Cooperation

CODEX for Collaboration

Between Users and Health Professionals

In this codex, which is a summary of a longer and more detailed version, collaboration is a key concept. The relationship between users and health professionals is understood as a mutually respectful collaboration between two types of experts:

(1) the user, who is an expert in their experience of the disease, their own life, and their daily routines, and

(2) the health professional, who ideally has insight into both psychology and pedagogy as well as the most up-to-date professional knowledge.

 

Below are the main guidelines for health professionals and users.

 

For Health Professionals

✓ Equal, understandable, and personal communication, as well as active and appreciative listening.

✓ Ongoing alignment of expectations and assessment of the user’s resources and need for care.

✓ Focus on the “whole person,” where psychological, social, and physical elements are included. Pay attention to mental support and to stress, anxiety, and depression.

✓ Give the user the opportunity to talk about victories and obstacles in everyday life to help make visible—and support—the possibilities for achieving a better life.

✓ Care for and acknowledgment of the user’s situation and preferences, and possible involvement of the user’s family and network.

✓ Avoid demeaning and stigmatizing language; translate professional knowledge into everyday language and use wording that invites collaboration, reflection, and clarification.

✓ Present available digital tools, pumps, sensors, and apps, as well as their positive and negative aspects.

 

For Users

✓ As a user, try to present the clearest possible picture of your needs.

✓ Speak clearly and honestly about the “lived life” with diabetes, including the ups and downs, victories, and barriers to achieving desired changes.

✓ Be active, open, and curious, and ask questions or comment if communication is unclear.

✓ Suggest how relatives, friends, and others can be involved to achieve increased support for action.

 

Important Preconditions

✓ A confidential and safe “space” for the meeting should be planned well in advance, both for physical and online meetings.

✓ A shared understanding of the meeting’s themes, agenda, and decisions/agreements, based on active listening and input from both users and the professional.

✓ Collaboration with other experienced users (“peer-to-peer”) and user-experts ensures diversity in support and closeness in treatment.

✓ The healthcare system provides technological solutions and support, and technology is used thoughtfully—no user must be excluded due to technical, linguistic, or cognitive barriers.

✓ Collaboration with the individual user in deciding the balance between online and physical meetings—every user should have the right to a physical consultation with a health professional when desired.

✓ Support and development of user collaboration should be clearly written into the organization’s overall strategy, profile, and plans. This applies especially to the frameworks and educational opportunities provided for health professionals and for users.

 

The codex, which was developed jointly by a group of users, health professionals, and researchers, originated from the user-driven CODIAC 2 conference on a user-centred healthcare system, held at Steno Diabetes Center Copenhagen on 27–28 September 2024. The full version can be found here: 

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