Many of us trust that our insurance companies or hospital or health care providers keep our information confidential. But that trust has repeatedly been broken.
In February, ProPublica published a story by Pulitzer Prize-winning journalist Charles Ornstein about this situation, noting that since October 2009, health care providers and organizations (including third parties that do business with them) had reported more than 1,140 large breaches of data security, affecting close to 41 million people.
On April 2nd, Healthstyles begins with producer and moderator Diana Mason interviewing Ornstein about the confidentiality of our health care information. Ornstein will be continuing his investigation of breaches of health care information and their impact on the organizations and on people’s lives. Those who would like to share their stories of experiences with breaches of their health care information with Ornstein can go to the Patient Privacy page of ProPublica. (Disclosure: Charles Ornstein is a member of the National Advisory Council for the Center for HealthMedia& Policy at Hunter College that sponsors Healthstyles.) You can listen to the interview by clicking here:
A number of advisory panels, including some for the Food and Drug Administration and the Cochrane Collaboration that conducts systematic reviews of the evidence on various health care practices, include what are called consumer representatives.
Most times, these are representatives of consumer advocacy organizations who are vastly outnumbered by health professionals and industry representatives on the panels. In fact, the consumer representatives may find that they are the lone dissenting voice on a recommendation put forth by a panel.
Nonetheless, they are an important and essential voice that can serve as the conscience of a panel, demanding accountability for whose interests are being advanced in a particular discussion or recommendation.
On the second part of Healthstyles, Diana Mason interviews Maryann Napoli, deputy director of the Center for Medical Consumers, about her experiences as a consumer representative on federal and other advisory panels. You can listen to this interview here:
So tune in on Thursday, April 2nd, from 1:00 to 2:00 PM on WBAI, 99.5 FM in New York City (streaming online at www.wbai.org).