The care management of patients with chronic and especially rare diseases is very complex. Patients and care providers often come up against the limits of the sectors. In order to have an overview of diagnostics, therapy and care, a system competence is required that often overwhelms the patients. This often leads to underuse, overuse or misuse of care.
The concept of patient guides fills this gap: they support people in need of help individually and specifically in their respective life situation by means of case and care management. There are now more than 45 patient pilots projects throughout Germany, supporting more than 75,000 people with complex life situations in various indications. On October 20, 2022, they met for the first time as part of the"Patient Guides Day"in Berlin to exchange ideas, network and discuss how the path to standard care can succeed.
Prof. Dr. Annette Grüters-Kieslich, Chairwoman of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases was happy to accept the invitation of the German Muscular Dystrophy Society (DGM), the Stiftung Deutsche Schlaganfall-Hilfe, the German Society for Care and Case Management (DGCC) and the Federal Managed Care Association (BMC) and outlined the importance of pilots from the perspective of rare diseases in a lecture to around 150 guests from the healthcare sector.
For the renowned pediatrician, one thing is certain: "The starting point for all considerations must be the question: How does each patient get the best possible individual care?" In this context, Professor Grüters-Kieslich referred to the Nobel Peace Prize winner and cardiologist Bernard Lown, who noted in his work `The Lost Art of Healing': "Some of the most challenging medical problems I have encountered could be solved simply by the information the patient provided." Indeed, proper listening is central to good patient care, Grüters-Kieslich said. You can often get far more information from what patients tell you than from lab and test results, she added. She emphasized that personal patient care is a multiprofessional and interdisciplinary task that must be shared among several shoulders. This is where the guides come into play, whom Prof. Grüters-Kieslich describes as important "caretakers". Contrary to what the term "pilot" might suggest, they are not supposed to direct and steer patients, but rather to accompany them and open up paths for them.
In this context, the chairwoman of the Eva Luise and Horst Köhler Foundation referred to the Innovation Fund project TRANSLATE-NAMSE, in which coordinated cooperation between centers for rare diseases significantly accelerated diagnosis. Part of the coordination, in addition to case conferences and structured treatment paths, was the use of guides. Prof. Grüters-Kieslich emphasized that the high satisfaction of patients who were accompanied by pilots was particularly impressive: "Just knowing that there are people who care about me makes a real difference for the patients." She appealed to all those responsible to now vigorously implement the transfer of the project contents of TRANSLATE-NAMSE into standard care as recommended by the Federal Joint Committee in April 2022, because patients do not have time: "Every day, children and adults die in Germany because they have not received the care they need in time. This cannot and must not happen."