Patient reported data (PRD) is information that is reported directly by patients, without interpretation by anyone else(1). PRD helps care teams understand patient perspectives and respond to their unique and changing needs. PRD includes patient reported outcomes, as well as other data that comes directly from the patient, for example, through screening questionnaires or wearable technologies.
PRD can be used to:
- Screen for specific conditions or risks
- Identify symptoms and adverse events
- Assess physical and mental wellbeing
- Collect personal and family medical history
Research(2,3) has demonstrated that, with minimal impact on clinic operations, PRD helps increase:
- Duration of active treatment
- Patient engagement
- Positive clinical outcomes
- Patient quality of life
…and helps decrease:
- Emergency Department visits
The use of patient reported outcomes has been widely endorsed by:
- National Cancer Institute (NCI)
- Food and Drug Administration (FDA)
- Centers for Medicare and Medicaid Services (CMS)
- National Quality Forum (NQF)
PRD at DFCI
Since May 2015, Dana-Farber Cancer Institute has leveraged its electronic patient portal to collect an expanding scope of patient reported data, including personal and family medical history, symptoms and adverse events, and physical, mental, and functional health status.
A governance team that includes an advisory group of patient advocates and experts in oncology, quality and patient safety, pharmacology, nursing, health services research, and cancer care delivery helps guide implementation of PRD into routine practice.
“Translation of Patient-Reported Outcomes in Oncology Clinical Trials to Everyday Practice.” Annals of Surgical Oncology, volume 27, pages 65–72(2020). August 2019.
Implementing Patient-Reported Outcome Measures. NEJM Catalyst. Neil W. Wagle, Oct 2017
New Patient Intake Questionnaire (NPIQ-FX)
The PRD Program partnered with the Division of Genetics and Prevention to build a comprehensive set of questions that gather family cancer history and personal and familial genetic testing information in the electronic New Patient Intake Questionnaire.
The Division of Genetics and Prevention Department and the patient’s care team are now able to better identify and work with patients and families who may have an inherited or increased risk of cancer. Additionally, this tool has streamlined the intake process so that this information is now available institute-wide and lessens the burden of departmental questionnaires that seek to obtain the same information.
- National Quality Forum
- Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017 Jul 11; 318(2): 197–198.
- Symptom Monitoring With Patient-Reported Outcomes During Routine Cancer Treatment: A Randomized Controlled Trial. Journal of Clinical Oncology