SOCIAL, POLITICAL, AND ETHICAL IMPLICATIONS OF CINCH

Margaret C. Olendzki Moutit Siizai School of Medicine of the City Utiiversity of New York

There are two ways of beginning to comment on the foregoing material. One can speak in terms of the far-off, way-out implications of this grand design that has been outlined-and I think this is a grand design that needs a 10-year or a 20-year time span to fulfill all its potential. Or, one can think about its immediate implica- tions and the practical difficulties of getting it started. I would like to address the lat- ter question first.

Immediate Considerations The theme of this Workshop is “A Health Care Plan for East Harlem-NOW”.

This suggests that we are impatient, that we want to start achieving results very soon. We have indeed started, with the various first-phase projects to which Dr. Goodrich and others have alluded-such projects as sight and hearing screening for children in I.S. 201, the environmental extension agent, the bus for the Triangle, tuberculosis screening. Now we are saying that if the idea of CINCH has validity as a way of coordinating all these projects, we want to start this coordinating now-or very soon. We do mean to start almost immediately, at least with the limited re- sources we have available. We will begin with the birth certificates of all babies born in East Harlem on or after January lst, and we will put them into the system, and try to follow up at least those in the Triangle where we have health aides to make a beginning.

So the first point is that our concerns are intensely practical, as well as way-out theoretical and perhaps visionary. The plan must try to achieve practical results very soon if it is to be acceptable. The community wants action, our Department wants action. And we do believe that there will be concrete results in terms of im- provement of health levels very soon after we begin to enter the babies born in East Harlem into the follow-up system.

The plan itself, as I’m sure you are aware, is a long-term process. We have to be prepared for all kinds of difficulties, and I think we even have to face the possibility of failure.

a) the community did not feel it was on their side, helping them obtain better care for themselves and their families,

b) the providers of care did not feel it was on their side, helping them do a better job along the lines they themselves prescribe,

c) there was no money available, d) there was not enough flexibility in the public services, e) there was lack of cooperation from the voluntary and private agencies.

Yet, the idea is so persuasive and exciting that it will almost certaintly succeed in some form, at some time, in some place. We hope very much that it will be East Harlem.

The plan could fail if:

Long- Term Implications Let us look at the broader picture-at the five- or 10- or 20-year picture, when

a fairly developed Information Network for Community Health might be set up and running. (Incidentally, to put the computer in its proper place as a lowly tool

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and not a mechanical tyrant, you can leave the “C” off CINCH if you don’t like com- puters. The important idea is the Information Network for Community Health. Without the computer’s help, we will bog down in paper, as they described so graphi- cally in Baltimore. But it’s not the tail that wags the dog, it is only a technological assistant. So it can be INCH or CINCH, whichever you prefer.)

There are four broad issues on which I will comment: 1) Confidentiality; 2) Control; 3) Acceptability; and 4) Knowledge.

1) Confidentiality: The issue of confidentiality is so important and so basic that it has been raised already and will probably be raised again in our discussion. There have been some straw men set up along the way; for instance, the assumption that the paper record itself is impregnable and that all you have to worry about is the computerized record. I’m personally convinced that it is harder to “break into” a computer than into a paper record. On the other hand, some real problems remain. An amalgamated record is much more significant-and potentially explosive-than a lot of isolated bits, and so it needs special protection. Rules must be set about who can get data into the system and, still more, about who can get data out. Pa- tients must give their voluntary, informed consent before joining this record linkage system. There must be a systematic way of challenging one’s record, and having errors corrected if false information is inadvertently entered. One has only to think of credit-card billing to know what can go wrong here.

So the issue of confidentiality is one to be raised and kept in mind and constantly reviewed.

2) Control: Perhaps the most critical question is: “Who runs CINCH?” Obviously, not one medical center or medical school; still less, one department in that school. The role of the Department of Community Medicine is academic back-up for plan- ning, development, innovation, evaluation. But the operating system should obvi- ously be run by some kind of amalgam representing the public.

What kind of organization? CINCH belongs to the community, to the public, to the patient. It will be a chal-

lenging task that will not be solved overnight to come up with the best kind of structure to control and monitor CINCH. There is a need here to safeguard the repre- sentativeness of the community, and guard against divisiveness or splintering of interests. There is a need to preserve flexibility, for such a system could all too easily fossilize. There must be fair representation of all interests: consumers, providers of care, financial interests.

