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Matthew Marshall, M.D., President
Pennsylvania Medical Care Foundation
Pennsylvania State Medical Society
20 Erford Road
Lemoyne, Pa. 17043
Re: Medical Data Resource Corporation
I must apologize for opening up at the last Board meeting the subject of a common data pool without adequate advance preparation on a complicated subject. This letter is an effort to provide some of that background clarification.
It seems important to stress what this proposal is not. It is not a proposal that we set up yet another data pool within the Foundation to increase the redundancy of data collection. Noria it a proposal to run a computer center. And yet, it is a proposal to set up something which sounds like those two things and therefore attracts opposition from those who confuse it with what it sounds like but isn't.
For several years, I have attempted to talk to hospital computer people, Blue Cross, and Blues Shield computer people, and HUP-PAS, about the desirability of commonality of data for the purpose of speeding up intercommunication and reducing redundancy. So far as I a see, everyone agrees with the desirability of the proposal, but no one has been able to do much with it. While I suppose there is a certain amount of competitive jealousy, and a certain amount of fearfulness about loss o autonomy, this sort of thing does not seem to me to be at the heart of the obvious inertia. Rather, the real roots of the problem lie in protecting the security of data, protecting legitimate individual priorities over the flow of the data, and lack of definition of the scope of the outcome. Plus uncertainty of who would pay for what.
After considerable mulling and considering, I have come to the conclusion that the project is only feasible if a new corporate entity is created. None of the involved parties (including Foundation PSRO) should dominate the organization or profit directly from it. And none of the involved parties is able to represent the point of view of the real owner and beneficiary, the public. I have come to feel that the secondary transfer of data originally gathered for a legitimate purpose must be dominated by a public body liked with the courts and/or the legislature, to ensure that the organization which receives the data is entitled to receive it,and that any subsequent secondary use is approved by the public as being in the public interest. Therefore, such a new corporate entity must seek to enable legislation to legitimize it. It probably should be linked with the courts so that its ongoing decisions could be carried out without the need to wait for one-by-one legislation approvals. I would envision a board made up of lawyers, judges, newspaper editors, ministers, etc, who would be given authority to approve the transfer of individual items of data, and the specific release of reports for a limited stated purpose. That is to say, the computer director would meet all requests with the response that he would be glad to comply if the person desiring the data will bring him a piece of paper from the public board, authorizing him to comply.
Second, the independent corporation seems to e to be necessary for the proper transfer of money between the parties. If Blue Shield inputs the data, and HUP uses it, a way must be found for HUP to pay Blue Shield, on a one-for-one basis this is easy enough without a new corporation. But if the database is a mixture of items obtained from several sources, the data recipient is almost helpless to define the basis for reimbursement. It seems to me that commonality of data implies a commonality of payment; everyone pays to receive data, everyone is paid for supplying it.
Third, there is the inevitable for priorities. I recently got an insight into this problem by hearing about the shaming of computer facilities between New Jersey Blue Shield and Blue Cross. The Cross runs the facility, but the Shield makes 70% use of it. The Shield is very unhappy about the service it receives, and nurses the suspicion that Cross work gets a higher priority on the time and talent of the facilities. As a matter of fact, this is true of every computer facility even when it is solely owned by one organization. IBM strongly advises every company with a computer to have a computer director report directly to top management. Otherwise, the department given direct authority (usually the fiscal department) will put its own how-priority jobs ahead of the high-priority jobs of outsiders. I once had the experiences of hearing a computer director refuse a high-priority request from another department, at the time when I had personal knowledge that the computer was addressing Christmas cards. Since most computers directors have done this to other people, they have no intention of letting it happen to themselves. No organization can afford to have its priorities set by outsiders unless it perceives the outside organization as having a highly legitimized authority in which they can participate.
Fourth, there is a very difficult technical problem. No one wants to scrap his equipment, database, or library of proprietary programs. This proposed organization needs to have an enormous dialog between technicians as to the compatibility of tape, codes, blocking, format, File size, data compression, and storage. No doubt there are some problems which can only be resolved by the evolution of existing systems toward the common goal. No doubt a means of payment must be devised to recognize the added cost of working toward community instead of cheaper, quick-and-dirty solution. The Foundation is a new element in the equation, and its need will be very had to foresee, but certain basic data requirements are obviously going to be needed, and a great many non-Foundation interchanges could be started with our anything new to the data pool.
Now, therefore I propose that the Foundation convened a series of meetings between all of the involved parties, with the aim of defining the goal and preparing a grant proposal to organize it.
Best personal regards,
George Ross Fisher, M.D.
cc: larry Fosselman
Originally published: Thursday, December 27, 2018; most-recently modified: Thursday, May 23, 2019