Health information for all
George A. O. Alleyne
Mr. President, distinguished participants, ladies and gentlemen. First let me repeat the warm welcome given by his Excellency President Figueres. There could be no better person to inaugurate over this Congress. We know the interest displayed by President Figueres in health and having read the presentation he made in the World Bank-Canadian Conference on Global Knowledge that took place in Canada about one year ago, we know his commitment to the use of information for health. That conference was one of the more successful ones that explored the role of knowledge and information in sustainable development: I interpreted much of the discussion as being geared to the possibilities of the use and usefulness of knowledge for economic growth, with much emphasis being placed also on the social aspects of what was defined as development.
This evening I propose to address the relevance of information to another aspect to the well-being of individuals and societies -their health. I wish to examine the role information will play in the achievement of Health for All and not only the possibility of information about health -personal or collective-being made widely available and, in some measure, available for all.
There is now a high comfort level with the concept of Health for All. Twenty years ago the World Health Organization challenged the various parts of the world's body politic to find mechanisms for reducing the intolerable burden of illness that afflicted large numbers of people. There were of course loud cries from cynics and Cassandras, who pointed out that the utopian state would never be reached and much time was spent and wasted in debate over the possibility of achieving the goal and the relevance of its Primary Health Care Strategy. This strategy that was indeed beautifully crafted, was perhaps questioned because of its simplicity which sometimes hid the difficulties that lay behind its implementation.
Now twenty years on, we are putting it to the world that there should be a renewal of our commitment to the noble goal. The position is being articulated much more clearly and I hope more eloquently that Health for All represents a call for more social justice. It represents the notion that there are health situations that still should not exist, that there are health inequities that are within our power to correct, and that we have the means to do so.
This call for renewal of Health for All recognizes the great advances that have been made in spite of the many difficulties that have had to be overcome. In the Region of the Americas we have seen an improvement in many if not most of our health indicators. Our citizens live longer, fewer children die, and fewer mothers die as they give birth. Many of the infectious diseases are on the wane and all-repeat all-are concerned about providing health care for their citizens. Potable water is more widely available.
But this record of progress is tempered by the realization that there is so much more to be done. The fact that some sections of our populations are marginalized and have health indicators that shame us shows what must be done. The reappearance of cholera in some of our countries in epidemic form as a result of El Niño's ravages, shows the fragility of our systems and their inability to respond when they are stressed. The problems of violence, sex or gender determined ill health in women, mental health and the health damaging behaviur of adolescents are just few of the areas in which we need to advance with the tools we have.
Much of the current economic dogma enshrines the notion of inequality. Charles Handy in his bestseller The Age of Paradox, points out one of the paradoxes of our political and economic system. "Capitalism depends on the fundamental principal of inequality; some may do better than others, but it will only be acceptable in the long term in a democracy if most people have an equal chance to aspire to that inequality." He adds, "This is a no-win world, and unintended." I would propose that there are some areas of our life in which this view may be tempered, and health is one of them.
While it appears that gradients of health status or rather health outcomes seem to be omnipresent, health as a whole is one area in which we do not have to accept a zero sum or no win world. Improving the health status of others does not detract from ourselves and perhaps allows us to act as Adam Smith argues in his less well-known work on a Theory of Moral Sentiments. He begins that work with the following: "How selfish soever man may be supposed, there are evidently some principles in his nature, which interest him in the fortune of others, and render their happiness necessary to him." He argues that stability in a society must be based on "sympathy", and I would extrapolate to say that to be our brother's keeper in health satisfies that sympathy and in addition is in our self-interest.
In May of this year the World Health Assembly will, I hope, accept the declaration that we should renew our commitment to that goal and endorse the proposal that is being put by the Secretariat after wide consultation with many countries, groups, organizations, and individuals.
The proposal examines the origins of Health for All and emphasizes that as originally conceived it was a "process leading to progressive improvement in the health of people and not as a single finite target." The renewal of the Health for All goal takes us into the 21st Century and acknowledges the gains of the past on which we should build. The major obstacles to more rapid progress have been identified through a series of evaluations and high among these obstacles are a perceived lack of political commitment and the low status of women. The slow economic growth in some parts of the world has hampered the process, and difficulty in achieving intersectoral action remains a problem to be solved. There has been inadequacy of health promotion activities and weak health information systems. The evaluations also pointed out the inappropriate use of, and allocation of resources for high cost technology.
