Research Topic

Increasing Importance of Patients-generated Real World Data for Healthcare Policy Decisions about Medicinal Products

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About this Research Topic

Traditionally, evidence generated from randomized clinical trials and observational studies has long been used to build the foundation for decision making by clinicians, patients and policy makers about healthcare. In recent years, the progress in electronic technology has led to an increasing interest in ...

Traditionally, evidence generated from randomized clinical trials and observational studies has long been used to build the foundation for decision making by clinicians, patients and policy makers about healthcare. In recent years, the progress in electronic technology has led to an increasing interest in real-world data (RWD) to bridge the gaps from the conventional sources. However, the focus of real-world evidence (RWE) generation using RWD has usually been around endpoints such as effectiveness and safety outcomes.

In order to provide a more holistic view on patient’s well-being in situations such as oncology and rare diseases, there is a growing and justified need for RWE that capture the patient’s preference in terms of financial burden and tolerability. In this respect, there is a recent increasing use of patient-generated data for healthcare policy decisions, and integrating this data with other real-world data sources has become an area of focus for research. It is expected that decision-making will increasingly depend on data collected directly from patients in the framework of routine healthcare. Data sources can include, but not limited to, electronic patient databases, disease registries, insurance reimbursement records and direct patient surveys. Results from this type of patient-centric research can thus serve as closer reflections of the reality due to the incorporation of patient’s real world experiences with the healthcare products and services that they have consumed.

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.

We welcome submissions including Original Research, Review Articles and an array of Frontiers article types focusing on 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. The linkage and integration of patient-generated data is of utmost importance and in combination with other RWD sources such as disease-specific registries, this provides a significant insight into the patient’s clinical journey. 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.


Keywords: Patient centric research, real world data, real world evidence, policy making, study design


Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.

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