Periodic Reporting for period 1 - MyPath (Developing and implementing innovative Patient-Centred Care Pathways for cancer patients)
Reporting period: 2022-09-01 to 2023-08-31
Every year in Europe, more than 3.7 million people are diagnosed with cancer and about 1.9 million people die of cancer.
An essential question to ask ourselves is - “are patients with cancer receiving the best possible care?” This question can be answered from two perspectives: the biomedical anticancer therapy perspective and from a patient-centered perspective, covering psychological, physical, and social problems and needs. In MyPath, we will focus on improving the latter, patient-centered care (PCC), by developing a novel digital solution and implementing this solution into routine care at nine cancer centres across Europe using Implementation Science Methodology. The digital solution we are developing consists of digital patient-centered care pathways, custom-made for each patient, including real-time communication of symptoms; functions, and needs using our electronic patient-reported outcome and experience measures (ePROMs and ePREMs) system.
The MyPath project consists of three phases:
In phase 1 (years 1-2) the overall objectives are to develop the digital solution and its scientific content and ensure that the nine sites are ready to adopt the digital solution in their clinical outpatient oncology practice. To achieve these goals we are conducting a systematic scoping of the clinical sites informing us of the organizational clinical structures, as well as the competence and clinical skills among health care providers within patient-centered care. The results will inform us how to prepare clinicians for a complete integration of patient-centered care into their daily practice.
The contents of the ePROMs, ePREMs, and the care pathways in MyPath are developed based on the evidence from clinical studies and guidelines and by international experts within and outside the consortium. Iterations are performed involving ICT experts, designers, and programmers to ensure that the content and the user interface of the digital solution are according to the different stakeholders’ needs.
The digital solution, the software, must be installed securely at each sites’ ICT platform. It must also communicate with the electronic medical health record system (EMR). In phase one this is being set up at all nine sites.
In Phase 2 (years 3-4), we will run the implementation study to test whether the MyPath solution can be implemented in the nine cancer centers and explore if the solution is being used as intended. The digital solution and its content will be continuously assessed and improved throughout the implementation study.
In Phase 3 (year 5) the main objectives are to document, conclude, and give recommendations on how patient-centered care can be improved at local, national, and international levels.
An essential question to ask ourselves is - “are patients with cancer receiving the best possible care?” This question can be answered from two perspectives: the biomedical anticancer therapy perspective and from a patient-centered perspective, covering psychological, physical, and social problems and needs. In MyPath, we will focus on improving the latter, patient-centered care (PCC), by developing a novel digital solution and implementing this solution into routine care at nine cancer centres across Europe using Implementation Science Methodology. The digital solution we are developing consists of digital patient-centered care pathways, custom-made for each patient, including real-time communication of symptoms; functions, and needs using our electronic patient-reported outcome and experience measures (ePROMs and ePREMs) system.
The MyPath project consists of three phases:
In phase 1 (years 1-2) the overall objectives are to develop the digital solution and its scientific content and ensure that the nine sites are ready to adopt the digital solution in their clinical outpatient oncology practice. To achieve these goals we are conducting a systematic scoping of the clinical sites informing us of the organizational clinical structures, as well as the competence and clinical skills among health care providers within patient-centered care. The results will inform us how to prepare clinicians for a complete integration of patient-centered care into their daily practice.
The contents of the ePROMs, ePREMs, and the care pathways in MyPath are developed based on the evidence from clinical studies and guidelines and by international experts within and outside the consortium. Iterations are performed involving ICT experts, designers, and programmers to ensure that the content and the user interface of the digital solution are according to the different stakeholders’ needs.
The digital solution, the software, must be installed securely at each sites’ ICT platform. It must also communicate with the electronic medical health record system (EMR). In phase one this is being set up at all nine sites.
In Phase 2 (years 3-4), we will run the implementation study to test whether the MyPath solution can be implemented in the nine cancer centers and explore if the solution is being used as intended. The digital solution and its content will be continuously assessed and improved throughout the implementation study.
