Skip to main content Accessibility help
×
Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-26T16:55:47.760Z Has data issue: false hasContentIssue false

Chapter 9 - Patient Data, Ownership, Storage, and Social Media

from Part I - General Ethics

Published online by Cambridge University Press:  29 May 2020

Stephen Honeybul
Affiliation:
Sir Charles Gairdner Hospital, Royal Perth and Fiona Stanley Hospitals
Get access

Summary

The amount of data associated with healthcare has risen steeply recently due to the advent of new diagnostic and imaging tests and the computerization of medical records. At the same time, other data associated with patients separate from their experience in the healthcare system has also grown exponentially due to the popularization of cell phones and other digital devices and social media. Increasingly, this data – historically separate from the healthcare system – is being proposed for use in health services research and patient care. In this chapter, we highlight the ethical issues presented by this massive expansion of patient data and discuss ethical issues that researchers and clinicians must respect in the collection, ownership, and storage of patient data from these new sources, through the discussion of two illustrative cases in neurosurgical research and patient care.

Type
Chapter
Information
Publisher: Cambridge University Press
Print publication year: 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Cohen, I. G., Mello, M. M. HIPAA and protecting health information in the 21st century. JAMA 2018; 320: 2312.CrossRefGoogle Scholar
Onnela, J. P., Rauch, S. L. Harnessing smartphone-based digital phenotyping to enhance behavioral and mental health. Neuropsychopharmacology 2016; 41: 16916.Google Scholar
Mikal, J., Hurst, S., Conway, M. Ethical issues in using Twitter for population-level depression monitoring: a qualitative study. BMC Medical Ethics 2016; 17: 22.CrossRefGoogle ScholarPubMed
Smith, A. U.S. Smartphone Use in 2015. Pew Research Center. 2015.Google Scholar
Singer, N. ‘Weaponized ad technology’: Facebook’s moneymaker gets a critical eye. New York Times, 16 August 2018.Google Scholar
Torous, J., Staples, P., Onnela, J. P. Realizing the potential of mobile mental health: new methods for new data in psychiatry. Current Psychiatry Reports 2015; 17: 602.Google Scholar
Staples, P., Torous, J., Barnett, I., et al. A comparison of passive and active estimates of sleep in a cohort with schizophrenia. NPJ Schizophrenia 2017; 3: 37.Google Scholar
O’Doherty, K. C., Christofides, E., Yen, J., et al. If you build it, they will come: unintended future uses of organised health data collections. BMC Medical Ethics 2016; 17: 54.CrossRefGoogle ScholarPubMed
Bietz, M. J., Bloss, C. S., Calvert, S., et al. Opportunities and challenges in the use of personal health data for health research. JAMA 2016; 23: e428.Google ScholarPubMed
Godard, B., Schmidtke, J., Cassiman, J. J., et al. Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective. Eur. J. Hum. Genet. 2003; 11 Suppl 2: S88122.CrossRefGoogle ScholarPubMed

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×