GHGA is conducting focus groups with patients and affected persons to set up a website for patient communication. The call for participation created great resonance among interested persons.
GHGA involves patients, people affected by cancer or rare diseases as well as interested persons in the development of a website for patient communication. The focus groups aim to explore their communication needs regarding the topic of “Sharing human genetic data for secondary research”.
The call for participation ended on 28 February and received great resonance among potential participants. The selection of candidates is currently underway. GHGA aims to ensure the greatest possible diversity among the candidates in order to capture a wide spectrum of expertise and opinions. Selection criteria include the extent of personal experience with illness, gender, age, level of education and ethnicity. The discussions are planned to be conducted in upcoming May.
The results of the discussions will directly inform the development of the website. Furthermore, the patient communication will be strategically aligned to the insights.