OBJECTIVES: Increasingly, patients become active participants in making decisions on their therapy. A survey was conducted to understand the experience and expectations of patient organizations (POs) with patient reported outcomes (PRO) as they are measured today. METHODS: An online survey was conducted in English language throughout May 2014 among 40 participants at a global cross disease patient forum to prepare a discussion of the relevance and usefulness of patient reported outcomes from the patient perspective. The participants represented a broad range of disease specific and disease independent patient organizations from various countries including USA, European countries, Asia, Latina America, Middle East and Australia. RESULTS: Current PROs were perceived as useful but not optimal for informing patients in making their own therapy decisions. All of 9 typical PRO domains were considered important (between 3.9 and 4.7 on a 5 point scale) with the most important being symptoms (4.6±0.89), Physical Function (4.65±0.59) and psychological well-being (4.7±0.47). The participants thought that PROs should be part of all studies throughout the entire life cycle of products including evidence for clinical research, reimbursement decisions, listing decisions, health technology assessment (HTA) or comparative effectiveness (CER) studies (all between 4.25 and 4.6 on a 5-point scale). Increasingly, POs develop their own instruments to elicit PROs from the patient perspective and as patient based evidence. CONCLUSIONS: The concept of patient reported outcomes is good in principle but more is needed for integrating additional aspects which are relevant for the patients themselves to understand the full impact and consequences of the therapy. Patient reported outcomes are a key endpoints from the patient perspective and should be elicited throughout the entire development and marketing cycle of products.