Work process

Activity

Participants

Steps

Content

1

Study design & planning,

The co-creative process started with a research group being set up with representatives from various professions in the rheumatological team (rheumatologist, occupational therapist, physiotherapist, social counsellor) and a patient partner

Research group (researchers/ clinicians/patient partner)

The research group decided how to address the research question, which included to present the suggested plan to the patient organization to assess the relevance of the project for persons living with rheumatological diseases.

After approval of the patient organization, a preliminary advisory group of patients was formed, by advertising through the national patient organization and their regional branches

2

Study design & planning

Establishing patient advisory group by the patient organizations webpage, social media and e-mail to members in the organization living in the area. In addition, related organizations were contacted such as the association for young persons living with rheumatological diseases, to facilitate a broader sample with a wide range of experience in the reference group

Patient partner and patient advisory group

The advisory group of patients gained information about the aim of the study and the suggested role of the stakeholder advisory groups by obtaining written and oral information from the patient partner.

The patients preferred the patients and the professionals to have different advisory groups due to the topic

3

Study design & model development

Meeting with advisory group of patients

Patient partner, researcher/clinician and patient advisory group

A meeting including a brief introduction to the concept of sexual health, thereafter having the opportunity to discuss the aim of this study and give recommendations on if/how the study should continue.

The advisory group was positive towards the aim of the study and gave suggestions for important areas of living with rheumatological diseases and sexual health that should be considered in the model. The advisory group also opted to give additional responses and suggestions by e-mail.

4

Study design & model development

Research group work

Research group

Suggestions from the patient advisory group added to an explorative understanding of the topic, together with prior research in the field and

sharing of knowledge enabled the first version of the working model.

A first version of the working model

5

Model development

E-mail correspondence presenting the first version of the working model

Patient partner and patient advisory group

The first version of the working model was sent to the patients’ advisory group for responses and suggestions

Additional comments led to a revision by the research group of the working model (second version)

6

Study design & model development

Additional patients opted in and were included to participate in the project as advisory group participants, due to interest in the topic

Patient partner and patient advisory group

The additional patients were included in the patients’ advisory group and the first version of the working model was sent to the patients’ advisory group by e-mail for responses and suggestions

Additional comments led to a revision by the research group of the working model (third version)