The importance of a name

The New York Times had an article today about the intangible importance of having a name for a disorder and how patients claim ownership of that name. The issue is being raised by a group of patients unhappy that the term Asperger's Syndrome will be removed from fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. Asperger's Symdrome is a mild form of autism, in which children and adults often are socially awkward but many are verbal prodigies and highly skilled in specific expertise. But inconsistent diagnosis and a move to depict mental illnesses as falling on a spectrum rather than "they-have-it-or-they-don't" mentality have lead the editors of the D.S.M.-V to place what is known as Asperger's on the autism spectrum. But patient advocates are concerned that losing the well-known and well-accepted term will make others reluctant to seek treatment if they exhibit mild autism spectrum symptoms.

The American Psychiatric Association is expected to post a draft of the new terms and diagnostic criteria and solicit feedback from the community. There will likely be a lot of it, and the feedback will give the authors insight into how patients see themselves and their community.

Patients like me

The New York Times Magazine ran an article on Sunday about a new web site that can potentially change how research is shared among patients with chronic illnesses. "PatientsLikeMe" is a web site devoted to helping patients with chronic illnesses share information and in the process collects a vast amount of quantifiable data about how people live with these illnesses. Because the information is shared voluntarily, the web site has the ability to gather and share a large amount of information with little worry about privacy laws. Patients are able to use this information to make decisions about their own disease management and help facilitate conversations with their own physicians.

This web site has a great potential for getting information and new research to patients and helping them manage their own care. It also is a great resource for propelling research as researchers can watch cohorts of patients who report trying new therapies. But some are concerned about patients self-medicating for complex diseases based on information they glean, and potentially misinterpret, from non-medical sources.

You can find the article here: http://www.nytimes.com/2008/03/23/magazine/23patients-t.html?ex=1363838400&en=71acf69334c63f68&ei=5124&partner=permalink&exprod=permalink

So what's the answer? How do you balance a great resource of data and health information, with standard practice and medical expertise? How does this potentially impact the patient-physician relationship?

Patient advocates

CNN ran a moving story about a cancer patient who took her diagnosis and used it to propel herself to start a foundation to advocate for other patients. You can see the story here: http://www.cnn.com/2008/HEALTH/01/30/bg.paf.founder/index.html.

The Patient Advocate Foundation helps patients navigate the complex worlds of doctors and treatments. And the people who work for the Foundation help patients find their voice.

A patient advocate in an increasingly complex system

The New York Times calls Frederic Riccardi an attack dog disguised as an insurance counselor for the Medicare Rights Center. Riccardi helps elderly patients navigate the complex Medicare system. He endures bureaucratic phone trees at the state and federal level, to make sure patients get the medication and medical care they need. It's a difficult, but important job. And this story shows the difference an advocate, who works to communicate directly with patients and not above them, can make in the lives of patients.

See the story here: http://www.nytimes.com/2007/12/18/health/18tren.html?ex=1355634000&en=513a31769b8713f0&ei=5124&partner=permalink&exprod=permalink