Introduction
New technologies can lead to social upheaval and ethical dilemmas which are unrecognized at the time of their introduction. Medical care technology has advanced rapidly over the course of the past two decades and has frequently been accompanied by unforeseen consequences for individuals, the medical profession and government budgets, with concomitant implications for society and public policy (Magner, 1992; Marti-Ibanez, 1962).
Advances in information technology (IT) during the last decade and a half are now impacting the medical profession, and the delivery of medical advances, in ways that will impact public policy debates for the foreseeable future. The World Wide Web (Web) makes information that was once the eminent domain of medical professionals available to average citizens who are increasingly demanding medical treatments from the leading edge of medical technology. For example, CenterWatch (www.centerwatch.com) provides a wealth of information concerning clinical trials and offers a conduit by which patients can become involved in such studies. The availability of such information has also led to patients suffering from life-threatening diseases not part of such clinical trials to request special access to potentially life-saving therapies. As a result, the Web is increasing the complexity of answering public policy questions surrounding what medical technologies to make available to the public, who will be eligible to receive new medical treatments, and at what cost.
background
In medicine, it has traditionally been the medical practitioner who has possessed the greater breadth and depth of information and knowledge in the provider-patient relationship (Magner 1992; Porter 1992; Robinson 1931). This condition, where one party has more information in a transaction than another party or parties (relative to the transaction), is known as information asymmetry. The existence of information asymmetry, in many transactions, has created the need to develop public policies to protect the interests of parties with less information (Akerlof, 1970; Hellwig 2001; Nayyar, 1990).
The risk of false advertising, the presence of disclaimers for contests, the existence of lemon laws for cars, and insider trading laws all attest to the need for societies to establish guidelines to handle the ethical issues which can arise from information asymmetry. Public policy has been designed to protect medical services consumers from the potential deleterious effects of information asymmetry (Akerlof, 1970; Hellwig, 2001; Milgrom & Roberts 2001). Specifically, it has dictated that doctors and other medical professionals be licensed in the nation, state or province in which they practice (Davies & Beach, 2000; Digby, 1997; Fournier & McInnes, 1997). Laws governing the practice of medicine, and what is acceptable and legal in the course of treatment and medical experiments have been developed. Oversight boards have also been established to ensure healthcare providers offer care in accordance with standards of care (Fournier & McInnes, 1997). Such precautions are intended to increase patients’ confidence in the care being provided, even under the yoke of information asymmetry. The precautions do not reduce or eliminate the presence of information asymmetry.
A commonly held belief is that information parity, and information access that moves parties in transactions toward parity, is the cornerstone for the elimination of the ethical quandaries introduced by information asymmetry (Akerlof, 1970; Diamond, 1984; Hellwig, 2001). Until recently, medical information has presented two problems for the lay person: accessibility and comprehensibility (Ghalioungui, 1963; Marti-Ibanez, 1962; Magner, 1992; Porter, 1992; Robinson, 1931).
Accessibility refers to the opportunity to find, as well as the ease and convenience associated with locating, information. Medical journals are expensive, and prior to online libraries, many university libraries prided themselves on the expansiveness of their collections of journals.
For a patient with a medical problem, or a family problem, a primary constraint was the ability to locate and access the salient medical information dealing with the problem. If the patient did not live in a town with a medical school, he or she would have to depend on the local library’s often sparse repository of medically-related offerings to search for relevant information. Generally, assuming the patient could identify an appropriate source of information, it was not locally available (Digby, 1997; Matthews, 2000). This would necessitate relying upon the availability of inter-library loan or a trip to the library that held the sought-after text or journal. More likely than not, however, the affected patient would not have the ability to reference such medical resources. Most commonly, the patient’s knowledge of medical treatment options was limited to that offered by a medical care provider, word-of-mouth, or from popular press publications. Historically, lack of information accessibility has been a powerful protector of information asymmetry.
Even if patients could locate and access relevant medical information they were still faced with the problem of comprehensibility. Medical journals are written for an audience with a minimum understanding of biology, chemistry, physiology, anatomy, biochemistry, and pharmacology. There is a requisite base of knowledge for understanding medical texts and journals, and much medical literature is written for an audience with specialized knowledge of a particular field of medicine. For the lay audience, such literature is virtually indecipherable.
