Data and Long-Range Studies

I have been very excited by the media coverage devoted to Family-Based therapy, particularly the article by Roni Caryn Rabin in yesterday’s New York Times (Tuesday, October 19, 2010, on page D5).  This and other articles are highlighting the research by Dr. Daniel Le Grange and his colleagues at the University of Chicago published this month in the Archives of General Psychiatry.  Since I also subscribe to the Wall Street Journal, I was quite surprised to find a similar article in the first section of the paper – a major advance in terms of recognition of eating disorders as medical emergencies and worthy of immediate attention.

As I’ve often mentioned, I wish I had known about this 22 years ago but since I didn’t, one of my goals is to spread the word so parents of those who have developed eating disorders more recently can take advantage of this research and work to get their children on the path to recovery.

This kind of publicity ties in with the opening address made by Dr. Russell Marx during the Professional Day offered by Princeton University on Monday, October 11, 2010, following the NEDA Conference.  Dr. Marx, who was also the chair of the NEDA conference,  highlighted five points that he believes are critical for the continuing progress of research and practice in this field.

The five points are:

Educate – he noted, for example that we all have access to new information technologies and information channels that can be utilized to educate and inform.

Integrate -  too often there’s a disconnect between parents, therapists, medical doctors, nutritionists, psychiatrists and others involved in the care of one with an eating disorder.   Constant communication between and among all members of the team is critically important and all involved must be open to change and new ideas.

Advocate – this word explains the point and the more all of us step up and speak out on behalf of those affected by these disorders, the more publicity we’ll gather and the more support the field will gain.

Innovate – when one considers that it can take 17 years from the release of study results (the basic research) to the utilization of those results (clinical approaches in treatment), we need to find a way to get those ideas out there sooner to encourage further innovation based on the outcomes of experience in the clinical/residential setting.  So again I note how exciting it is that the media picked up on the results mentioned at the start of this post.  Kudos to Harriet Brown, too, for her unflagging energy to gather opportunities to speak about her new book, Brave Girl Eating, that espouses Family-Based Therapy.

Validate – so much of the information “out there” right now is anecdotal.  Some of the information, in fact, may no longer be correct.  For example, it is quite possible that the number of people dying from eating disorders is going down because of improvements (still a long way to go) in treatment protocol and insurance coverage.  More and more institutions and funding organizations are demanding outcome measures to accompany grant requests.  These outcome measures create value.

Dr. Marx noted that the Cystic Fibrosis Foundation has made huge strides in all of these areas and has data on 93% of the patients who have been diagnosed with cystic fibrosis.  Imagine if this could be done for those with eating disorders!!

Which leads me to my observation that there just aren’t enough long-range studies let alone data sets on eating disorder outcomes for patients who have sought treatment.  This information becomes especially  important when new or existing medications or techniques are used or innovations are put into practice.  Following results of the use of, e.g., Cognitive Remediation Therapy or Family-Based Therapy or residential placement where a number of different therapies are put into play at once or the use of a new or existing medication, and putting this in a database could help to speed up choices of treatment and eliminate those things that aren’t as effective.   A lot of treatment based on earlier research is occurring right now but there’s no central gathering place for this data nor probably have any standards been set so that anyone in the field can access it, understand it and then utilize it.  Doors need to be opened and information shared if we are to make progress against these deadly diseases.

Upon my return from the NEDA conference, I discussed Dr. Marx’s important talk with my husband who is an IT executive.  He alerted me to a consortium using the acronym CDISC   This acronym stands for Clinical Data Interchange Standards Consortium. “….CDISC is a global, open, multidisciplinary, non-profit organization that has established standards to support the acquisition, exchange, submission and archive of clinical research data and metadata. The CDISC mission is to develop and support global, platform-independent data standards that enable information system interoperability to improve medical research and related areas of healthcare.  CDISC standards are vendor-neutral, platform-independent and freely available via the CDISC website.”

Imagine if all researchers used these standards!!! And then worked with people knowledgeable in the development of databases to make information on eating disorders accessible to all.

Most assuredly, progress would occur much faster and the people involved in the field of eating disorders could implement advancements sooner on behalf of our loved ones.