This is the second volume of the Research Topic
Increasing Importance of Patients-generated Real World Data for Healthcare Policy Decisions about Medicinal Products, building on the success of the first volume which you can view
here.
The goal of this proposed Research Topic is to encourage researchers in this field from different jurisdictions to use this as a platform to share their experiences in conducting studies designed in a patient-centric approach using RWD, their encountered areas of concern during the process, and the anticipated impact of their studies.
This growing interest on leveraging the perspectives of patients and patient groups in research can be explored through approaches starting from study design, identifying clinical, economic and safety outcomes to generating rigorous data and relevant evidence from patients’ actual real-world experience. Results obtained will thus serve to provide more useful information to all stakeholders about the uses and expected outcomes of healthcare products.
The key areas for this topic will be design of study and sources of data. The design of the study should be built around patient-generated data so that results will add value to clinical research. These include defining patient subtypes, allowing more frequent and easier yet reliable measurements of outcomes, and creating more meaningful outcome data that can better reflect patient preferences and improvement in their quality of life.
Linkage and integration of patient-generated data is of utmost importance in this kind of research. When this data is linked to other RWD sources such as disease-specific registries, important insights into the patient’s clinical journey are thus possible. Collaborations across stakeholders including researchers, healthcare industry, government, patient organizations are therefore important to broaden the collection and use of this data in real-world evidence to advance policy development, patient welfare and enhance external validity of their results.
It is hoped that this proposed topic will attract manuscripts from leading experts across geographical and socioeconomical regions.
This is the second volume of the Research Topic
Increasing Importance of Patients-generated Real World Data for Healthcare Policy Decisions about Medicinal Products, building on the success of the first volume which you can view
here.
The goal of this proposed Research Topic is to encourage researchers in this field from different jurisdictions to use this as a platform to share their experiences in conducting studies designed in a patient-centric approach using RWD, their encountered areas of concern during the process, and the anticipated impact of their studies.
This growing interest on leveraging the perspectives of patients and patient groups in research can be explored through approaches starting from study design, identifying clinical, economic and safety outcomes to generating rigorous data and relevant evidence from patients’ actual real-world experience. Results obtained will thus serve to provide more useful information to all stakeholders about the uses and expected outcomes of healthcare products.
The key areas for this topic will be design of study and sources of data. The design of the study should be built around patient-generated data so that results will add value to clinical research. These include defining patient subtypes, allowing more frequent and easier yet reliable measurements of outcomes, and creating more meaningful outcome data that can better reflect patient preferences and improvement in their quality of life.
Linkage and integration of patient-generated data is of utmost importance in this kind of research. When this data is linked to other RWD sources such as disease-specific registries, important insights into the patient’s clinical journey are thus possible. Collaborations across stakeholders including researchers, healthcare industry, government, patient organizations are therefore important to broaden the collection and use of this data in real-world evidence to advance policy development, patient welfare and enhance external validity of their results.
It is hoped that this proposed topic will attract manuscripts from leading experts across geographical and socioeconomical regions.