With the practically insurmountable twin problems of accessibility and comprehensibility, patients received most of their medical information through the filter of the physician. Few physicians could be considered members of the avant garde. Consequently, patients were more than likely to learn only of medical therapies with which their physicians were familiar (Marti-Ibanez, 1962; Porter, 1992; Robinson, 1931). Thus, information on progressive treatments not approved for use, or uncovered by medical insurance, would not be widely disseminated to the general public through physicians. Further, licensed physicians familiar with such treatments would face numerous legal hurdles to providing information regarding experimental or unapproved medical therapies.
Developments that have reduced information Asymmetry
In the twentieth century, information on many medical and scientific advances was made available to a large cross-section of the population via print and electronic mass media. However, the availability of such media outlets did not significantly alter the level of information asymmetry between the patient and the medical practitioner. First, national oversight of media outlets limited their ability to report on medical treatments and breakthroughs not licensed in that particular country (Barry & Raworth, 2002). Perhaps, just as importantly, mass media tend to report on items of broad interest to their constituents. Esoteric medical discoveries of interest to a minute segment of the population were less likely to garner much media attention. This dynamic has shifted radically since Tim Berners-Lee’s creation of the World Wide Web in the 1990s. With this innovation, the barriers to information symmetry in medical information have eroded, albeit imperceptibly at first.
The Web facilitates global access to medical information without regard to national laws or availability of treatment. The filter on medical information provided by physicians (i.e., national governments, regional health boards and media censors) was removed, and patients could access information at a rate nearly commensurate with their physicians’. Patients are made aware of new and developing medical treatments rapidly via such online outlets as CenterWatch and Clinical-Trials.gov (www.clinicaltrials.gov). ClinicalTri-als.gov is a service of the U.S. National Institutes of Health. Numerous Web sites are also dedicated to alternative medical therapies for a variety of illnesses. Yahoo! Health provides a starting point for identifying potential alternative medicine resources (dir.yahoo.com/Health/alternative_medicine). Individuals are thus free to decide which medical innovations interest them, and then seek information on them.
The information availability barrier to information symmetry has been significantly reduced, leaving the difficulty with comprehensibility as a challenge to information parity. The Internet and Web, however, allow motivated individuals to locate multiple presentations of information on the same medical innovation in an effort to identify an intelligible (to them) presentation of the information. E-mail, online chats, text messaging, personal computer (PC) based video conferencing and inexpensive long distance through voice over IP (VOIP) facilitate the ability of communities of consumers sharing similar medical conditions to pool their intellectual capital in an effort to interpret the extant information on a medical innovation and to reduce that information to the lowest common denominator of intelligibility. Wikis constitute a powerful tool by which all kinds of, including healthcare, information is being disseminated. A plethora of healthcare topics ranging from the flu to HIV are available. One of the advantages of wikis is the fact they are developed and edited by online communities of users. Consequently, even conceptually difficult and technically rigorous knowledge bases can be interpreted and presented in a non-technical manner understandable to a broad readership. As a result, the second barrier to information symmetry continues to be reduced.
Technology has created a reduction in asymmetry (RIA) between the medical professional and the patient. Where the patient in the office of a medical professional once considered the practitioner before him to be the expert on the treatment of a condition, it is now feasible for the patient to have more information on the available treatments than the attending physician. The rapid advance of medical innovations and the volumes of information associated with each make it virtually impossible for a physician to be an expert on the entire spectrum of possible treatment options. Further, many medical therapies are experimental and will not find their way into mainstream medical care or even be approved for use for years. While a physician may have a passing familiarity with such therapies, it is unlikely he or she will have a strong motivation to become expert on them. A patient with a particular malady, however, not only has great incentive to research that condition and all treatments, including those that may currently be unapproved or categorized as experimental, but the Web also provides a means by which he or she can do so.
Online communities for particular maladies offer their sufferers a means of support in coping with their illnesses. Arguably, such communities provide a variety of informational and emotional support. ProHealth’s ArthritisSupport.com (www. arthritisSupport.com) provides an example of such an online community. It provides a full range of information and support for sufferers of both osteoarthritis and rheumatoid arthritis in the form of online chats, message boards, coping tips, clinical trial and drug information, physician selection, as well as information related to disability claims. The existence of such communities demonstrates the power of the Web to bring patients with similar interests together for their mutual benefit in terms of support and a reduction in information asymmetry.
