Those who live or have experienced an addiction have much more than a story to tell: they have knowledge, criteria and proposals to improve research and care. RIAPAd wants this knowledge to occupy a place at the same table as that of researchers and clinical professionals. With initiatives such as Toasting with Water, we want to open that conversation and define together what needs we must address and where to direct our efforts.
This shift involves moving from “experiential” patient-centered participation to expert patient recognition. Patients are often invited primarily to tell their story, focusing on the most difficult moments in their journey. While the personal story has value, its presentation should not seek emotional impact through a sensational treatment of suffering.
On the other hand, we want their participation to also allow them to share their opinion, analyse problems and make proposals on a specific topic related to addictions. The expert patient brings knowledge built through their experience, treatment and contact with other patients, relatives and professionals. From this perspective, they can identify barriers, explain needs and point out aspects that may go unnoticed from consultation or research. Their contribution deserves their own space in conversation and decisions.
Taking for granted what patients need can take us away from the questions that really matter. Too often, professionals and researchers have defined priorities without asking them directly or counting them on them in decisions. RIAPAd wants to change this way of working: to sit down at the same table, as experts with complementary knowledge, to identify needs, formulate questions and guide projects together. Incorporating the perspectives of patients, researchers and clinicians from the beginning will allow us to move towards research that is more precise, better targeted and connected to people’s reality.
For this reason, we invite all entities and associations that want to collaborate with RIAPAd to join this shared work. We want to listen to their needs, learn about their proposals and collect the diversity of their perspectives. We also want to give space to their voice and contribute to disseminating it through initiatives such as Toasting with Water. The invitation is to build together research and dissemination in which all these contributions have a place.
