Patients & Relatives
11. October 2021 2022-05-31 13:51Patients & Relatives
User Involvement of Patients & Relatives
The Research Unit at The Danish Hospital for Rheumatic Diseases has for several years involved patients with inflammatory arthritis as actors in connection with development and research projects. Involvement of patients has taken place as a natural development of and based on practical experience.
PATIENTS ARE INVOLVED AS REPRESENTATIVES IN QUALITY ASSURANCE PROJECTS, RESEARCH PROJECTS AND IN THE DEVELOPMENT OF EDUCATIONAL PROGRAMMES.
The starting point for the involvement of patients was a study in 2011 of patients’ experience of participating in research projects. This study has led to the continuous dissemination of information about the progress and results of projects to patients involved in research.
The User Council based at the research department was established in 2013, with the participation of eight patients with rheumatoid arthritis, psoriatic arthritis or spinal arthritis.
The council consists of a group of professionals from the research unit along with patients associated with the hospital with different diagnoses, ages and genders.
The group meets three times a year to engage in dialogue on various topics and issues in relation to local research. Patients have the opportunity to give their perspective on overall topics. They can also participate in more specific tasks, such as participating in individual projects, reading and commenting on, e.g., questionnaires, teaching and information materials, reports, etc.
Aim
The aim of involving patients in research is to strengthen the dialogue and collaboration with patients and to involve patients’ views, needs, experiences and expectations in the planning, organization, implementation and dissemination of research.
Tasks
- Advisory function for the Research Unit.
- Contribute ideas to upcoming research projects.
- Contribute ideas in relation to where, when and how the Research Unit can include the perspective of patients and relatives, when research projects are planned and organized.
- Discuss what creates good, coherent patient processes in research projects, including communication and collaboration between patients and healthcare professionals.
- Discuss results from research projects and recommend areas to be followed up.
- Contribute to the preparation of the research unit’s information materials for patients and relatives.
- Participate in the planning of theme meetings for patients and citizens, partners, etc., where the focus is on the user angle in the research.
The researchers want to maintain and develop the collaboration with patients and, where possible, also with relatives.
Good ideas – would you like to hear more – or join the Research Users’ Council?
If you have suggestions for topics that the research unit’s User Council can deal with, are you interested in hearing more, or if you want to participate as a patient representative, you can contact:
Senior Project Manager Ninna Hoegh:
NOTE: The Danish Centre for Expertise in Rheumatology final form of user involvement is under development and thus not yet determined. At the moment, we are working in the establishment period up to 2030 with inspiration from both the Research Users’ Council, The Danish Hospital for Rheumatic Diseases Users’ Council and finally with inspiration from activities and workshops in The Danish Rheumatism Association.
In addition, patient/relative representatives will be included in the centre’s advisory board. The advisory board will also include the user perspective of the other stakeholders.
