When you think of medical research, you might picture clinical trials that involve carefully controlled experiments in a laboratory setting. While clinical trials are an important part of medical research, they aren't the only source of patient-driven insights.
Real-world data specifically refers to health data collected from sources outside of clinical trials, like insurance claims, disease registries, and EHRs. This can provide insights into how treatments work in the real world.
EHRs are electronic health records that contain information on patient demographics and medical history.
Insurance claims databases contain information on medical services provided to patients, including procedures, medications, and diagnostic tests.
Disease registries are databases that contain information on patients with a particular disease or condition.
Clinical trial data is collected through carefully designed experiments. These typically involve a small, controlled group of patients who are randomized to receive a treatment or a placebo.
In contrast, real-world data is collected from a much larger and more diverse patient population, including patients with multiple medical conditions who may be taking several medications. Real-world data reflects the complexity of healthcare delivery, which impacts treatment outcomes.
One of the primary ways real-world data can be enriched is through the use of surveys, also known as patient-reported outcomes (PROs).
Real-world data is used to identify which treatments are most effective for a particular patient population, monitor the safety of medications over time, and evaluate the effectiveness of preventive interventions such as vaccines.
These datasets can used to identify trends in disease incidence, treatment utilization, and healthcare costs.
If you're considering participating in a real-world evidence study or observational trial, you may be wondering why researchers want you to complete surveys about your health.
These surveys are an important tool for collecting patient-reported outcomes, or PROs, which provide information on treatment effectiveness, patient satisfaction, and quality of life.
Patient-reported outcomes, or PROs, are measures of a patient's health status that are reported directly by the patient, rather than by a healthcare provider. There are many different types of PRO measures, including quality of life measures, symptom scales, and functional status measures.
Quality of life measures assess a patient's overall well-being, including physical, emotional, and social functioning.
Symptom scales measure the severity and frequency of specific symptoms, such as pain or nausea.
Functional status measures assess a patient's ability to perform daily activities, such as walking or climbing stairs.
Clinical outcomes are measures of health status that are based on objective medical tests or assessments, such as blood tests or imaging studies. PROs, on the other hand, are based on the patient's perceptions and experiences.
For example, a clinical outcome might be a measure of blood sugar control in patients with diabetes, while a PRO might be a measure of the patient's ability to manage their diabetes on a daily basis.
It’s important to respond to PRO surveys as accurately as possible so researchers can identify trends and solutions for others experiencing similar problems.
PROs can provide valuable information on treatment effectiveness, patient satisfaction, and quality of life. For example, PROs can be used to evaluate how well a treatment is working from the patient's perspective and to identify areas where improvements can be made.
PROs can also be used to assess the impact of a disease or condition on a patient's quality of life and to identify interventions that can improve the patient's overall well-being.
Patient participation in research is critical for ensuring that studies are designed with the patient's needs and preferences in mind. Patients can provide valuable insights into the impact of a condition on their daily lives, which can help to improve study design and patient-centered outcomes.
Patients can feel empowered to identify research questions that are most relevant to them and can advocate for the inclusion of patient-centered outcomes in study protocols. By collecting PROs, researchers can obtain a more complete picture of the patient's experience with a condition.
If you're interested in getting involved in research or learning more about real-world data studies, you can check out these resources:
You can also subscribe to our newsletter, where we will share new studies, research outcomes, and patient support resources.
Patient involvement in research is critical for ensuring that studies are designed with the patient's needs and preferences in mind, and can lead to better healthcare outcomes for all. The most accessible way to participate is through real-world data platforms, like PicnicHealth, that collect de-identified information from sources such as EHRs and insurance claims databases that can provide important insights into disease treatment and outcomes.
Real-world data differs from clinical trial data in that it reflects the complexity and diversity of the patient population. While real-world data has its limitations, it can be a valuable source of information for healthcare providers, researchers, and patients looking to make informed treatment decisions. By completing surveys and questionnaires, patients can provide valuable insights into their health status and experiences, which can help to improve patient-centered care and treatment outcomes.
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