It may take time to develop the best possible organizational structure for carry- ing this five-fold responsibility of the health care system that Dr. Swallow described; namely, a) prevention, b) screening, c ) referral and maintenance, d) follow-up, and e) prediction.

(Incidentally, it might be intriguing to pose the possibility of changing the roles of doctor and patient-of health professionals versus the population they serve-to the point of thinking about a patient-run CINCH. Suppose the print-out came to the patient instead of the health professional?)

3) Acceptuability: Perhaps the whole idea of trying to optimize health from womb- to-womb through this or any other system is more readily acceptable for children than for adults. Better Babies for East Harlem is a pretty irresistable slogan, even if it’s less alliterative than Better Babies for Baltimore.

Healthier Adults for East Harlem, or Great Neck, or Pelham? Well, maybe. But many of the problems of adult health are due to habits we are not ready to change overnight. And perhaps it conjures up visions of a weekly print-out saying:

“John Doe is still smoking Mary Roe is still 25% overweight

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Sally Bones is drinking to excess A1 Jones is not taking enough exercise”

And this thing coming out week after week could be rather depressing if you know very well none of these people intends to do anything about it at the moment.

One must therefore stress: CINCH n z u d t bug people. Compliance must be voluntary. There must be a mechanism for shutting the darned thing off (as there was indeed in Baltimore in respect to family planning. If, after adequate explanation of its implications, a woman said she was not interested in family planning, the computer recorded the instruction not to raise the question with her again). So CINCH has to be the servant of the patient. It doesn’t have to be Big Brother con- stantly bugging him.

Acceptability may be enhanced if CINCH can be shown to improve the patient’s range of choice, not decrease it. For instance, a health worker who i s reminding the patient what needs to be done, can give unbiased information about a whole range of treatment resources from which the patient can choose. Then again, the computer can increase choice through its ability to tie together separate resources. In the past, a patient with many different health problems who was trying to coordinate his own care might seek it all in one hospital, in the forlorn hope that the various clinics and services would communicate with one another, at the very least through the medical record. But as you well know, this communication didn’t always happen. Now the patient will have more freedom to move within the system. Constructive “clinic shopping” (looking for the most suitable source of treatment for special conditions) isn’t a drawback anymore.

4) Knowledge: The fourth general area I called knowledge. This is a very broad, generic title, for it suggests that the increasing knowledge that CINCH will provide can have many different indirect results. I don’t think we can guarantee that any particular result will come to pass. We can’t say that CINCH will effect economies in care when it becomes obvious where the duplication is. We can just say that CINCH will document what goes on in the health care system so thoroughly and so repeti- tively that maybe things will change. Perhaps this change will come faster than at the present time, when everybody knows something’s wrong, but lack precise docu- mentation.

I think people will react to the new knowledge through the usual social channels. For instance:

a) CINCH can provide documentation for community action groups, or for politicians, who want to do something about a specific problem such as lead poisoning or mental retardation.

b) CINCH can point out duplication where there are too many facilities, so that health planners can efect economies-in pediatric cardiology, maybe, or amputee rehabilitation.

c) Medical practice may be affected by knowing what happens when you help it implement what it says should be done. If you remember, in Baltimore, Dr. Kate Swallow went to the doctors, to the obstetricians, to the social workers, to the nutritionists-and asked what should be done for the pa- tient. The computer merely helped to see that the patient got to the right place at the right time. And I understand that in even a limited time, when the feedback came back to the providers of care as to what happens when you take them literally, certain changes in practice began to result.

d) Finally, the health care system itself may begin to change and adjust once the diflferent parts of it begin to get in closer communication. The gaps and duplications cannot persist forever once they are so well documented.

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Conclusion I would like to suggest that we be cautious about looking too far ahead The

concept of CINCH is exciting and persuasive The computer part poses few problems when you have someone like Dr. Papell around, but it is human beings and social systems that are unpredictable There have been many good ideas in the past in the health care system, which took a long, long time to develop, or even fell by the way- side. There is many a slip. . . .

But with community backing and good will, and with collaboration from the providers of care, we hope to test out this idea in East Harlem-now-and see how far it can take us.