44
A CONSUM4ER PERSPECTIV E ON THE PROFESSIONAL RE SPONSIBILITY FOR THE QUALITY OF HEALTH CARE*
RHODA H. KARPALIKIN, LL.B. fExecutive )irector Consumers Union of the United States, Inic. Mount Vernon. N. Y.
AMi delighted to have this opportunity to present a consumer view of some of the questions under discussion at this conference. First, a word about my organization. Consumers Union is the nonprofit, independent organization which produces the magazine, Consumer Reports. Many people think of Consuiner Reports only in terms of comparative tests of appliances and automobiles, but we also have covered health and health care since our first issue appeared in 1936. That issue reported on breakfast cereals, including their nutritional aspects. It also contained an article on Alka Seltzer which gave the medical view of Dr. Harold Aaron who now heads the editorial board of The Medical Letter, a report on the hazards of lead in toys, and a comparison of grade A and grade B milk. I keep a copy of that issue on display in my office as a constant reminder of the many important consumer issues that have managed to survive for 39 years. Volume I, No. 1 of Consumer Reports had only 24 pages and a tiny circulation. Today, approximately two million readers buy a much larger issue of Consumer Replorts. We have come a long way. In addition to our magazine, Consumers Union publishes curricula guides for schools and books such as The Medicine Show and Licit and Illicit Drugs. We also translate material from Consumer Reports into brief television reports which appear twice a week on commercial news programs in about 50 viewing areas. Our 1974 series of articles titled, "Is the XVater Safe to Drink" recently won the National lMagazine Award for public service. Notwithstanding our own growth and the gains of the consumer
Quiality
of Care Assessment in the Light of the Relation *Presented in a panel, Between Doctor and Patient, as part of the 1975 Annual Health Conference of the New York Academy of Medicine, The Professioiial Responsibility for the Quality of Health Care, held April 24 and 25, 1975.
Bull. N. Y. Acad. Med.
~
A COSMRP CONSUMER PE.RSPECTIVE RS
E
T
V
4
45
movement since our inception, I am often left with the feeling that while the number of people rolling the stone uphill surely has increased the stone also has gotten larger and the incline steeper. We have moved that stone a little, but not enough. The consumer movement still needs a lot of help from its friends. One area in which help is most necessary is in health care. Indeed, my participation in this conference directly fulfills part of the initial purpose of Consumers Union, which was not only to provide consumers with information and counsel on goods and services, but to initiate and cooperate with individual and group efforts to help to create and maintain decent living standards. Consumers Union has continuously reflected its members' concern about the quality of health care and their concern that the needs of consumers for reliable information and high-quality health care were not being met fully by health-care professionals or by the system within which that care was being delivered. The introductory material in this program has limited the issues under discussion and eliminated a number of matters which have been paramount in discussions of health care. There are recognizable benefits in a narrow discussion, but an assessment of the care which is being provided to consumers cannot and should not be made in a vacuum. When Consumier Reports discusssed the need for universal and mandatory health-insurance coverage we noted a number of factors which caused us to support the most comprehensive legislation now under consideration. The system of health care in the United States is characterized by runaway costs. Statistical indicators used to measure the general health of a population ranks the United States 13th in the world in infant mortality, i 8th in life expectancy for males at birth, and i i th in life expectancy for females at birth. Our health-care system provides inadequate insurance protection to the poor and the financing of health services is chaotic and often irrational. We noted that the present system results in a far lower quality of care for the poor than for the well-to-do, is cost-inefficient, and leaves both enlightened physicians and many consumers of its services dissatisfied. In this context a systematic and respected consumer assessment of health care is an important need. Its goals are improved care, increased consumer satisfaction, and increased satisfaction on the part of some physicians as well. This assessment comes at a time when many comVol. 52, No. 1, January 1976
46
KARPATKIN H. R. H. KARPATKIN R.