Any renewal of Health for All must take account of the major trends that will influence health such as globalization, environmental and industrial changes and the changing role of the modern State. In this latter context we note that there is increasing clamour to reduce the size of the State and permit the participation of other parts of society in the governance that was formerly the unique province of the State and its apparatus.
The proposal identifies the new bases for action and emphasizes support for some key values such as human rights, equity, ethics and gender sensitivity. Goals and targets are established as benchmarks against which progress will be measured. The role of the World Health Organization in supporting the renewal is clearly delineated. Among the policy bases for action, special attention is given to the actions needed to make health central to human development. This last point is critical as it in essence enjoins the health sector and us who have some responsibility for policy action in it to be much more aggressive, vocally and programmatically in our relationship with those other sectors that have been in the past seen as more important for enhancing the well-being of our citizens.
I know that this view finds a ready echo here in Costa Rica, where you have shown to the world how the genesis of ideas for human improvement is not determined by the size of the country. Your clear and firm manifestation of the political will necessary to insure that health finds its rightful place in the political arena has always, and I trust, always will merit special recognition and appreciation.
The proposal for renewal of Health for All is a positive and optimistic one and many of the tools to implement the primary Health Care strategy are indeed available. But I wish to emphasize here the critical role of information in the process and show how gatherings like these of information specialists must see their work in that context.
I continue to hold firm to my perception of the value and power of information to effect many of the changes we wish to see. If I may quote myself, I spoke once of, "that most powerful of modern instruments -information - perhaps the only instrument that can close the gap between the world that is and the world that might be-the only instrument that can relieve the ignorance in the coin of ill health and suffering."
I am obviously not alone in this appreciation. George Will, a columnist, wrote in the Washington Post some years ago:
Life is increasingly regressive because the benefits of information are distributed disproportionately to those already favoured by many advantages. The more certain kinds of information matter, the more unequal society -life- becomes.
I will argue that in the area of health it may be possible to change this by deliberate action and perhaps make life progressive.
Before I go further in elaborating the actual uses of information I should speak briefly about information as a resource -something that is important for our daily living and being. Our primitive forefathers observed the world around them and internalized those facts which they digested and used the knowledge thus acquired for taking decisions. It is evident that they found means of communicating the information by word or other forms. I take this communication to reflect the pristine meaning of the word - to share with others. This basic process has not changed. The technology and skill available for data gathering has changed, there are now more sophisticated methods for analyzing these data, and the means by which this information is shared or communicated is more unrecognizable by the minute. Every one of you here is old enough to appreciate this change in the technology available to us for analysis of data and for communication over the globe. This technology allows us to collect, analyze, store, and retrieve information at speeds and costs that were unthinkable a few short years ago, and the convergence of computer and communication technological advances and the plummeting costs have revolutionized the way we behave. But the essential element of the process, the internalizing of information such that knowledge is created, is a human action that has been the same since mankind became sentient beings. It will remain so. I am not afraid of the intelligent robots that will be able to store and act on the basis of millions of bits of data. Computers may win chess games, but they do not and will never have the knowledge of having done so.
In his book on the Internet, Telematics and Health, Marcelo Sosa writes of information as the cornerstone of medical sciences and pays tribute to that information giant Dr. Héctor Sosa Padilla, who was a pioneer in assisting PAHO in development of information systems. Dr. Sosa Padilla is quoted thus:
The systematic aggregations and structuring of data in space, time, subjects and objects... in the context of decisions that should be taken is what constitutes the true information for the planner, the legislative body, the managerial level or the technician.
I will constantly stress the fundamental difference between information and knowledge. The creation of knowledge is a highly personal matter and I am to be convinced that we ever transmit knowledge as such. Thus, our Organization cannot be a knowledge organization, to use a popular expression. It is our staff that carry out their tasks on the basis of the knowledge gained from information that has been processed over a lifetime and that knowledge is indeed their most treasured asset. The distinction is not epistemological; it is real in terms of how we function and the tools with which we work. You are information specialists and it is your knowledge of how to use that information appropriately that makes you valuable.
