Who owns patient data? Patients should, but often don't, according to an opinion article in the New England Journal of Medicine by Kenneth Mandl, MD, director of Boston Children's Hospital Computational Health Informatics Program and Isaac Kohane, MD, PhD, chair of the department of biomedical informatics at Harvard Medical School in Cambridge, Mass.
"As patients strive to manage their own health and illnesses, many wonder how to get a copy of their health data to share with their physicians, load into apps, donate to researchers, link to their genomic data, or have on hand just in case," the authors write at the opening of the article.
The authors suggest that EHRs contribute to the inability of patients' to get their own data in two respects: They only show data from a single provider, which isn't a complete picture of the information; and the information stays with the hospital, making it harder for patients to seek second opinions or use their data for clinical studies.
They outline a handful of additional reasons why pursuing a health data economy where patients have the final say about their data is valuable:
- It enablespatients to gather all data from all healthcare encounters in one place, providing a more complete picture of a patient's health.
- It fosters greater coordination in the care multiple providers deliver to each patient.
- It allows patients to easily donate their data for research purposes.
- It empowers patients to augment their data and correct errors in their health records.
- It feeds the development of intelligent healthcare software or healthcare apps.
The authors suggest four steps to help shift toward a patient-driven information economy:
- CMS and private insurers should offer strong incentives for healthcare organizations to provide data to patients.
- Development should be backed by federal healthcare IT policy and demand from purchasers of health systems, of uniform, standard, public application programming interfaces to catalyze the development of an ecosystem of health data apps for providers and patients.
- Tools should be created that enable patients to set permissions and consents for who can access their health data and for what purposes.
- Healthcare should adopt rigorous authentication frameworks akin to those in the e-commerce industry to provide data security and accountability.
Read the full article here.