Aggregating Multiple Real-world Data Sources Using a Patient-centered Health-data-sharing Platform

Overview

Journal NPJ Digit Med

Specialty Medical Informatics

Date 2020 May 1

PMID 32352038

Citations 22

Authors

Sanket S Dhruva

Joseph S Ross

Joseph G Akar

Brittany Caldwell

Karla Childers

Wing Chow

Laura Ciaccio

Paul Coplan

Jun Dong

Hayley J Dykhoff

Stephen Johnston

Todd Kellogg

Cynthia Long

Peter A Noseworthy

Kurt Roberts

Anindita Saha

Andrew Yoo

Nilay D Shah

Affiliations

Soon will be listed here.

Abstract

Real-world data sources, including electronic health records (EHRs) and personal digital device data, are increasingly available, but are often siloed and cannot be easily integrated for clinical, research, or regulatory purposes. We conducted a prospective cohort study of 60 patients undergoing bariatric surgery or catheter-based atrial fibrillation ablation at two U.S. tertiary care hospitals, testing the feasibility of using a patient-centered health-data-sharing platform to obtain and aggregate health data from multiple sources. We successfully obtained EHR data for all patients at both hospitals, as well as from ten additional health systems, which were successfully aggregated with pharmacy data obtained for patients using CVS or Walgreens pharmacies; personal digital device data from activity monitors, digital weight scales, and single-lead ECGs, and patient-reported outcome measure data obtained through surveys to assess post-procedure recovery and disease-specific symptoms. A patient-centered health-data-sharing platform successfully aggregated data from multiple sources.

Citing Articles

Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.

Song S, Ashton M, Yoo R, Lkhagvajav Z, Wright R, Mathews D J Med Internet Res. 2025; 27:e51955.

PMID: 39832140 PMC: 11791458. DOI: 10.2196/51955.

Trauma systems in high socioeconomic index countries in 2050.

Gauss T, de Jongh M, Maegele M, Cole E, Bouzat P Crit Care. 2024; 28(1):84.

PMID: 38493142 PMC: 10943799. DOI: 10.1186/s13054-024-04863-w.

Integrating 4 methods to evaluate physical function in patients with cancer (In4M): protocol for a prospective cohort study.

Thanarajasingam G, Kluetz P, Bhatnagar V, Brown A, Cathcart-Rake E, Diamond M BMJ Open. 2024; 14(1):e074030.

PMID: 38199641 PMC: 10806877. DOI: 10.1136/bmjopen-2023-074030.

Venous Access: National Guideline and Registry Development (VANGUARD): Advancing Patient-Centered Venous Access Care Through the Development of a National Coordinated Registry Network.

Iorga A, Velezis M, Marinac-Dabic D, Lario R, Huff S, Gore B J Med Internet Res. 2023; 25:e43658.

PMID: 37999957 PMC: 10709786. DOI: 10.2196/43658.

Uses of Social Determinants of Health Data to Address Cardiovascular Disease and Health Equity: A Scoping Review.

McNeill E, Lindenfeld Z, Mostafa L, Zein D, Silver D, Pagan J J Am Heart Assoc. 2023; 12(21):e030571.

PMID: 37929716 PMC: 10727404. DOI: 10.1161/JAHA.123.030571.

References

Yasaitis L, Berkman L, Chandra A . Comparison of self-reported and Medicare claims-identified acute myocardial infarction. Circulation. 2015; 131(17):1477-85. PMC: 8211377. DOI: 10.1161/CIRCULATIONAHA.114.013829. View

Rehman K, Wazni O, Barakat A, Saliba W, Shah S, Tarakji K . Life-Threatening Complications of Atrial Fibrillation Ablation: 16-Year Experience in a Large Prospective Tertiary Care Cohort. JACC Clin Electrophysiol. 2019; 5(3):284-291. DOI: 10.1016/j.jacep.2018.11.013. View

Mohsen M, Aziz H . The Blue Button Project: Engaging Patients in Healthcare by a Click of a Button. Perspect Health Inf Manag. 2016; 12:1d. PMC: 4696090. View

Dhruva S, Ross J, Schulz W, Krumholz H . Fulfilling the Promise of Unique Device Identifiers. Ann Intern Med. 2018; 169(3):183-185. DOI: 10.7326/M18-0526. View

Basch E . Patient-Reported Outcomes - Harnessing Patients' Voices to Improve Clinical Care. N Engl J Med. 2017; 376(2):105-108. DOI: 10.1056/NEJMp1611252. View

Delbanco T, Walker J, Darer J, Elmore J, Feldman H, Leveille S . Open notes: doctors and patients signing on. Ann Intern Med. 2010; 153(2):121-5. DOI: 10.7326/0003-4819-153-2-201007200-00008. View

Guimaraes P, Krishnamoorthy A, Kaltenbach L, Anstrom K, Effron M, Mark D . Accuracy of Medical Claims for Identifying Cardiovascular and Bleeding Events After Myocardial Infarction : A Secondary Analysis of the TRANSLATE-ACS Study. JAMA Cardiol. 2017; 2(7):750-757. PMC: 5710613. DOI: 10.1001/jamacardio.2017.1460. View

Basch E, Deal A, Dueck A, Scher H, Kris M, Hudis C . Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017; 318(2):197-198. PMC: 5817466. DOI: 10.1001/jama.2017.7156. View

McConnell M, Shcherbina A, Pavlovic A, Homburger J, Goldfeder R, Waggot D . Feasibility of Obtaining Measures of Lifestyle From a Smartphone App: The MyHeart Counts Cardiovascular Health Study. JAMA Cardiol. 2016; 2(1):67-76. DOI: 10.1001/jamacardio.2016.4395. View

10.

Shuren J, Califf R . Need for a National Evaluation System for Health Technology. JAMA. 2016; 316(11):1153-4. DOI: 10.1001/jama.2016.8708. View

11.

Dhruva S, Ross J, Desai N . Real-World Evidence: Promise and Peril For Medical Product Evaluation. P T. 2018; 43(8):464-472. PMC: 6065494. View

12.

Speier W, Dzubur E, Zide M, Shufelt C, Joung S, Van Eyk J . Evaluating utility and compliance in a patient-based eHealth study using continuous-time heart rate and activity trackers. J Am Med Inform Assoc. 2018; 25(10):1386-1391. PMC: 6188512. DOI: 10.1093/jamia/ocy067. View

13.

Sherman R, Anderson S, Dal Pan G, Gray G, Gross T, Hunter N . Real-World Evidence - What Is It and What Can It Tell Us?. N Engl J Med. 2016; 375(23):2293-2297. DOI: 10.1056/NEJMsb1609216. View

14.

Gresham G, Hendifar A, Spiegel B, Neeman E, Tuli R, Rimel B . Wearable activity monitors to assess performance status and predict clinical outcomes in advanced cancer patients. NPJ Digit Med. 2019; 1:27. PMC: 6550281. DOI: 10.1038/s41746-018-0032-6. View

15.

White J, Withers K, Lencioni M, Carolan-Rees G, Wilkes A, Wood K . Cardiff cardiac ablation patient-reported outcome measure (C-CAP): validation of a new questionnaire set for patients undergoing catheter ablation for cardiac arrhythmias in the UK. Qual Life Res. 2015; 25(6):1571-83. PMC: 4870294. DOI: 10.1007/s11136-015-1194-1. View