munities are articulating a new role for consumers. The consumer commission of the European Common Market has developed a consumer bill of rights, which has been urged in many nations throughout the world. It includes the right to protection, particularly of health, safety and economic interests; the right of redress; the right to information and education; the right of representation (the right to be consulted, represented and to participate in decisions of consumer concern).* I doubt if anyone at this conference would dispute the consumer's right to assess the quality and price of goods which are sold and services which are rendered or to affect the marketplace with that assessment. Such a right, however, requires consumer sovereignty: a situation in which consumers' market decisions directly affect the cost, quality, and allocation of resources and in which suppliers respond to consumers choices. But that is not easy to accomplish in the medical marketplace. The health-care industry clearly lacks the competitive market mechanism which is a prerequisite for consumer sovereignty. Peter Schuck (Director of Consumers Union's WX'ashington office) in "Ethics of Health Care," a paper published in i974 by the National Academy of Sciences, noted several reasons for this void: i) Consumer ignorance: a lack of information about quality, competency, prices, services, drugs, and the like 2) Lack of consumer participation in the making of decisions 3) The perverse economic incentives of the third-party payment system 4) Provider control of licensure, accreditation, and professional dis-
cipline
5) Lack of purchasing power for the poor There is insufficient time to discuss all these factors, but I shall focus for a moment on the paucity of consumer information. Some professional people in medicine and other fields argue that the ignorance of consumers is an inescapable ingredient in the delivery of highly specialized professional services such as law and medicine. Is this true? Many organized efforts have been made to rationally and effectively replace the ignorance of consumers with sufficient knowledge so that they can participate in decisions about the modes of health-care de*Commission of the European Communities, Div. for Industrial Information and Consumers: The European coiinsumer come3 of age. lad. Soc. No. 15/75, April 15, 1975. Brussels, Luxemburg.
Bull. N. Y. Acad. Med.
A CONSUMER PERSPECTIVE
-~
~
47 ~~ACNUERPRPCTE4
livery and in assessments of the quality of care delivered to them and their fellow consumers. A number of things are happening, and others could and should happen to provide an important consumer role in the assessment of quality. First, in view of the sophisticated discussions which have preceded mine I hesitate to suggest this simple proposition: the earliest stage at which assessments should be made is in the consumer's selection of the physician. Consumers ought to be able to choose on the basis of some knowledge of the cost, credentials, and affiliations of the doctors whom they are considering-not on faith, desperation, absence of options, or veneer. Those who provide health services should willingly and fully disclose to consumers a variety of information. Prospective patients should not be limited to blind recommendations; they should be able to consider doctors' fees, backgrounds, and methods of practice on the basis of detailed information. Consumers' and doctors' organizations should cooperate in the dissemination of such information. Some consumer groups in the United States have attempted to prepare directories of doctors, based on questionnaires to local doctors requesting such information. They have met with less than an enthusiastic response from the medical profession. The introduction to one such directory noted that most consumers can find out more about a car which they plan to buy than about a physician who may hold a life in his or her hand. In the September I974 issue of Consumer Reports we published an article titled, "How to Develop a Local Directory of Doctors." It included a sample questionnaire which asked physicians for information concerning specialties, subspecialties, support personnel, education, certification, appointments, availability, fees and billing, office equipment, prescription practices, and pediatrics information. Consumers Union strongly supports the development of such local directories. If these directories were available, we believe that they would improve the consumer's capacity to choose a doctor who is likely to render the care which the consumer wishes to receive. This would enable consumers to have some impact on the marketplace through their choices. In time, doctors probably will welcome directories of this kindat least, they should. If they do, they will help set the tone for their brother and sister professionals in the legal field who are resisting similar efforts. Consumers Union is presently suing the American Bar Vol. 52, No. 1, January 1976
48
H. KARPATKIN R. H. KARPATKIN'
R.
Association and the Virginia State Bar to remove roadblocks to the dissemination of a similar questionnaire and directory concerning lawyers. After consumers have some rational basis on which to choose a doctor, we may ask: What else do they need to know to participate fruitfully in the process of assessment? That is another major hurdle. Medicine is a profession, but all of it need not be a mystery. Part of it can be demystified by what Dr. George NV. Mvlelcher described as education for patients. Considerable information should be made available to the consumer, in medicine as in appliances. A consumer can understand how a refrigerator works without being able to build or repair one; there is some parallel in medicine. Consumers Union has been removing some of the mystery from medicine for 39 years: we would be delighted to see an increase in the number of doctors and professional associations doing the same. Our informative book, The Medicine Show, has been sent to more than 5 million readers in the last 14 years. Articles in Consumer Reports on such topics as high blood pressure, cancer of the breast, immunization, drug pricing, and how to choose a doctor consistently attract strong attention. However, we are still rolling our stone uphill. In the course of their consultations, physicians need to provide far more information about a patient's medical condition, medications and their side effects, and optional forms of treatment. The competition has the victims surrounded and outgunned. Most information on health matters come to patients not from doctors or organizations such as Consumers Union, but from advertisements which are paid for by drug companies and from unrealistic television programs. The medium of television has had terrifying success and consequences. A recent study* found 70% of healthrelated television advertisements to be unsatisfactory or misleading. Drug companies, according to the Pharmaceutical Manufacturers Association, invested almost 9% of their sales income in advertising in 1971.
