Beyond PROs: Patient Generated Data
Clinicians are trained to invite patients to relay the history of their symptoms and illness when they meet. A thorough patient story describes their health, symptoms, health risks, and past treatments and medical history. After patients tell their complete health history, the clinician generates a list of possible causes of the symptoms and uses laboratory and radiographic tests to explore and confirm the diagnosis. Next, the patient and clinician define treatment approaches to relieve the symptoms and improve health.
Today’s digital tools provide multiple options to support the patient in narrating their health history. Patient reported outcomes are an important option. When patients complete standardized patient-reported outcomes measures (PROs) they provide a succinct, reproduceable summary of their symptoms and health. PROs offer many advantages as consistent PRO symptom assessments can generate a succinct summary of symptom severity compared to others and provide an easy metric to assess improvement (or not) over time.
In addition to PROs, other digital technology tools offer health insight. Examples below include:
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Hundreds of thousands of adults wear watches that quantify the level of their daily physical activity and their heart rate. These data can serve as important information to augment the patient’s history. As technology advances, patients will capture additional ‘passive’ data to describe their behaviors.
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Geographic maps can describe the proximity of fresh vegetables and fruits to support healthy diets or regional waste water samples can inform regional infection risks. Using regional data, we can augment the individual patient story to better understand what conditions threaten patient health.
We found patient-reported race, education, and income were associated with patient-reported pain or functional scores.
Danielson EC, Li W, Suleiman L, Franklin PD. Social risk and patient-reported outcomes after total knee replacement: Implications for Medicare policy. Health Serv Res. 2023 Aug 21. doi: 10.1111/1475-6773.14215. PMID: 37605376.We outline examples of opportunities, challenges, and priorities throughout PROM implementation to equitably advance value-based care at both the patient and population level. Stern BZ, Franklin PD, Shapiro LM, Chaudhary SB, Kamal RN, Poeran J. Equity-Driven Implementation of Patient-Reported Outcome Measures in Musculoskeletal Care: Advancing Value for All. J Bone Joint Surg Am. 2023 May 3;105(9):726-735. doi: 10.2106/JBJS.22.01016. Epub 2023 Jan 9. PMID: 36728450
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We all likely know someone who has purchased their ancestral history and genetic profile from readily available services. In addition, health care systems test and monitor genetic risks and anomalies for some patients. These data expand the stories that patients tell.