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Philadelphia Professional Standards Review Organization, Inc.,
February 20, 1976
E. Langdon Burwell, M.D.
114 Locust Street
Falmouth, MAss. 02540
Dear Dr. Burwell
Thank you for giving me the opportunity to read your paper on integrated data systems. Your ideas are very close to my own, and I will try to enclose with this letter a copy of my own proposal along those lines. There are a few differences between your ideas and mine (in the letter), but most of the critical modifications in my views have evolved since the letter was written.
1. Payment for Submission of Data. It seemed to me then and seems to me now, that there is a tendency to abuse anything that is free, including data. Let us imagine that Blue Cross is collecting employment data about the patient, related to his status as a member of a subscriber group. SInce the data is there, others feel they would like to use it. Let us then suppose in time that Blue Cross denies the information is of no value but receives protests from the other users of the data. A more concrete example is the question of Blue Shield coverage, which is of interest to the physician, but which may be supplied by Blue Cross to whom it is of interest. Rather than pressure, someone to supply information as a public service, or permit bureaucratic blackmail of some sort in return for releasing data, I believe it is best to adopt a policy of paying everyone who submits data and charging everyone who uses data. This keeps it clean, at a minimal bookkeeping nuisance, and permits analysis of the cost-effectiveness of every element of the file.
2. Board of Directors. This comes very close to the issue of ownership. We all grew up in a non-profit system of universities, hospitals, societies and now PSRO's; the non-profit corporation seems comfortable for medical things. And yet I believe a reasonable case can be made that many of our difficulties are traceable to inherent anomalies of the non-profit perpetuity. I was very interested to discover that animosity to non-profit corporation did not begin with Representative Wright Patman of Texas but has a history tracing back to that turning point in history caused by Henry the Eight, and at least one other historic moment involving Julius Caesar. For the purpose of this discussion, the important point about the form of incorporation is that the Directors normally represent the viewpoint of the ownership, and ownership is concerned with profits and dividends. However mercenary it may seem, profit-oriented ownership is necessarily concerned with efficiency, and with serving the market. That is, with quality.
Non-profit corporations justify their tax exemption because of service to the public, but in sad truth, they usually deteriorate into conspiracies between the employees (anxious for perpetuity) and the customers (anxious for a bargain). It is not invariably clear why the public ought to subsidize either the bargain or job security.
My feeling is that, at the very least, the management of the facility should be open to competitive commercial bidding, and that performance standards and performance incentives be developed.
All right. Suppose you have a no-nonsense team of managers who produce a quality data customer who has given up his alternatives to go with the common system and finds his vital priorities sacrificed on the altar of cost-cutting. He finds that the central computer organization is costing him ten dollars to save itself a penny. So long as the organization is non-profit, there will be no opportunity to strike a bargain: this is worth ten dollars to me, and I will pay up if you will do the work for me. Keep your money, you are likely to be told; we like to go home early.
So I would like to argue for profit-oriented ownership, operating in a competitive environment. Since the nature of the joint computer proposal is inherently monopolistic, it is difficult to see a straight head-to-head competition between several data vendors, each of whom runs a total operation. The best I can do is propose alternatives:
A. In the first option, the ownership (hence the Board of Directors) would rest entirely with the suppliers of data. That is, the data owners bond together to sell data to customers of data.
B. In the second option, the users of data own a corporation which supplies their needs by buying input at the best available price from alternative sources.
C. In the third option, the processor-broker buys data at the best price and sells it at the best rate, facing competition from others who to do the same thing more cheaply.
It seems to me that the most viable mechanism is A, in which the owner of data regard themselves as having a commodity they wish to merchandise. The Board would consequently be dominated by data suppliers. You will recall that I feel the worst possible arrangement is the reverse: a board of customers. The customer inherently has altogether too much power growing out of his choice whether to buy or not to buy. At some point, coercion is going to creep into this system: you must use it, you must supply data. I can live with the vision of suppliers of data saying you must use our data because the possible answer is: go to hell. I feel much more uncomfortable with users of data saying, give us your data, or you won't get paid for something else.