New Research issues
The supposition of information asymmetry research (e.g., in economics and finance) is that the efficiency of markets can be improved by diminishing the level of asymmetry in transactions (Akerlof, 1970; Milgrom & Roberts, 2001; Payne, 2003). Further, research and public policy is predicated on the commonly held belief that information parity, and information access that moves the parties towards parity, is the cornerstone for the elimination of the ethical quandaries introduced by information asymmetry (Akerlof, 1970; Cowles, 1976; Diamond, 1984; Hellwig, 2001). However, movement toward information symmetry in the patient-provider dyad creates a number of issues that have implications for public policy makers, a sample of which is discussed here.
A significant issue with patients having unfettered access to medical information is that the information available online is not limited by geopolitical boundaries. The Web provides information on pharmaceuticals, treatments, innovations, technologies and facilities that may not be approved for use in the patient’s home country or region. Large numbers of patients who desire and demand locally unavailable treatments place pressure on policy makers to examine the possibility of making such treatments available, perhaps prematurely. In some cases, pressure may mount to make a treatment available even if the long-term effects and efficacy of the treatment are uncertain.
Policy makers are placed in the position of determining whether to relax standards by which treatment options are evaluated prior to their release for public consumption. Already, we have seen mechanisms put into place to make investigational new drugs (IND) available to certain patients on an emergency, individual, or compassionate basis. The Regulatory Affairs Professionals Society (www.raps.org) is an organization dedicated to the health product regulatory profession with members from 50 countries involving industry, government, research, clinical, and academic organizations. Such organizations are intended to serve as a resource for information and education for those involved in the regulation of the healthcare sector.
Budgetary constraints frequently dictate the availability of medical therapies, particularly those that are new and expensive (Barry & Ra-worth, 2002; Schwartz et al., 1999). In nations with privatized healthcare, insurance companies may refuse to cover such treatments in favor of less expensive alternatives, or require the insured to pay a higher co-payment. In societies where healthcare has been nationalized, budgetary constraints are particularly troublesome since decision makers must allocate scarce medical resources either regionally or nationally. Consequently, even approved medical treatments may not be available in a particular area, or may be rationed (Barry & Raworth, 2002; Schwartz, Morrison et al., 1999).
Thus, if exogenous information enters the system and creates demand for a particular form of care, patients may seek a mix of healthcare alternatives unanticipated by medical boards. Conversely, citizens may not seek care in the volume expected by medical boards at particular locations. Consequently, resources may be over-allocated in one area, and under allocated in others. In situations where RIA leads patients to treatments which may be available in another country, the unanticipated current year expenditure to cover the extra-national treatment must come from existing budgets. Thus, funds budgeted for the current year for intra-national treatments are unavailable, and some must do without or a deficit will result. Additionally, allowing those on a long waiting list (or those excluded from the waiting list altogether) to jump ahead in the queue for treatment elsewhere, encourages those with low priority in the queue to find alternative treatment avenues.
Another serious issue may develop with patients’ easy access to medical professionals in other countries. Scenarios exist where a locally unavailable treatment is available elsewhere and discussed with a patient. Patients may become well informed of the side-effects, efficacy, and benefits of a wide range of treatments not available to them; nonetheless, they will seek these treatments. When they learn of the treatments’ unavailability they will demand the treatment be made available to them, or they may seek illegal means of acquiring the therapy. Online sources of certain medical services and therapies are a likely means by which to circuitously avail oneself of desired medical treatment or pharmaceuticals. E-pharmacies, for example, represent a possible conduit for the improper dispensing or illegal sale of drugs in a region or country. The challenge, here, resides in how to allow the online healthcare provider to continue to offer valuable services while ensuring the source is not abused.
The rapid rise of online communities, healthcare wikis, and other Web-based medical information sources leads to a number of important issues that need to be addressed. One such issue revolves around the accuracy of the information provided to patients via such conduits. How can we assure the veracity of the information? This is a particularly relevant question when considering user-developed informational sources such as wikis. In a wiki, the information’s accuracy is assessed by the users themselves. Consequently, it is possible that conceptually difficult and technically rigorous information may be incorrectly interpreted and consolidated by users. Thus, the simplification of information may pose certain dangers to its potential consumers. Further, concerns exist with respect to online articles targeted toward specific drugs or medical therapies. How can a user of such information be assured of the information’s quality? In traditional print media, we can rely, to some extent, upon an external review process. This quality check, however, is less certain in online arenas.
