Posted April 17, 2008 by Lygeia Ricciardi
In the New England Journal of Medicine’s April 17th edition, Kenneth Mandl and Isaac Kohane provide an overview of PHRs and their impact on health care delivery and biomedical research. The article, available by subscription is also discussed in the New York Times today. You can also find a thoughtful analysis of it on Mark Frisse’s policy blog (Dr Frisse is the Director of Regional Informatics Programs through the Vanderbilt Center for Better Health and a Professor in the Vanderbilt Department of Biomedical Informatics).
In the same issue, there is also an article by Robert Stenbrook entitled Personally Controlled Online Health Data — The Next Big Thing in Medical Care?
Posted April 16, 2008 by Lygeia Ricciardi
It’s been a particularly busy month in the world of health privacy breaches. Health records have been breached both individually and in massive data sets. They include highly personal information on the young and the old, the rich and famous and the poor.
Although Project HealthDesign and its next generation PHR tools are vastly different from the data repository type records that were recently breached, the Project is very aware of the vulnerabilities that exist within currents systems and the need to address those vulnerabilities in any context—its work in association with the University of Miami Bioethics Program continues in that direction.
On Monday the Wall Street Journal reported that nearly 50,000 patient records had been improperly accessed using the computer login of an employee of New York-Presbyterian Hospital. The employee, who worked in patient admissions, sold data on about 2,000 people for roughly $1,350 total.
On April 8, 2008, meanwhile, The Atlanta Journal-Constitution reported that the insurance records of 71,000 disadvantaged Georgia families had been made public. The families were participating in insurance programs for the poor.
On April 3, 2008 the Los Angeles Times reported that staff at the UCLA Medical Center had gone through the cancer treatment records of 70’s TV star Farrah Fawcett (of Charlie’s Angels fame). The Enquirer posted news about the return of her cancer on its web site soon after Fawcett herself had learned of it, and before she had told her son and close friends. The story followed news that pop star Britney Spears’ privacy was breached at the same center following her hospitalization in a psychiatric ward earlier this year.
In late March we learned that a laptop containing personal medical information on about 2,500 patients enrolled in a National Institute of Health (NIH) cardiac study had been stolen from a laptop in the trunk of an employee’s car.
Let’s let this month’s impressive lineup of health privacy breaches serve as a reminder that the topic is, unfortunately, still very much a growing concern as health information becomes more liquid. For some ideas about how to address privacy from a policy and technical perspective, see previous blog entries on privacy (and the Project HealthDesign e-Primer on Privacy and PHRs).
Updated April 10, 2008 by Lygeia Ricciardi
While there are many conferences and events that cover some aspect of the overlap between health and information technology, I wanted to draw your attention to a few coming up this month that are particularly relevant to PHRs:
April 3, 2008 – Personal Health Records: Personal Control of Health Data and Patient Provider Communications.
This is the 2nd in a 3-part Series of web conferences on Personal Health Records sponsored by the Agency for Healthcare Research and Quality. (Online)
April 11-13, 2008 – Consumer Health Informatics: An Intensive Learning Experience
The purpose of this two and one-half day course is to increase the knowledge of clinicians on the needs of the consumer for using e-health systems to provide benefits throughout society. It will offer an in-depth look at the latest research, systems, and practice in Consumer Health Informatics. (Claremont, California)
April 15, 2008 -- HHS Public Consumer Empowerment Workgroup Meeting
This is a meeting of one of the workgroups of the American Health Information Community (the Community), run out of the Department of Health. It is made open to the public via webcast—you can ask questions at the end. (Online)
April 17, 2008 -- Healthcare Informatics Webinar: Google, Microsoft, & Dossia Create the Personal Information Network
In this webinar, experts Vince Kuraitis and David Kibbe discuss their vision of the Personal Health Information Network. 1:00PM Eastern, 10:00AM Pacific. (Online)
April 23/24, 2008 -- HIMSS Virtual Conference & Expo
The is not a Web Seminar; it is a fully interactive event that incorporates online learning, live chat, active movement in and out of exhibit booths and sessions, vendor presentations, contests and more. The conference is 100 percent virtual. Speakers include Jonathan Bush (athenahealth) and Matthew Holt (The Healthcare Blog). (Online)
April 24, 2008 – Innovations in Healthcare Delivery
The Federal Trade Commission will host a one-day public workshop to examine recent trends in health care delivery. In a series of panel discussions, workshop participants will consider the competition and consumer protection issues regarding particular health care delivery innovations. (Washington, DC)