A lot has happened in the past week on this issue. Here are my opinions about where we stand now. Headcase and Koby both bring up legitimate and important points.
The biggest concern expressed in our letter last week was a change in Amazing Charts? privacy policy. The policy went from one in which our information could not be shared without our explicit permission, to one where our data could be used in certain forms without our permission or even without prior knowledge.
We were also upset about the fact that this policy change occurred without explicit notice from the company. The company has acknowledged the latter error and is "taking ownership" of it. Their new communication is part of their plan to clarify company policy in an open and transparent manner.
We don't have the final word on what this policy will be. We will only know that after we have seen the new EULA. Their recent statements indicate to me that we will retain appropriate and important control of our data.
Just to be clear, I never felt that Amazing Charts was violating HIPAA regulations. (While most of us believe that HIPAA is designed to protect patient privacy, it also protects a series of practices that facilitate data sharing. That is a topic for another day).
Our ability to keep control of our data if we left Amazing Charts or if the company folded has also never been in dispute. We have always been promised those rights and I believe we have always continued to retain them. This is not a trivial point: it is an important benefit of using Amazing Charts.
The point of contention has been the company?s ability to use our data in a de-identified fashion for an assortment of purposes. Such use might include worthwhile clinical studies or identifying our CME needs. It could also include sale to pharmaceutical companies for reasons less altruistic but more financially beneficial to the company. We understand that AC has not done this yet, but were concerned that the policy change enabled them to do so. It appears that they have backed-off on that policy, and will now give us the option to ?opt-out? of any data sharing. This includes sharing of de-identified data.
In my opinion, this resolves the issue nicely. If users choose to allow the company to use their data, they can choose to do so. If they do not want to share it (for whatever reason; protection of patient privacy or the belief that the data is their own, to utilize however they choose) then they can choose that route.
I see this as a successful resolution for us, as users, and for our patients. I also believe that it benefits AC, as the company retains a special place in the crowded EMR marketplace. AC is the EMR that most respects the privacy of our patients, as well as data property rights of providers.
The process by which this decision occurred is also significant. This issue was brought to the attention of the company at a meeting of the Clinician Advisory Board (CAB) last month. We pointed out the change in policy, and some of us expressed our concern about the policy itself, and also about the fact that it happened in a less than open fashion. After some weeks of internal discussion at AC, we had another CAB meeting last week. In the interim, a significant but fairly small number of users who felt strongly about the issue made their feelings known to John Squire. Company leadership certainly demonstrated a willingness to listen to our concerns. Some of us expressed our views quite forcefully, and while they did not always agree, they always exhibited a willingness to hear our views. The final decision represents a significant departure from their initial plans; a change which occurred in response to all of our input.
No one should expect me to stop expressing my opinions to AC. In my view, the company has much to do to make this EMR into the product we want it to be. On this particular issue, they have demonstrated a willingness to accept our input, align it with company goals and policies, and create a workable solution. After the initial CAB meeting, John Squire said ?we will fix this? and I believe that he did. This should allay some of the fears that the purchase by Pri-Med and the hire of an executive from Microsoft to run AC would change the culture of the company in a negative way. Jon Bertman?s philosophy of kind capitalism is very much alive at AC.
