We need to talk to those affected by a disease so that we understand what living with it is like and the individual challenges involved. Workshops, adboards or interviews are best for this. This requires proper preparation with a concept, project plan and patient collaboration agreements, including data protection, use and compliant remuneration.
Patient Partnership means not talking about, but talking with those affected
What’s more, we always pay attention to the special requirements of patients and relatives, for example when it comes to creating trustful and authentic surroundings in which sufferers feel comfortable, or when talking, we use patient-friendly language. Typical topics are pain points and needs, the impact of a disease on everyday life (burden of illness), the need for information in the various stages of the disease, management of therapy, disease and side-effects, as well as what is required of supportive care or new therapies.
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