Information thus conceived is crucial to the attainment of Health for All. First there is the basic need for information about the health situation. It is a sad fact that in many instances our capacity for transmission of information far outstrips our ability to collect basic health data. Fascination with computers has perhaps deviated us from the mundane but important task of collecting vital statistics. The unreliability of data from death certificates is notorious although this has been one of the time-honored sources of information on health conditions.
It is not enough to decry the lack of basic data that can be analyzed. It is an old truism that if data are not useful or used they will not be gathered and therefore not be analyzed to produce information. It is a fundamental tenet of Health for All that there be more equity - less unjustified inequality. Even if we leave aside for a moment the subjectivity implied in the concept of "unjustified", it is clear that there must be a system for determining the existence of such inequality. We are all familiar with the false comfort given by averages for countries. Our thrust is to have data collected from ever smaller geographical units such that there can be appreciation of the inequality that exists not only among but also within countries. My annual Report for 1996 stressed this and highlighted those methodological approaches needed for this discriminatory approach, and the technical cooperation directed towards strengthening the capacity of countries to collect and analyze basic health data. That report analyzed the health situation in the Americas from the perspective of the health of geographically defined spaces. This type of approach gives a picture of the situation, but also allows countries to measure the effectiveness or otherwise of the interventions they put in place to reduce the inequities.
But in addition to the information about the state of health itself, it is necessary to have information about the determinants of that status, and the health sector itself is increasingly collecting or gaining access to information that may appear to be in the province of another sector. It is important to know of economic and social trends if we wish to interpret health data. It is important to have information on the educational attainment of our populations, and no analysis of a health situation is complete without information on environmental conditions. Information on the mega tendencies such as climate change are important for the long-term view, but the more urgent need is for information on the micro environment that has a direct and immediate bearing on health.
Information must be provided to those who make decisions and often we think only of the truly political actors and not of the other publics. It is in this area that the information needs of Health for All are most acute. If we take the matter of health promotion which is an important aspect of Health for All, the impression is often given that the creation of healthy public policy, which is a cornerstone of that movement, rests primarily with generating knowledge through information conveyed to policy makers. But it is obvious that public policy will be made healthy or healthier if there is sufficient clamour from the general public as a whole or in organized groups. The shift of attention and resources from curative care to promotion and prevention will not take place solely by the actions of well-intentioned disinterested policymakers. Similarly, the dampening of the seemingly limitless demand for individual care will not be possible without the involvement of an informed public. Unless there is an informed and involved public, we will always be slaves to the old adage - "an ounce of prevention is better than a pound of cure as long as there is nothing to cure."
As I pointed out initially, I have deliberately not addressed the issue of having health information available to all, as I spoke briefly about that at the last Congress. It is becoming more of a reality that persons are seeking information about health in general from others beside the traditional health workers, and the various means of communication are replete with information about numerous aspects of health.
It is in this context that I posed the question earlier whether the access to information that would facilitate a healthy state or avoid an unhealthy one would lead to some persons or groups being disadvantaged. This is a complex issue as it is not only access to the information, but the means of acting after that information is internalized to knowledge that poses difficulties. The willingness to pay the true cost of taking one or other decision is influenced by other factors beside the wisdom gained from knowledge. There are also exciting new developments in patient monitoring, automation of records, and space-age technology for data capture that will enhance information use. The world of telematics with its emphasis on data transfer is bringing new possibilities such as telemedicine to countries that have the infrastructure in place to take advantage of them.
What can I expect from you as information specialists? Three years ago I said to a similar gathering:
I look for the day when you will be judged not by the information you have stored but by the numbers who share that treasure with you.
That sentiment is equally true today and I repeat this with particular reference to Health for All and the networking that allows easy access to material related to Health for All. First the deliberations and the proposals of the World Health Assembly must be widely disseminated. The health sector and non-health sector personnel must know that the countries have agreed to recommit themselves to that goal. Next, health sector professionals must have access to the information to make them more competent in their work. Researchers, practitioners, students must have access to the databases on health situations in their and other countries. You must not only know of the location of the information and wait to be asked - you must be advocates for the use of the information to which you are privy. It is not only information on population groups that forms the basis for public health enquiry and action. There will always be need for information about the problems or illnesses of individuals. You as information workers cannot and must not make judgement about the need to collect and store information for individual or population health. Both are important.