In the face of such an onslaught of misinformation, physicians have a special obligation to fully and clearly inform patients about conditions and therapies, and, where appropriate, to present realistic and patient-oriented options for joint discussion. This should include, as
*Smith, F. A., Trivax, G., 'Zuehlke, D. A., Lowinger, P., and Ngheieil, T. L.: Health
information during a week of television. New Eug. J. Mued. 286:516-20, 1972.
Bull. N. Y. Acad. Med.
A CONSUMNER PERSPECTIVE CONSUMER
A
PERSPECTIVE
49
49
Dr. Melcher pointed out, the right to second opinions before surgery is performed. However, physicians should do more. They might question their own relations with drug companies. Should they be recipients of drug company giveaways? Many businesses today prohibit their employees from accepting gifts from suppliers because of a potential conflict of interests. Should physicians follow this example? How can a physician who is the intermediary between the patient and a company, whose advertising is harmful to the interests of their patients' health, affect that advertising? Are physicians manipulated by drug companies into prescribing drugs by the more expensive brand names rather than by the less expensive generic names?* A physician who is passive in the face of drug-company abuses and television misinformation is not helping patients to develop the kind of information that will enable them to assess the professional services rendered. Assessments involve both stated and unstated standards: I used to measure my doctor against Lionel Barrymore and Lew Ayres-Dr. Gillespie and Dr. Kildare. How many real-life doctors would want their patients to assess them in comparison with Dr. Welby or the handsome and involved senior resident in "Medical Center"? Should the medical treatment provided by competent physicians have to be evaluated by patients in the context of the broadsides of misinformation with which consumers are deluged by today's mass-media advertisements and programming? While lack of the necessary information and other factors may prevent patients from exercising consumer sovereignty in a free-market sense and while the medical marketplace needs to be restructured, certain institutional roles for consumers can be considered in order for the consumer's voice to be properly heard. This involves a commitment by those controlling the various delivery systems to work toward consumer representation in the decision-making process. We should consider a variety of ways to secure that representation: i) To the extent that Professional Standards Review Organizations (PSRO) are established and operate, consumer interests should be *For example, in January 1975 Conlsumer Reports noted that one company which manufactured a particular drug sold it to four different drug companies. These four companies then sold it to drug stores under four different brand names at four different prices. Physicians who prescribe this product under these brand names may cause patients to pay from $11.40 to $31.74 per 100 for the same product.
Vol. 52, No. 1, January 1976
5
0
50
R. H. KARPATKIN R. H.
KARPATKIN~~~~~~~~~~~~~~~~
represented in these, and all records and findings should be subject to public scrutiny after establishing the necessary safeguards for confidentiality. 2) Institutions which pay for medical care (such as the giant Blue Cross) should be charged with the responsibility for promoting consumer interests in regard to the control of costs and the quality of care. Institutional reforms should assure this. It has been suggested that such plans-like suggestions for the reform of utilities-should include the financing of an independent consumer advocate to review requests for rate increases and to represent the consumers' interest before regulatory agencies. 3) In the i96os the concept of citizen participation in public life flourished, most notably in the field of education. Some businesses in the United States are taking steps to assure the representation of nonbusiness interests on boards of directors. Geniune consumer representation in the decisions of institutions and agencies providing or affecting health care would result in a more responsive and just system. Consumer representatives, of course, would have to be consumer advocates. Such participation would have to be believed in, subsidized, and respected by the agencies and institutions. It would need the kind of technical support which would render lay participation in professional areas meaningful. Various models for participation, which relate to the form and purpose of the institution involved, would have to be developed and evaluated. 4) Finally, so many decisions in medical care are made by the federal government, through both legislation and regulation, that medical consumers, like all consumers, would be aided by a governmental agency for consumer advocacy-a voice, not a power, which would present arguments, ask questions, gather data, and try to redress errors of law in the interest of consumers. While increased knowledge and participation on the part of consumers may not transform any system of medical care, it can become part of a process in which the quality of care can be improved, standards of quality can be articulated, and performance can be assessed to satisfy the interests of consumers. The participation of consumers will assure that our feedback from consumers is institutionalized, that the grievances of consumers are processed, and that we shall move in the direction of a more patient-oriented and just system. Bull. N. Y. Acad. Med.