Another potential danger of the ubiquitous availability of medical information is information overload. What are the potential deleterious effects of information overload? It may be possible that this information overload may contribute to patients’ increased confusion regarding medical conditions and available treatment modalities as opposed to alleviating such confusion. Many patients arguably make decisions concerning their healthcare, at least in part, based on the information they find online. Consequently, what is the legal culpability of the purveyors of such information when patients make decisions that are detrimental rather than beneficial to their medical care on the basis of said information?
Another relevant issue that must be addressed is the degree to which governments are responsible for controlling and disseminating available information to their citizenries. In what types of information campaigns should governments engage? The answer to this question may lie to some degree upon national cultures as well as the nature of the government in question. With the wide availability of information sources that link online users to mainstream medical modalities as well as those considered to be alternative medical modalities, some governments provide advice with respect to using such sources of information. For example, the National Center for Complementary and Alternative Medicine (www. nccam.nih.gov) in the United States provides links to its Web site visitors that explain complementary and alternative medical therapies in an effort to better educate medical consumers. The Australian government also maintains an internet presence to better educate its populace and to provide links to medical information through its Department of Health and Ageing (www.health.gov.au) as does the UK through the Health and Well-Being section of its DirectGov Web site (www.direct.gov.uk/HealthAndWellBeing/fs/en).
Since many governments attempt to provide their citizens access to relevant health-related information, two important issues arise: (1) at what point does government responsibility end and (2) are less educated or technically aware citizens exposed to increased information asymmetry. The first issue does not arise strictly from RIA, but does pose an interesting policy issue. The response to this issue will clearly vary depending upon the nature of country’s society (e.g., socialist versus capitalist). The second issue also poses interesting policy implications that are directly related to information asymmetry.
If we assume that lower income and/or educational levels contribute to less access to Internet-based information technologies for individuals, then is it reasonable to assume that these individuals are subject to traditional levels of information asymmetry? Consequently, we can expect RIA gaps to vary widely across the citizens within and between countries. As a policy issue within a country, then, the problem that must be addressed is how to halt the growth of, and reduce, RIA gaps. How can a society reduce the educational disparity that results from differing socio-economic statuses? And, assuming such a disparity can be appreciably reduced, how can that society grant equal access to the internet-based information technologies that have contributed so much to RIA?
future trends
Web technologies not only provide a means by which to increase information parity, but also repre sent a vehicle by which the scientific process may be compromised. Individuals participating in clinical trials can easily set up chat areas, news groups and email mailing lists to contact others in the same or similar studies. This allows participants to compare symptoms and progress, and may skew or completely thwart a medical study. Individuals in severe or chronic pain and those suffering from life threatening illness have great motivation to ensure they are getting the most efficacious treatment available. From the standpoint of public policy, however, this is problematic. While no one would argue that an individual does not have the right to seek the best treatment available for his or her disorder, altering the results of a clinical trial reduces the data available to determine what is best for an entire class of patients (Cowles, 1976; Digby, 1997; Matthews, 2000; Spilker & Cramer, 1992).
As Web access continues on its march toward ubiquity, the world’s better-informed citizenry will, through their behaviors and desire for increasingly sophisticated medical therapies, place increased burdens on the health systems of their respective countries. Policy makers will continue to see citizens insinuating themselves into the process by which societies allocate their scarce medical resources. Debates about what medical technologies to make available, to whom, and at what cost which were once held in the relatively isolated environs of governmental and insurance provider offices are increasingly being influenced by the special interests of a diverse group of Web-savvy citizens. We can expect to see continued growth in the number and sophistication of the forums by which such special interests are expressed. Consequently, not only will policy makers have to continue to make difficult decisions about healthcare delivery, but will also have to do so under the unforgiving lamp of public scrutiny. This will place a burden on policy makers to provide mechanisms by which public concerns can be effectively factored into the decision-making process.
