Patient-centred standardization in interstitial cystitis/bladder pain syndrome—a PLEA

Standardization has an impact on all links in the healthcare chain and directly affects patients with regard to diagnosis, treatment, eligibility for reimbursement, social benefits and care. Furthermore, patients are also affected if research goes down inappropriate pathways due to inaccurate terminology and definitions. Complex healthcare coding and electronic medical record systems and global reliance on the internet and search machines mean that new terminology or changes now need in some way to be designed to last or to be updated in a way that will cause least disruption, while still allowing for evolution, since changes have far more ramifications today than they ever did in the past. Official recognition of a condition is vital, so coding must be correct and uniform across all authorities. Potential problems must be anticipated at an early stage in the process. In order to achieve global consensus, stakeholders from all parts of the world need to communicate and collaborate with all viewpoints taken into consideration. Patients and their advocacy groups should be involved in standardization processes to ensure that all aspects of a condition are covered, that no patients or symptoms are excluded and that there is no adverse impact on the patient in practical terms following implementation. The trend today is for patients to be more involved in healthcare and decision-making. We must ensure that standardisation and guidelines do not get left behind in this process of development either now or in the future. However, it is necessary to find some way of training patient representatives to enable them to participate fully in standardization and guidelines and also to encourage them to do so.