Whose Data Are They Anyway? Can a Patient Perspective Advance the Data-Sharing Debate?

• Published in: The New England journal of medicine Vol. 376; no. 23; pp. 2203 - 2205
• Main Author: Haug, Charlotte J
• Format: Journal Article
• Language: English
• Published: United States Massachusetts Medical Society 08.06.2017
• Subjects: Clinical trials; Confidentiality; Datasets as Topic - standards; Europe; Human subjects; Humans; Information Dissemination - ethics; Information sharing; Informed consent; Informed Consent - legislation & jurisprudence; Medical ethics; Medical research; Patient Rights; Patients; Randomized Controlled Trials as Topic - ethics; Randomized Controlled Trials as Topic - standards; United States; United States Food and Drug Administration; United States > US
• ISSN: 0028-4793; 1533-4406; 1533-4406
• DOI: 10.1056/NEJMp1704485

Patients who participate in clinical trials want their data shared quickly, but they want some control over how the data are shared. And seeing clinical trial data as the property of each patient might simplify the data-sharing discussion. Most patients haven’t thought much about data sharing, according to Sara Riggare, but those who have “find the current system unreasonable. Patients expect that health care professionals and researchers use patient data in the best possible way. That there is a fight over what the best way is is perplexing and disappointing.” Riggare is an engineer and doctoral student at the Health Informatics Center at Karolinska Institutet in Stockholm, where she researches models and methods for “digital self-care” in chronic disease — ways to use technology in monitoring and treating oneself. She is also a patient. Riggare had her first . . .