A CONSUM4ER PERSPECTIV E ON THE PROFESSIONAL RE SPONSIBILITY FOR THE QUALITY OF HEALTH CARE*
RHODA H. KARPALIKIN, LL.B. fExecutive )irector Consumers Union of the United States, Inic. Mount Vernon. N. Y.
AMi delighted to have this opportunity to present a consumer view of some of the questions under discussion at this conference. First, a word about my organization. Consumers Union is the nonprofit, independent organization which produces the magazine, Consumer Reports. Many people think of Consuiner Reports only in terms of comparative tests of appliances and automobiles, but we also have covered health and health care since our first issue appeared in 1936. That issue reported on breakfast cereals, including their nutritional aspects. It also contained an article on Alka Seltzer which gave the medical view of Dr. Harold Aaron who now heads the editorial board of The Medical Letter, a report on the hazards of lead in toys, and a comparison of grade A and grade B milk. I keep a copy of that issue on display in my office as a constant reminder of the many important consumer issues that have managed to survive for 39 years. Volume I, No. 1 of Consumer Reports had only 24 pages and a tiny circulation. Today, approximately two million readers buy a much larger issue of Consumer Replorts. We have come a long way. In addition to our magazine, Consumers Union publishes curricula guides for schools and books such as The Medicine Show and Licit and Illicit Drugs. We also translate material from Consumer Reports into brief television reports which appear twice a week on commercial news programs in about 50 viewing areas. Our 1974 series of articles titled, "Is the XVater Safe to Drink" recently won the National lMagazine Award for public service. Notwithstanding our own growth and the gains of the consumer
Quiality
of Care Assessment in the Light of the Relation *Presented in a panel, Between Doctor and Patient, as part of the 1975 Annual Health Conference of the New York Academy of Medicine, The Professioiial Responsibility for the Quality of Health Care, held April 24 and 25, 1975.
Bull. N. Y. Acad. Med.
~
A COSMRP CONSUMER PE.RSPECTIVE RS
E
T
V
4
45
movement since our inception, I am often left with the feeling that while the number of people rolling the stone uphill surely has increased the stone also has gotten larger and the incline steeper. We have moved that stone a little, but not enough. The consumer movement still needs a lot of help from its friends. One area in which help is most necessary is in health care. Indeed, my participation in this conference directly fulfills part of the initial purpose of Consumers Union, which was not only to provide consumers with information and counsel on goods and services, but to initiate and cooperate with individual and group efforts to help to create and maintain decent living standards. Consumers Union has continuously reflected its members' concern about the quality of health care and their concern that the needs of consumers for reliable information and high-quality health care were not being met fully by health-care professionals or by the system within which that care was being delivered. The introductory material in this program has limited the issues under discussion and eliminated a number of matters which have been paramount in discussions of health care. There are recognizable benefits in a narrow discussion, but an assessment of the care which is being provided to consumers cannot and should not be made in a vacuum. When Consumier Reports discusssed the need for universal and mandatory health-insurance coverage we noted a number of factors which caused us to support the most comprehensive legislation now under consideration. The system of health care in the United States is characterized by runaway costs. Statistical indicators used to measure the general health of a population ranks the United States 13th in the world in infant mortality, i 8th in life expectancy for males at birth, and i i th in life expectancy for females at birth. Our health-care system provides inadequate insurance protection to the poor and the financing of health services is chaotic and often irrational. We noted that the present system results in a far lower quality of care for the poor than for the well-to-do, is cost-inefficient, and leaves both enlightened physicians and many consumers of its services dissatisfied. In this context a systematic and respected consumer assessment of health care is an important need. Its goals are improved care, increased consumer satisfaction, and increased satisfaction on the part of some physicians as well. This assessment comes at a time when many comVol. 52, No. 1, January 1976
46
KARPATKIN H. R. H. KARPATKIN R.