In Phase 3 (year 5) the main objectives are to document, conclude, and give recommendations on how patient-centered care can be improved at local, national, and international levels.
During the first year of the project, the content, structure, and interface of the digital MyPath solution have been developed iteratively between experts; clinicians, social- and implementation scientists, ICT experts, patients and families.
All potential aspects of using MyPath in clinical practice are analyzed in order to understand and optimize the development and implementation. This includes the planned processes of patients’ use of the ePROMs. How to present the ePROMs to the clinicians and how to structure the clinical consultation are being developed and tested at all sites. The structure and the content of the treatment plans are also in progress.
To validate these structural elements we have used pain, nutrition and emotional distress as demonstration symptoms and functions. Expert groups including clinicians from all sites and from all relevant professions have been established. They are involved in these development and iterative processes together with other stakeholders. During this summer and fall (2023), a demo of the digital solution has been developed, and feedback collected from all clinical sites as well as from external stakeholders. Together, these activities have informed us of the necessary structure (the digital architecture) and content of the first digital prototype of the MyPath solution. The MyPath software is now being programmed and will soon be ready for testing.
In addition, insight into current and proposed patient flow and patient-centered care practices have been collected through interviews, observations and workshops. Key clinicians treating the selected patient cohorts in each clinical site have been identified. These clinicians and other relevant stakeholders are through interviews informing and preparing us for the implementation study in years 3-4.
All potential aspects of using MyPath in clinical practice are analyzed in order to understand and optimize the development and implementation. This includes the planned processes of patients’ use of the ePROMs. How to present the ePROMs to the clinicians and how to structure the clinical consultation are being developed and tested at all sites. The structure and the content of the treatment plans are also in progress.
To validate these structural elements we have used pain, nutrition and emotional distress as demonstration symptoms and functions. Expert groups including clinicians from all sites and from all relevant professions have been established. They are involved in these development and iterative processes together with other stakeholders. During this summer and fall (2023), a demo of the digital solution has been developed, and feedback collected from all clinical sites as well as from external stakeholders. Together, these activities have informed us of the necessary structure (the digital architecture) and content of the first digital prototype of the MyPath solution. The MyPath software is now being programmed and will soon be ready for testing.
In addition, insight into current and proposed patient flow and patient-centered care practices have been collected through interviews, observations and workshops. Key clinicians treating the selected patient cohorts in each clinical site have been identified. These clinicians and other relevant stakeholders are through interviews informing and preparing us for the implementation study in years 3-4.
In MyPath, we are developing a digital solution for patient-centered care for use in any cancer patient cohort, independent of treatment intention. Patients with curative, life-prolonging, or palliative treatment intentions will be users of MyPath. The novelty of the MyPath solution is that it is more than a “free-standing app” for collecting the “patient voice” (PROMs). MyPath will be a complete (comprehensive) solution that includes symptom- and function assessment and classification, and individualized treatment plans based on these classifications. Patient involvement in the treatment- and care decisions is crucial. Shared decision-making is therefore an integrated part of the clinical consultations in MyPath. To successfully implement this novel digital solution into routine care, harmonization and adjustment between clinical practice and the end digital product are needed. This requires appropriate training of the clinical staff. Moreover, the solution needs to be tested continuously and adapted to local requirements and the patient population at each site. Through co-creation activities, we ensure that the solution fits the needs of the end-users.
The digital MyPath solution will be an integrated part of the EMRs at each site. Involvement at organisational levels at each site is crucial, including leaders at the top level, ICT departments, clinical leaders, patient organisations, etc. Already at this early stage of the project, it is shown that involvement is fundamental and can prevent barriers to adoption.
The digital MyPath solution will be an integrated part of the EMRs at each site. Involvement at organisational levels at each site is crucial, including leaders at the top level, ICT departments, clinical leaders, patient organisations, etc. Already at this early stage of the project, it is shown that involvement is fundamental and can prevent barriers to adoption.