Table 1 Developed personas as description of the target group
From: User-centered design approach to visualize PROMs for molecular tumor boards
Field | Pathology | Systems Medicine | Systems Biology | Molecular Biology | Hematology/ Oncology | Human Genetics | Bioinformatics |
|---|---|---|---|---|---|---|---|
Quote | “I wish for a visualization format for Patient-Reported Outcomes (PROs) that effectively and efficiently supports me in discussing a patient case within the setting of the Molecular Tumor Board. It should help me identify changes in a patient’s progress early on and enable improved and more targeted therapy decisions.” | ||||||
Fictitious name | Dr. Gabriele Schmitt | Dr. Matthias Müller | Dr. Sabrina Weber | Dr. Malte Fischer | Dr. Stefan Becker | Dr. Sheng Wagner | Dr. Sebastian Meyer |
Position | Medical specialist | Scientific employee | Scientific employee | Scientific employee | Medical specialist | Medical specialist | Scientific employee |
Institute/Clinic | Institute of Pathology | Core Unit for Systems Medicine | Department for Systems Biology | Institute for Molecular Biology | Clinic for Hematology & Internal Oncology | Institute of Human Genetics | Institute for Bioinformatics |
Typical tasks | Clinically-oncologically relevant molecular tumor diagnostics; differential diagnostic distinction; investigation of changes in patients’ genetic information; genetic characterization of tumors; support for diagnostic assessment and therapeutic decision-making; statements about disease progression | Connection of system-oriented information with clinical patient data; simulation of pathological processes and the underlying mechanisms on the computer to non-invasively test intervention options for their effectiveness | Use of computer algorithms and mathematical models to collect, process, and analyze large amounts of clinical and biological data, and to build a profound (mechanistic) understanding of severe diseases; the models developed in this way can assist physicians in making faster decisions about the optimal (and personalized) patient treatment | Conducting molecular biological analyses; performing DNA sequencing; collecting and evaluating data; interpretation of research findings | Prevention and research of tumors; confirmation of diagnosis/monitoring of cancer/proof of treatment success via biopsy, imaging techniques, colonoscopy, histology and cytology, tumor markers; counseling of patients and relatives regarding possible measures | Differential diagnostic clarification, individual risk assessment, and human genetic counseling for genetically predisposed or associated tumor disposition; conducting, evaluating, and reporting on molecular genetic investigations; conducting analyses and reporting on the detection of somatic mutations in various tissues | Simulation of biochemical processes and biological data, such as the structure of DNA molecules or proteins on the screen; handling various bioinformatics databases; visualization of the structure of specific molecules or other compounds and application of these models in further procedures; development of software tools for data preparation, evaluation, and analysis |
Age | 50–59 years | 30–40 years | 30–40 years | 30–40 years | 50–59 years | 50–59 years | 30–45 years |
Language | German | ||||||
Professional experience | High | ||||||
MTB experience | High, frequent participation | ||||||
cBioPortal experience | Medium-High | ||||||
PROMs experience | None | None | None | None | Medium-High | None | None |
Goals | Primary: | ||||||
. Improved treatment decisions by incorporating the patient’s perspective | |||||||
. Improvement in the quality of care | |||||||
Secondary: | |||||||
. Support for shared decision-making or improved communication when discussing treatment results/outcomes with the patient (downstream) | |||||||
. Use of aggregated PROMs scores in clinical trials to inform patients about the benefits and risks of treatment | |||||||
Fears | . Poor integration in cBioPortal, cumbersome access | ||||||
. Poorly designed user interface (confusing, incomprehensible designations, etc.) | |||||||
. Incomplete or outdated information of PROMs | |||||||