munities are articulating a new role for consumers. The consumer commission of the European Common Market has developed a consumer bill of rights, which has been urged in many nations throughout the world. It includes the right to protection, particularly of health, safety and economic interests; the right of redress; the right to information and education; the right of representation (the right to be consulted, represented and to participate in decisions of consumer concern).* I doubt if anyone at this conference would dispute the consumer's right to assess the quality and price of goods which are sold and services which are rendered or to affect the marketplace with that assessment. Such a right, however, requires consumer sovereignty: a situation in which consumers' market decisions directly affect the cost, quality, and allocation of resources and in which suppliers respond to consumers choices. But that is not easy to accomplish in the medical marketplace. The health-care industry clearly lacks the competitive market mechanism which is a prerequisite for consumer sovereignty. Peter Schuck (Director of Consumers Union's WX'ashington office) in "Ethics of Health Care," a paper published in i974 by the National Academy of Sciences, noted several reasons for this void: i) Consumer ignorance: a lack of information about quality, competency, prices, services, drugs, and the like 2) Lack of consumer participation in the making of decisions 3) The perverse economic incentives of the third-party payment system 4) Provider control of licensure, accreditation, and professional dis-
cipline
5) Lack of purchasing power for the poor There is insufficient time to discuss all these factors, but I shall focus for a moment on the paucity of consumer information. Some professional people in medicine and other fields argue that the ignorance of consumers is an inescapable ingredient in the delivery of highly specialized professional services such as law and medicine. Is this true? Many organized efforts have been made to rationally and effectively replace the ignorance of consumers with sufficient knowledge so that they can participate in decisions about the modes of health-care de*Commission of the European Communities, Div. for Industrial Information and Consumers: The European coiinsumer come3 of age. lad. Soc. No. 15/75, April 15, 1975. Brussels, Luxemburg.
Bull. N. Y. Acad. Med.
A CONSUMER PERSPECTIVE
-~
~
47 ~~ACNUERPRPCTE4
livery and in assessments of the quality of care delivered to them and their fellow consumers. A number of things are happening, and others could and should happen to provide an important consumer role in the assessment of quality. First, in view of the sophisticated discussions which have preceded mine I hesitate to suggest this simple proposition: the earliest stage at which assessments should be made is in the consumer's selection of the physician. Consumers ought to be able to choose on the basis of some knowledge of the cost, credentials, and affiliations of the doctors whom they are considering-not on faith, desperation, absence of options, or veneer. Those who provide health services should willingly and fully disclose to consumers a variety of information. Prospective patients should not be limited to blind recommendations; they should be able to consider doctors' fees, backgrounds, and methods of practice on the basis of detailed information. Consumers' and doctors' organizations should cooperate in the dissemination of such information. Some consumer groups in the United States have attempted to prepare directories of doctors, based on questionnaires to local doctors requesting such information. They have met with less than an enthusiastic response from the medical profession. The introduction to one such directory noted that most consumers can find out more about a car which they plan to buy than about a physician who may hold a life in his or her hand. In the September I974 issue of Consumer Reports we published an article titled, "How to Develop a Local Directory of Doctors." It included a sample questionnaire which asked physicians for information concerning specialties, subspecialties, support personnel, education, certification, appointments, availability, fees and billing, office equipment, prescription practices, and pediatrics information. Consumers Union strongly supports the development of such local directories. If these directories were available, we believe that they would improve the consumer's capacity to choose a doctor who is likely to render the care which the consumer wishes to receive. This would enable consumers to have some impact on the marketplace through their choices. In time, doctors probably will welcome directories of this kindat least, they should. If they do, they will help set the tone for their brother and sister professionals in the legal field who are resisting similar efforts. Consumers Union is presently suing the American Bar Vol. 52, No. 1, January 1976
48
H. KARPATKIN R. H. KARPATKIN'
R.
Association and the Virginia State Bar to remove roadblocks to the dissemination of a similar questionnaire and directory concerning lawyers. After consumers have some rational basis on which to choose a doctor, we may ask: What else do they need to know to participate fruitfully in the process of assessment? That is another major hurdle. Medicine is a profession, but all of it need not be a mystery. Part of it can be demystified by what Dr. George NV. Mvlelcher described as education for patients. Considerable information should be made available to the consumer, in medicine as in appliances. A consumer can understand how a refrigerator works without being able to build or repair one; there is some parallel in medicine. Consumers Union has been removing some of the mystery from medicine for 39 years: we would be delighted to see an increase in the number of doctors and professional associations doing the same. Our informative book, The Medicine Show, has been sent to more than 5 million readers in the last 14 years. Articles in Consumer Reports on such topics as high blood pressure, cancer of the breast, immunization, drug pricing, and how to choose a doctor consistently attract strong attention. However, we are still rolling our stone uphill. In the course of their consultations, physicians need to provide far more information about a patient's medical condition, medications and their side effects, and optional forms of treatment. The competition has the victims surrounded and outgunned. Most information on health matters come to patients not from doctors or organizations such as Consumers Union, but from advertisements which are paid for by drug companies and from unrealistic television programs. The medium of television has had terrifying success and consequences. A recent study* found 70% of healthrelated television advertisements to be unsatisfactory or misleading. Drug companies, according to the Pharmaceutical Manufacturers Association, invested almost 9% of their sales income in advertising in 1971.
