All too often, important knowledge is lost on the conventional path from the first medical diagnosis to the cure of a disease - symptoms that have pointed to the respective disease are usually not discussed, and neither is appropriate follow-up care. An uninterrupted information chain, however, could be of great value to both patients and physicians, as well as to the pharmaceutical industry and other stakeholders within the medical field. The patient journey concept solves these problems in the most innovative way.
What's behind the term "Patient Journey" and "Patient Reported Outcomes"
The idea behind the model is to accompany the patient's journey visually and as completely as possible from the first signs to complete recovery and any recurrences.
Patient reported outcomes – also known as patient related outcomes - (PRO) - is the patient's documented disease journey and documentation of individual symptoms. It represents the counterpart to the inventory survey by physicians and nursing staff. The patient journey focuses not just on immediate and obvious symptoms, after-effects and side-effects of any medications and treatment results, but also on subjective perceptions.
Who benefits from patient reported outcomes?
Although the topics of real world data and big data in healthcare are still viewed with a healthy amount of skepticism - mainly for data protection reasons, but also for ethical concerns - they are seen as a real blessing in regard to a number of processes in healthcare. Above all, they are proving to provide a promising foundation for the sector’s continually advancing trend towards patient centricity which, in turn, focuses solely on the wellbeing of the patient. Ultimately, it is the patient themselves who benefits from the patient data he or she has collected.
Patient journeys are not a complete alternative to clinical patient studies, but they are increasingly proving to be a useful tool to complement them. Research teams benefit from PROs as do pharmaceutical companies and, last but not least, practicing and clinical physicians and nursing staff, health care authorities and health insurance companies.
Patient data or first-hand patient experience can, for example, provide useful information on the efficacy or side effects of a drug under development. This way, potential treatment successes can be better assessed - and costs saved.
Patient-generated data as a starting point for medical upscaling
Since patient data provides a direct view of certain aspects that are mostly not addressed in anonymized clinical studies, the patient journey has played a significant role in the reformation of healthcare management. The patient is at the center of it all, and all treatments are tailored specifically to them with pinpoint precision - whether in the initial stages, the final stages, or as a result of their illness.
The wider general public also benefits from both the personally and economically positive aspects of this revolutionary concept - for example, cost savings within the pharmaceutical industry or those made by health insurance companies may well result in financial relief for the individual. Lastly, the patient journey helps to better understand complex issues and to be able to incorporate the knowledge gained into future treatment practices.
The basic areas that patient reported outcomes are intended to cover include information on the following:
- Quality of life as it relates to health and well-being.
- Satisfaction with treatments, treating staff, and the health care system in general
- Physical, psychological and social situations and reductions
- Therapy and satisfaction with its results
- Pre- and aftercare
How can a constructive patient journey be implemented?
The foundation of every patient journey is the patient themselves or the patient cohort. Patient cohorts are groups of people who have been ill and observed over a longer period of time and who have similar symptoms or genetic similarities, for example.
The most significant step in a patient journey is the collection of relevant data. This is often done on the basis of a patient survey or/and observation. Special techniques such as the "thinking aloud" method are used here. The most important information here includes the patient's individual impressions and insights, as well as his or her feelings and behavior.
In the course of medical digitalization, complex and easy-to-use eHealth apps have surpassed traditional tried-and-tested patient questionnaires. The apps can be both general and specialized for a specific clinical picture. Many hospitals, for example, already provide their own apps that accompany patients throughout their entire patient journey. On the one hand, this strengthens the connection between patient and practitioner. On the other hand, it opens up new and significantly simplified communication channels.
What happens to the data collected?
The incoming flood of information is analyzed and then visualized, and the possibilities are essentially unlimited at this point. Both the course of the disease in chronological order and the individual treatment stations should appear in the graphical representation, with the central components of the patient journey being the details provided by the ill person. Placed in context alongside other facts, these data form the basis for the development of therapy approaches, which equally represent an elementary instance in the patient journey. The same applies to facts about aftercare and possible relapses and their triggers.
Digital patient journeys against the background of data protection
Within the framework of a patient journey, the main focus should be on the central needs of the patient. At the same time, the patient's interests with regard to data protection must not be left out of the equation. This can be difficult in the course of disclosing symptoms, diagnoses and, above all, personal feelings and wishes, and the requirements of all parties involved must be met. For this reason, concepts of anonymization and aggregation of data are used, with so-called federated networks also ensuring the spatial separation of data.
Conclusion: Patient Journeys can help to improve the healthcare system
In healthcare, there’s a clear and continuing trend towards digital health. The focus is on the patient and his or her individual needs, and complex and detailed documented patient journeys play a significant role in this development. By visualizing all the stages through which the patient passes, it’s possible to better understand the course of the disease and develop new therapeutic and research approaches. Additionally, the innovative patient journey can act as an effective tool to improve marketing strategies and thus prove to be extremely profitable for practices and clinics as well as for providers and all stakeholders in the healthcare sector.
Patient Monitors and
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