Letter to AMA... Privacy considerations

Dear Mr. Nelson:

My name is Marcy Zwelling. We have not met. I am a delegate to the AMA from California and a passionate advocate for my patients and quality health care.

I am aware of a series of lawsuits in the Northeast involving IMS, a vendor of my patients' private health care data and physician prescribing habits. I know that the AMA has intimate details of the lawsuit(s) and that the case is now at the Appeals Level. I believe that the AMA allows physicians to opt out of the AMA Rx data mining program but not many doctors know about this. That said, I absolutely appreciate the fact that the AMA has made it is so much easier to find the opt out on the website. I opted out months ago and had to "re-do" my efforts today. I don't know how that glitch happened.

The conflicts of interest are huge. I believe that the AMA suffers these conflicts more and more as our membership numbers go down. It is publicly quoted that the AMA made $46 million dollars on the "sale of data". I think that this lawsuit presents the proverbial "fork in the road". The AMA has the opportunity to finally stand up for physicians, our rights, and our patients privacy by standing with the State of New Hampshire against data mining.

I want nothing more that the AMA's continued success but we cannot be successful if we continue to live in this world of conflict. Our AMA's patient privacy policies are well conceived and I applaud the efforts of those before me who had the wisdom to articulate the "line in the sand". I believe that this data mining violates our privacy policy and is only the tip of the iceberg. Companies like SureScripts (now Rx-Hub) sell my patients' data to any "covered entity" under HIPAA. This practice is a huge invasion of privacy, all legal under HIPAA. I would love for the AMA to work to legislate against any sale of any patient data but... to get to that place, I think you first must take a position in this appeals case. As they say....... "what are you going to do? Not what do you say or think?"

We all know that clinical health data can be used wisely. We all want clinical data to be used by the right people in the right studies and at the point of service for individual patients. But, that is NOT what happens now. It is, however, the "umbrella" that others are using in order to give themselves access and that is wrong.

The licensure to utilize patient data MUST be authorized on a case by case, one event at a time basis, with FULL disclosure to our patients. HIPAA, as you know allows for the use of data by "business associates" [Business associate services to a covered entity are limited to legal, actuarial, accounting, consulting, data aggregation, management, administrative, accreditation, or financial services.] We are all aware that patients receive inquiries from all "business associates" all the time proving to me that identified data is sold at will. Patients have brought this to my attention. (I don't bill insurance so if anyone has information about my patient that is privileged to THIS office it would be thru their PBM and an Rx).

I was shocked to here that even Dr. Robert Kolodner, the current Coordinator of the Office of National Health Information Technology, was surprised to know that data was being exchanged and sold so freely (or so he said). it seems that there has been little conversation about this violation of our patients' privacy. Shouldn't this be a priority of the AMA? I took an oath. Every Medical Doctor receiving an MD degree in the US took that oath "All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal."

I believe that the AMA has at its core the obligation to stand up for the profession and our patients and put a stop to the practice of data "mining" and the practice of data distribution and sale. Our patients' data is just that... belonging to our patients. It is a privilege to have the data and to use it for the specific betterment of their health and not for the utility of any other entity. While I believe that we must find a way to safely license the use of CLINICAL data after full disclosure and with our patients' informed consent, that must come after we have secured their privacy.

This is our moment. We must seize it. The AMA has an amazing opportunity to re-examine its core values and to do the right thing.

I eagerly await your reply and I thank you for your most serious consideration.

Marcy