You must be among the leaders in your countries in educating the health and non-health sectors of the availability of information that hopefully will engender the formation of knowledge and guide decisions. I stress the universality of access, because it is no longer permissible for you to restrict the use of information to those whom we traditionally refer to as specialists in their field. You have a responsibility to see that information that should be in the public domain is not guarded by one special group and forms the mechanism by which that group maintains some measure of superiority.
I urge you to give particular attention to providing information for the research that must provide answers to many of the questions that still remain to be answered. A great deal has been written about the research needs of Health for All, but a recurrent theme is to make relevant information available as widely and as rapidly as possible. I recall an old paper by Eugene Garfield in which he likened the spread of scientific information to an epidemic. There was a definitive host - the researcher and the publication is the intermediate host for the infectious material which is information. Part of your responsibility is to facilitate the spread of this infection although I would not go so far as to call you vectors. Of course there is the concomitant responsibility to see that your clients are not so surfeited that they become mentally obese and paralyzed through information over nutrition which would be just as bad as having them waste away through information starvation.
You are privileged to be in this field when there are numerous efforts to liberate information from shackles that are more mental or conceptual than physical or technological. I participated recently in a panel convened by the National Library of Medicine of the United States to plan its international programs. As progressive as that institution has been, it recognizes that it is in the midst of a rapidly changing environment. The panel emphasized the need to "expand efforts in global health information networking." Networks represent the key, and although there may be economic, physical or political barriers at present, these are all being eroded and the vision is of a confederation of international centers of medical information. The quantum of global health information is increasing at an amazing rate and the only way to deal with it in any rational way is through networking that employs the ever-increasing capabilities of the Internet and the World Wide Web.
You will have the support of PAHO in your efforts. You and the institutions you represent belong to the Latin American Network and over the years you have made significant progress in harmonizing practices and procedures. I am always concerned that our support to countries be appropriate to their needs, so last year I appointed a committee to advise me on our technical cooperation in the area of dissemination of scientific technical information in health, with emphasis on the Latin American and Caribbean Center on Health Sciences Information, BIREME, and the Regional network. This committee visited BIREME, institution in Brazil, and other countries of the Region and met with me and my colleagues in Washington. In summary the recommendations of the Committee were that there should be consolidation and strengthening of BIREME in its role as the coordinating center for the Latin American and Caribbean Network for Health Science Information. The Center should be in a position to attend to the new demands and new users that arise from the scientific and technical developments that are taking place. They also recommended that BIREME work towards the creation of a virtual library and you will hear more of that proposal during the Congress.
I have accepted the recommendations of the Committee and look forward to your reactions to the proposal for the creation of a virtual library. I am convinced that this is the way of the future and my participation in the NLM panel has shown me that this type of advance is absolutely necessary if scientific and technical information in health is to be the resource that you all wish. This is the proper move to the democratization of information that is needed for Health for All.
In PAHO we will continue to emphasize the need to make information available to our various publics. We will continue our tradition of making scientific publications of the highest quality available to the health workers in the Americas and a program of sustained marketing has made them known in places that they had not previously penetrated. You will have no doubt noticed the publication of our new Journal of Public Health that represents the condensation and replacement of several other periodicals and I believe that the new product has combined all of the good points of its predecessors. Our new news magazine Perspectives combines words and images in a creative and attractive manner to bring key messages about health to a wide readership.
Information and its use or misuse has been a major underpinning of many of the great movements of history. The circulation of information has been crucial to the development of the health sciences and the improvement of the health throughout the ages. It has always been so; it is part of your responsibility to see that it continues to be so. But I can promise you that although your responsibility is a constant, none of us have any real idea of the future in which that responsibility will be discharged. The hope I have is that joined with the responsibility is a willingness to learn and adapt to the inevitable changes in concepts, procedures and practices that will occur. You owe this especially to those for whom Health for All means a vision that can be transformed into reality and not a pretty slogan coined by the more fortunate.
Let me end by quoting Halfdan Mahler as he challenged the World Health Assembly 10 years ago. He said:
To steer the movement of Health for All towards the year 2000 and beyond requires dedicated leadership. That leadership is required not only at central levels of government; it is needed at all levels of organized society, and in all walks of life. To provide that leadership people are required whose ennobling ideas and words, and personal example fire the imagination of others and give rise to inspired actions.
I hope I can count on you to exercise that leadership in your respective places of work.
I thank you.