Inform patients of the rationale for self-report assessment and how the information will be used.
Sharing information with patients is a key component of patient-centered care and is likely to increase patient participation. Multiple modalities can be utilized including:
- Providing a script to providers and staff to use in clinic explaining the rationale for patient-reported outcomes.
- Sending a letter to patients from their providers explaining the rationale and method for collecting patient-reported outcomes.
- Creating a patient-facing webpage within the healthcare organization's site.
- Providing printed materials such as brochures to patients.
Examples of Patient-facing Educational Websites
- Hospital for Special Surgery’s website and 1-minute video define patient-reported outcome measures and explains why they are important for patient care. Learn more>>
- Mass General Brigham created a website and video describing how patient-reported outcome measures are used to track patient progress and aid in clinical decision making. Learn more>>
- Northwestern Medicine uses PROMIS short forms to monitor symptoms in people receiving cancer care. Their website explains the aims of this assessment and instructions for accessing and completing the assessment through the electronic health record patient portal. Learn more>>
- Cincinnati Children’s created a 2-minute video explaining why patients are asked to complete patient-reported outcome measures, how that information is used, and why assessments are repeated over time.
- Scottish Rite for Children answered the “what,” “why,” and “how” of routine collection of patient-reported outcomes in a website news release. Learn more>>
- Shriners Hospitals for Children created a website providing information about the rationale for their implementation of PROMIS measures in outpatient clinics. Learn more>>
- The University of Utah created a website describing their mEVAL program. It includes information on how measures are used, how frequently patients will be asked to complete measures, and the science behind patient-reported outcome measures. Learn more>>
- The Agency for Clinical Innovation in New South Wales, Australia, developed a 15 minute video-based patient education module that reviews the rationale for patient-reported measures, how the information is used, and how to complete the measures. Learn more>>
- KLIK is a web-based application that assesses, scores, and displays patient-reported outcome measures for children. An educational website and videos for both pediatric patients (view here) and their parents (view here) explain how KLIK fits into patient care. When viewing the videos, use the Settings/Auto-translate feature to view closed captions if you don’t speak Dutch.
Examples of Patient-facing Educational Materials
Examples of Sharing Clinical Outcomes with Patients
- The Cleveland Clinic Neurological Institute publishes mental health and physical health outcomes using PROMIS Global for patients with cognitive disorders receiving care in the Center for Brain Health. Learn more>>
Examples of Patient-facing Websites for PRO Technology
Numerous patient-reported outcome administration platforms are available (see Other Digital Tools). Some provide information for patients about measures and how they will be used.
- MyGiHealth is a mobile app that provides a platform for patients with gastrointestinal conditions to track symptoms, compare their symptoms to others, and understand treatment options. Learn more>>
- Norse Feedback is a European platform that enables patients to complete self-report measures and provides that information to their providers. Learn more>>
Last updated on 12/6/2023