Programme

Event overview: In addition to a presentation providing an overview of the creation and activities of the ESC Patient Forum, the discussion will be structured around the three main action priorities of the forum:  

• Women’s health: represented by Mary Galbraith (UK)
• What are the particular expectations raised by patients in this area?
• Inclusion of women in trials, undertreatment of women in STEMI, drugs recommended for women often not tested on women; different profiles of diseases affecting women vs men, under-investigation of conditions affecting women etc.
• Digital health:  represented by Axel Verstrael (Belgium)
• Opportunities offered by digital tools to engage in trials patients who, might not have had access to them. However, there are concerns about the difficulties sometimes faced by the elderly generation with the new digital tools.
• Emotional well-being: represented by Mattias Van Heetvelde (Belgium)
• How is it measured? Numerous validated measures; work undertaken by the patient forum with the ESC Guidelines committee to secure capture of these measures, which are now required by the FDA for clinical trials, and work to have measures included in the instruction tables.
• Patients are concerned about capturing QoL data and having QoL taken into account by industry.
  Patients want to have a “good life”.

Session recording