TY - JOUR T1 - Dear doctor, please know that you do not know until I have told you JF - BMJ Evidence-Based Medicine JO - BMJ EBM SP - 67 LP - 68 DO - 10.1136/bmjebm-2021-111886 VL - 27 IS - 2 AU - Arwen H. Pieterse Y1 - 2022/04/01 UR - http://ebm.bmj.com/content/27/2/67.abstract N2 - I have spent 15 years investigating to what extent doctors and patients make treatment decisions together. It has always been important to me as a researcher to be as objective as possible. I now realise that this attempt led me to disregard my personal experiences. I was 13 when I was diagnosed with psoriatic arthritis and have now over 30 years of experience with the disease and the role of chronic patient. Being a patient has become a separate and lonely part of my identity. Separate, because as a person with the disease, I am me and also a patient. Lonely, because I do not know how to genuinely share this experience with others. I know what it can be like not to tell everything, not to loved ones or not to doctors—because it seems unimportant, because it is too personal or because I do not expect others to understand.As a patient, I am dependent on the doctor’s knowledge and the doctor’s access to treatments. The doctor also largely determines my view of which policy is possible and desirable. The doctor may—consciously or unconsciously—formulate information slightly differently, give slightly different information or not give information at all because it does not seem relevant enough to share with … ER -