Related Experiment Video
Updated: Jun 12, 2026
05:47
Evidence-based Knowledge Synthesis and Hypothesis Validation: Navigating Biomedical Knowledge Bases via Explainable AI and Agentic Systems
Published on: June 13, 2025
The PRIME project: developing a patient evidence-base
Sophie Staniszewska1, Sally Crowe, Douglas Badenoch
1RCN Research Institute, School of Health & Social Studies University of Warwick, Coventry, UK. Sophie.Staniszewska@warwick.ac.uk
Summary
This study introduces patient-based evidence to capture lived experiences of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The PRIME project created a patient evidence-base offering in-depth insights for a more patient-focused research agenda.
Area of Science:
- Health Services Research
- Patient-Reported Outcomes
- Qualitative Research
Background:
- Healthcare evidence traditionally prioritizes clinical and economic outcomes.
- Patient contributions to evidence are often undervalued and difficult to integrate.
- There is a need to formally incorporate patient experiences into healthcare evidence.
Purpose of the Study:
- To propose and operationalize the concept of patient-based evidence.
- To develop a patient evidence-base capturing the lived experience of ME/CFS.
- To complement existing clinical and economic evidence with patient perspectives.
Main Methods:
- The PRIME project conducted interviews with 40 individuals diagnosed with ME/CFS.
- Participants represented diverse demographic characteristics and varying severity of illness.
- Qualitative data collection focused on capturing the lived experience of ME/CFS.
Main Results:
- A comprehensive patient evidence-base was developed through the PRIME project.
- This evidence-base contains extensive data on patient experiences, organized thematically.
- The data offers in-depth insights into the lived experience of ME/CFS for researchers and clinicians.
Conclusions:
- The PRIME project's patient evidence-base is a valuable starting point.
- Further conceptual and methodological development is needed for patient-based evidence.
- Integrating patient-based evidence with clinical and economic evidence requires further exploration.
Related Concept Videos
01:11Clinical Trials: Overview
Clinical development focuses on how the drug will interact with the human body and encompasses four key phases of clinical trials, each serving a specific purpose in assessing the safety and effectiveness of new drugs. These phases overlap and build upon one another. Phase I involves a small group of healthy volunteers (typically 20-80 individuals) or, in cases where significant toxicity is expected, patients with the targeted disease, such as cancer or AIDS. The volunteers are tested for...
01:16Clinical Trials
Clinical trials are prospective experimental studies conducted on humans to determine the safety and efficacy of treatments, drugs, diet methods, and medical devices. Using statistics in clinical trials enables researchers to derive reasonable and accurate conclusions from the collected data, allowing them to make wise decisions in uncertain situations. In medical research, statistical methods are crucial for preventing errors and bias.
There are four phases in a clinical trial. A phase one...
There are four phases in a clinical trial. A phase one...
01:28Preclinical Development: Overview
Preclinical development consists of a series of tests that ensure the safety and efficacy of a new therapeutic compound before it is tested in humans. There are four main phases to this process. First, safety pharmacology tests are conducted to ensure the drug does not produce any acutely harmful effects. These tests examine parameters such as bronchoconstriction, cardiac dysrhythmias, blood pressure changes, and ataxia. Next, preliminary toxicological testing is performed to determine the...
01:13Patient-centered Care
Patient-centered care involves delivering care beyond inpatient hospitalization. Reflective practice can enhance a patient-centered approach. Reflective practice is a process of reasoning that considers all aspects of the present situation, including practicalities, learning from personal practice, and consideration of patient needs. Patients appreciate care decisions made while considering their input. Involving the patient in their care provides the patient with a sense of contribution rather...
01:27Nursing Clinical Information System
Nursing Clinical Information System (NCIS)
A Nursing Clinical Information System (NCIS) is a specialized type of healthcare information system tailored to meet the unique needs of nursing practice. It incorporates the principles of nursing informatics to streamline information management and improve the quality of care delivery.
Critical attributes of NCIS include:
A Nursing Clinical Information System (NCIS) is a specialized type of healthcare information system tailored to meet the unique needs of nursing practice. It incorporates the principles of nursing informatics to streamline information management and improve the quality of care delivery.
Critical attributes of NCIS include:
01:11Guidelines for Writing Outcome
When developing expected outcomes for a patient care plan, the nurse should adhere to the following recommendations:
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care evaluation by...
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care evaluation by...