I hope you find this argument persuasive because I could go on at some length about it, and now I propose to turn to politics.
3. The Politics of data. I have not yet addressed the issue of confidentiality, but it is now proper to do so. You will notice by the example that people give (syphilis, illegitimate births, alcoholism) that the public is on our side in the confidentiality issue because of guilt. Therefore, thank God for sex and drug abuse. However, the really important issues to all of the participants have to do with a more serious vice: the thirst for power.
I believe my views on the whole subject of the common computer vendor took a sharp turn rightward after a few sessions on the Board of the Philadelphia H.S.A. My original thought was that we should entrust the issues of confidentiality to a citizen commission of responsible citizens, probably newspaper editors, black ministers, and the like. Having sat through sessions in which such people expressed their views on medicine at the H.S.A., I am as appalled as John Adams must have been at what Jefferson was saying.
I believe that a jury of twelve men good and true will usually come to a fair decision, but I am far from convinced that we can construct a public body which could withstand the political pressures on medical confidentiality. The more conservative members of our profession may well be wise in their reluctance to allow anyone else to be in a position to decide whether medical information should be released, or restrained. Ambitious district attorneys can subpoena, investigative reporters can subvert, and vendors can bride their way past any presently conceivable set of safeguards or assurances.
The furthest I a now willing to go in this matter is to play with the idea of total medical information control lying in the hands of physicians. If this is not achievable, perhaps data control in the hands of data suppliers, generally. But data control or even advice about data control, vested in the hands of users of data seems a very scary thing.. The necessary climate of trust has been destroyed, and until it returns, the users of data will have to have better arguments than cost reduction.
Well, perhaps there is a strategic compromise available. Perhaps the fiscal intermediaries have already got control of more medical data than we can politically take away from them. Perhaps they need to be bribed. Since the fiscal intermediaries are obviously worried that the PSRO's will take the whole ball game away from them (it clearly would be a simple matter to pay the bills if you had the medical data), perhaps it will come down to an appraisal of whether either side has a realistic chance of total victory. If not, perhaps the concession will have to be: give medical back the medical data, and we will let you have the financial data. But then there must exist separate systems, and medicine must control the medical system.
4. The Medical Record. If we talking of a sanctuary of medical data, guarded by vestal virgins, it must contain more than the ICDA code on a Medicare invoice. The obsolete manual system to be absorbed by modern electronics perhaps is not the insurance claims, but the hospital chart. Here we are talking of dozens of pages and hundreds of entries whose volume, disorder and unreadability have destroyed their own information value. Acting in response to joint Accreditation pressure, to the desire of student nurses to immortalize themselves, to the ritual of the problem-oriented mystical experience, to the laboratory habit of filling half a page with an adhesive report form containing a single number, an to the forms design of professionals in system analysis, the medical chart now totally obstructs its informational purpose. And no one even pretends to read it. Like a funeral parlor, we take something that is dead, get it all prettied up, and then bury it.
5. The Wild Blue Yonder. Several years ago, Harry Schwartz warned us that the big winner was going to be IBM. It is worth a moment to consider the literal truth of that. You notice that IBM has not brought out a significant new product in ten years, in spite of plowing a billion dollars a year back into the company. It would look as though the present goal is to go into space satellite data transmission. Having unhorsed General Electric, RCA and Xerox, IBM now appears ready to try to smash Bell Telephone. The goal is to the transmission system of the computer to computer via satellite.
And thus the information system of the future will not be from the paper of the data creator to the computer vendor, to the paper records of the data user. Rather, it will exist in dispersed form in the computer of the data creators, accessible through the satellite to an inquiry from the data users. I believe the issue of confidentiality, which was largely a creation of technology, will receive a technological solution. Nobody uses your data if it is resident in your computer unless you choose to remove the File Protect, in return for what the lawyers call a "consideration."
Now, isn't that the way it ought to be ?
George Ross Fisher, III, M.D.
Originally published: Friday, December 28, 2018; most-recently modified: Thursday, May 23, 2019