“Patient Journeys”: improving care by patient involvement
“I will not be ashamed to say ‘I don’t know’, nor will I fail to call in my colleagues…”. For centuries this quotation from the Hippocratic oath, has been taken by medical doctors. But what if there are no other healthcare professionals to call in, and the person with the most experience of the disease is sitting right in front of you: ‘your patient’. This scenario is uncomfortably common for patients living with a rare disease when seeking out health care.
They are fraught by many hurdles along their health care pathway. From diagnosis to treatment and follow-up, their healthcare pathway is defined by a fog of uncertainties, lack of effective treatments and a multitude of dead-ends. This is the prevailing situation for many because for rare diseases expertise is limited and knowledge is scarce. Currently different initiatives to involve patients in developing clinical guidelines have been taken, however there is no common method that successfully integrates their experience and needs of living with a rare disease into development of healthcare services.