In the face of such an onslaught of misinformation, physicians have a special obligation to fully and clearly inform patients about conditions and therapies, and, where appropriate, to present realistic and patient-oriented options for joint discussion. This should include, as
*Smith, F. A., Trivax, G., 'Zuehlke, D. A., Lowinger, P., and Ngheieil, T. L.: Health
information during a week of television. New Eug. J. Mued. 286:516-20, 1972.
Bull. N. Y. Acad. Med.
A CONSUMNER PERSPECTIVE CONSUMER
A
PERSPECTIVE
49
49
Dr. Melcher pointed out, the right to second opinions before surgery is performed. However, physicians should do more. They might question their own relations with drug companies. Should they be recipients of drug company giveaways? Many businesses today prohibit their employees from accepting gifts from suppliers because of a potential conflict of interests. Should physicians follow this example? How can a physician who is the intermediary between the patient and a company, whose advertising is harmful to the interests of their patients' health, affect that advertising? Are physicians manipulated by drug companies into prescribing drugs by the more expensive brand names rather than by the less expensive generic names?* A physician who is passive in the face of drug-company abuses and television misinformation is not helping patients to develop the kind of information that will enable them to assess the professional services rendered. Assessments involve both stated and unstated standards: I used to measure my doctor against Lionel Barrymore and Lew Ayres-Dr. Gillespie and Dr. Kildare. How many real-life doctors would want their patients to assess them in comparison with Dr. Welby or the handsome and involved senior resident in "Medical Center"? Should the medical treatment provided by competent physicians have to be evaluated by patients in the context of the broadsides of misinformation with which consumers are deluged by today's mass-media advertisements and programming? While lack of the necessary information and other factors may prevent patients from exercising consumer sovereignty in a free-market sense and while the medical marketplace needs to be restructured, certain institutional roles for consumers can be considered in order for the consumer's voice to be properly heard. This involves a commitment by those controlling the various delivery systems to work toward consumer representation in the decision-making process. We should consider a variety of ways to secure that representation: i) To the extent that Professional Standards Review Organizations (PSRO) are established and operate, consumer interests should be *For example, in January 1975 Conlsumer Reports noted that one company which manufactured a particular drug sold it to four different drug companies. These four companies then sold it to drug stores under four different brand names at four different prices. Physicians who prescribe this product under these brand names may cause patients to pay from $11.40 to $31.74 per 100 for the same product.
Vol. 52, No. 1, January 1976
5
0
50
R. H. KARPATKIN R. H.
KARPATKIN~~~~~~~~~~~~~~~~
represented in these, and all records and findings should be subject to public scrutiny after establishing the necessary safeguards for confidentiality. 2) Institutions which pay for medical care (such as the giant Blue Cross) should be charged with the responsibility for promoting consumer interests in regard to the control of costs and the quality of care. Institutional reforms should assure this. It has been suggested that such plans-like suggestions for the reform of utilities-should include the financing of an independent consumer advocate to review requests for rate increases and to represent the consumers' interest before regulatory agencies. 3) In the i96os the concept of citizen participation in public life flourished, most notably in the field of education. Some businesses in the United States are taking steps to assure the representation of nonbusiness interests on boards of directors. Geniune consumer representation in the decisions of institutions and agencies providing or affecting health care would result in a more responsive and just system. Consumer representatives, of course, would have to be consumer advocates. Such participation would have to be believed in, subsidized, and respected by the agencies and institutions. It would need the kind of technical support which would render lay participation in professional areas meaningful. Various models for participation, which relate to the form and purpose of the institution involved, would have to be developed and evaluated. 4) Finally, so many decisions in medical care are made by the federal government, through both legislation and regulation, that medical consumers, like all consumers, would be aided by a governmental agency for consumer advocacy-a voice, not a power, which would present arguments, ask questions, gather data, and try to redress errors of law in the interest of consumers. While increased knowledge and participation on the part of consumers may not transform any system of medical care, it can become part of a process in which the quality of care can be improved, standards of quality can be articulated, and performance can be assessed to satisfy the interests of consumers. The participation of consumers will assure that our feedback from consumers is institutionalized, that the grievances of consumers are processed, and that we shall move in the direction of a more patient-oriented and just system. Bull. N. Y. Acad. Med.
