Patient Reported Data

Mission statement

Hearing the Patient Voice

The Patient Reported Data (PRD) Program helps care teams to better understand and address patient needs by electronically collecting information directly from patients and integrating it instantly into their electronic medical records. This data is then available for further review and analysis for researchers and operations. 

At Dana-Farber Cancer Institute, patient reported data enables care teams to focus on patient priorities and improve quality of life.

Learn more about Patient Reported Data

Services

The PRD Program collects data electronically from patients, through the patient portal or in-clinic tablets, and makes it available in real time so care teams can coordinate care and support services. We also collect it longitudinally to detect and address trends.

The PRD Program’s services help our DFCI clinical, research, and operations colleagues:

  • Identify gaps or redundancies in data being collected and questions being asked of patients across the Institute 
  • Build and deploy validated instruments and other data-collection tools in the electronic health record
  • Analyze questionnaire responses and make data available for further analysis
  • Develop population health interventions based on patient responses to questionnaires

More about our services

Key contact information

Nadine Jackson McCleary, MD, MPH
Medical Director, Patient Reported Data Program
Assistant Professor, Department of Medical Oncology, Harvard Medical School

Jessica Cleveland, MSOR
Program Manager

Project highlight

PRO-CTCAE

The PRD Program built an electronic questionnaire to assess commonly experienced symptoms from the Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), a measurement system developed by the National Cancer Institute to capture symptomatic adverse events in patients on cancer clinical trials. Domains captured in the tool include fatigue, insomnia, pain, decreased appetite, nausea, vomiting, constipation, diarrhea, shortness of breath, numbness and tingling, rash, concentration, fever, anxiety, and unhappy feelings. Patient responses are integrated into the electronic medical record. 

Benefits

Patient assessments of the treatment-related symptoms they are currently experiencing are collected via electronic questionnaires in advance of each clinical visit and imported into the electronic medical record in real time. The day’s symptom report appears at the top of the provider’s screen and severe symptoms are highlighted, so they can immediately identify issues to be discussed. Symptom reports saved in a patient’s electronic medical record also help care teams monitor symptoms more accurately and systematically over time.  

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