, and research based on the scientific evidence, as well as an overview of priority areas for future development;
- Articles from each researcher panel, co-authored by panel members and published in relevant journals;
- ·A scoping review describing and categorizing the body of evidence about user involvement in the areas of diabetes care, prevention and research
- A plan for next steps after the conference, such as new projects to fill out gaps identifies, a potential next international event etc.