The patient’s journey through all phases in life
Patient journeys are a way to improve care by patient involvement.
The relationship between a patient and a healthcare provider has changed over the last decade enormously.
In the area of rare diseases, often the patient knows more about their condition than the doctor who is treating them, and this is precisely not what the patient is looking for.
Patients, and their families, have to deal with a lot of challenges during their healthcare journey. This starts with the medical diagnosis, treatment and next steps. The patient journey is marked by uncertainty, no effective medical treatments and many unanswered questions.
The reason that this journey is so difficult, is because there is little knowledge regarding rare diseases. Despite there being approximately 7000 rare diseases identified worldwide, medical professionals may only see a few patients with a rare disease during their entire career.
Although patients are involved in a number of successful initiatives, such as the development of clinical guidelines, integrating the patient’s experiences and their needs into the development of healthcare services has generally been less successful. To improve care for patients with rare diseases, we must collect the available knowledge and experience not only from the medical experts but also from the patients. Communication between patients and doctors particularly needs to be greatly improved.
The single and most important aspect in assessing the quality of healthcare is patient satisfaction and their experiences with medical professionals. This data can even be used to predict survival rates.
Meeting the patient needs and to improve the quality of services in a better way is achieved by patient involvement in the design, evaluation and designation of healthcare services.
Since March 2017 the European Reference Networks (ERN’s) have been announced with the main goal to connect European experts in order to gather their collective knowledge and expertise. The data and information collected can then be accessed by patients worldwide.
The ERN Genturis (genetic tumour risk syndromes) started with a visual representation to share their knowledge and experience by means of a ‘Patient Journey’ (PJ).
The PJ collects the common needs of a patient by mapping their needs across the series of stages of the PJ.
The PJ is intended to connect expert guidelines, medical interventions, screening and treatments. The PJ not only pays attention to the medical aspects but also to the psychological aspects.
PJ’s are built for each disease and describes the applicable stages of this particular disease. Each stage covers the clinical presentation, the patient’s challenges, needs and their objective to improve the care. When the PJ is finished this is reviewed by patients and professional experts.
By using graphics, patients and healthcare providers can discuss the personal needs of a patient paying attention at the same time to the expertise of both patient and professional leads.
The objective remains: improving care for patients with a particular rare disease.
A PJ encourages experts to use national guidelines and to identify the need for evidence-based European guidelines that should result in equal care to every rare disease patient.
A PJ is a personal testimony that shows the patient’s needs by means of a graphical representation and a table holding the details. The PJ is intended to show the objectives for both patients and healthcare providers.
Healthcare providers can use the PJ to explain to new patients the clinical roadmap. Patients can use the PJ to determine specific needs within the roadmap.
A PJ can be developed in several ways. One way is to develop surveys and send these to patients and families. In this case great care must be given to the privacy of the medical data, consents and utmost confidentiality. This, however, is a time-consuming option.
Another approach is to compose the PJ based on personal experiences of, for instance, someone who has experienced a number of cases. Data can be verified, for example, at a workshop during which new experience are shared. The verification with the healthcare professionals can be performed in parallel with the verification by patients.
We have developed the CMTC ‘Patient Journey’ in collaboration for the European organization for rare diseases Eurordis.
The documents below are currently only available in English.