The lopsided power imbalance that favors the biomedical establishment over the people (consumers/survivors) who are allegedly in receipt of its care is carefully protected by a moat of secrecy. The more I look into the myriad of relationships and interdependencies within the labyrinth of Big Pharma, insurance companies, the medical profession with its supporting eco-system, and the governing regulatory agencies who are tasked with protecting the public’s health interests, the more daunting the challenge appears for well-meaning individuals to attempt to effect serious change.
Luckily, because of the Internet and the rise of social networking and social media, people are connecting and sharing an encyclopedia of knowledge related to mental health reform. For instance, I really appreciated Alison Bass’ recently published piece, “New NIH Rules about Conflicts of Interest are a Swiss Cheese of Loopholes“ on the frustration with newly announced rules on financial conflicts of interest among federally funded researchers.
There are two specific areas I’m interested in investigating relative to transparency and a citizen’s right to know. Both were referenced in Robert Whitaker’s, “Anatomy of an Epidemic.” The first is the data collected by well-financed data miners that aggregate specific doctor prescription records from pharmacies and resell it to pharmaceuticals. It seems to me this data should also be available to the public. The data is de-identified, which means individual patent data is encrypted and protected per HIPPA regulations and patients’ privacy rights. States are beginning to question the constitutionality of data miners’ rights (oddly, under the first amendment) to collect this data and market it. A landmark case in this arena was Sorrell v. IMS Health that was just decided recently. It went all the way to the Supreme Court. The high court decided against the State of Vermont which had passed a law preventing the practice. But industry insiders in health care privacy circles think there is still room for more litigation involving this practice. If IMS Health and other data mining firms have a right to the secondary use of health information for marketing, shouldn’t citizens have a right to the data to make an informed decision about their practitioners?
The second are the fees pharmas pay KOL’s (Key Opinion Leaders). I was pleased to discover that there has been discussion and legislation sponsored that would expose these payments dating back to 2007. It seems the Physician Payments Sunshine Act was signed into law March 2010 as part of the Obama administration health care reform legislation. Again, I feel the public has right to view this data in a consumer-friendly format.
Both of these data sources, when combined with location data and user-generated ratings and comments would provide rich, authentic profiles of practicing psychiatrists. So, if a consumer is looking to find a psychiatrist in a new city, for example, he/she would have accurate profile data on all pdocs in the region – what they’re prescribing and who they’re accepting fees from, as well as how much. The dollar amounts are staggering.
Would love to hear any more details around these issues or any others that concern transparency in the eco-system among doctors, pharmacies, insurance companies, data aggregators, federal and state governments, and pharmaceutical companies.
Transparency is a good thing.
Thanks Jen. It was so great to meet with you yesterday. And, on transparency… YES. Although, I do see the irony in blogging under an alias!
i think that what you are getting to is very important. i think there needs to be more transparency from the big mental health advocacy groups also- because they are promoting certain information which is outdated- and in some cases, is loaded with hidden agendas. what can we do about that- without throwing the baby out with the bath water.
Transparency can be a tough pill to swallow for individuals who are used to controlling the message and timing of communications. It takes a selfless person who is committed to improving lives above all to embrace total transparency. In other words, in this area, transparency will be a journey as well as a destination.
The type of transparency I’m referencing in this article, however, is access to data which could be presented in a transparent fashion for the public. Probably fraught with even greater challenges, but worth pursuing IMO.
I agree with you. I think it is Selfless and also Selfish- putting the focus on the individual rather than on the organizations who want to “parent” the whole world and “rescue” everyone from untreated illness. Many times what I see is that people have traumas of their own and they react to it in weird ways- some withdraw and some “fight back”- the most passionate advocates may be people who are working out their own fears and dreams and feelings- so I like the idea of transparency being a journey-
I think that is why I am so stuck on healing. that people should have the right to healing- i know it is idealistic, but why not? what holds us back, really- its usually something like Power over others, Greed, Anger- all the kinds of things that want to bind and take and keep and control.
transparency is all about being HONEST about what really is going on. What i think is so scary is that people don’t know that they are biased when they are promoting a drug or a treatment. i just read an article on CCHR that talks about a trial that was done in a shady way.