We are already seeing pressure mount to make medical therapies such as complementary and alternative medical treatments and promising treatments not yet authorized by the FDA available to citizens of the United States through authorized health care practitioners. This pressure has resulted in the introduction of such proposed legislation as the Access to Medical Treatment Act to the U.S. House of Representatives. Such proposed legislation is strongly supported by special interest groups such as the American Association for Health Freedom (www.healthfreedom.net). Another example of the interest in allowing better access to experimental drugs is demonstrated by the Abigail Alliance (www.abigail-alliance.org). This Web site is dedicated to providing patients with life-threatening illnesses access to potentially life-saving treatments. Further, foundations such as the LiveStrong Lance Armstrong Foundation (www.livestrong.org) are highly visible sources of support and information for sufferers of life-threatening diseases. The call to action is clear. Public policy decision makers must be prepared to deal with the cries of their citizenry. Dynamically assessing an increasingly complex information environment with ever-better informed medical consumers is necessary. It is not sufficient to react to demands for better access to medical care; policy makers must proactively develop coherent policies and information campaigns to facilitate the flow of relevant medical information and care.
conclusion
This then is a microcosm of the problem facing public policy decision makers and society: Which is more important to society—individual medical treatment or the societal distribution of scarce medical resources? Is it in the public interest to allocate limited medical resources to those with the best information, or should medical professionals be trusted as better qualified to determine appropriate treatments and to prioritize patient access to medical technology?
RIA between patients and medical practitioners raises public policy issues which will affect the delivery of medical care for decades to come. It is unrealistic to think that persons or families facing grave illnesses will not seek all available information that may improve their lives or the lives of their loved ones. Whether it is paid by the patient, private health insurance or public funds from national insurance or nationalized healthcare, patients want the best and most efficacious care available. For most of these areas, RIA and increasing information parity reduces ethical, social and public policy issues. For the practice of medicine, however, RIA places physicians and governments in uncharted ethical and policy territory. An awareness of the issues that can be raised by RIA in this unusual circumstance can help the authors of public policy to prepare for social changes, and not be caught unawares.
future research directions
IT facilitates communication and can de-layer the communications path between medical researchers and patients affected with a specific condition. Future research could examine the use of medical information bulletin boards, chat room and virtual communities by patients to exchange treatment results. As a means of determining motivation levels of patients, the research could survey patients to see what research they have done on their disease or condition.
Future surveys could explore medical researchers and their experiences with control groups contaminated by the sharing of treatment results. Further, examination of physicians who recommended/submitted patients to participate in medical research can be conducted. The physicians could track the frequency with which patients ask questions indicating advanced knowledge of the study. The information could be combined with study information on the types of diseases being treated and ages of the patients in the medical study.
Future research could investigate the degree to which non-hospital treatment centers assist in the dissemination of medical information. Many of these centers are staffed by nurses, not physicians, and may act as an additional layer of filtering for information to the patient.
A study of the correlation between Internet access speed and the questions posed to physicians could help in understanding the impact of broadband access on the RIA. Further, a correlation with income could disclose if a digital divide is forming in medical care. If information concerning medical studies and treatment options is readily available to those with computers and Internet access, but the same information is less readily available to non-computerized patients, medical studies may be weighted towards the wealthy and technically savvy.
Future research could explore the creation of a clearinghouse for researchers to report tainted studies. In this way, the medical and IT communities can determine the degree of medical research contamination. Ethics researchers can explore and debate the future of the physician-patient interaction, and how this will change as physicians lose their monopoly on diagnosis and treatment options. Public policy researchers can explore the legal options which may be necessary to ensure that medical treatments are equitably available. Public policy researchers can also examine the necessity of maintain laws which limit the discussions physicians can have with their patients, in the face of internationalization of medical technology information.
Future research could also explore other areas in which RIA produces greater ethical issues for one of the parties. As information technology becomes pervasive, it is likely that other fields will discover that RIA does not always lead to more efficient markets. This understanding will allow researchers to identify situations in which RIA leads to greater moral dilemmas, not a reduction in ethical considerations.
key terms
E-Pharmacy: A term that refers to the existence of an online pharmacy that offers medical care providers the ability to prescribe medications for patients online. These medications can then be delivered to patients without ever requiring them to leave the confines of their homes. In some, cases pre scriptions can be filled without a physician ever having physical contact with the patient.
Ethical Issue: A situation where the decision maker is required to weigh values and employ judgment in reaching a decision. Frequently, this is a situation which is outside of, or different from, those with which the decision maker has previous experience.
Information Asymmetry: A situation in which one party has more information in a transaction than another party or parties, relative to the transaction.
Information Parity: As situation in which both parties in a transaction have equal information related to the transaction.
Information Accessibility: The opportunity to find, as well as the ease and convenience associated with locating, information. Often, this is related to the physical location of the individual seeking the information and the physical location of the information in a book or journal.
Information Comprehensibility: The ability to comprehend and utilize information once located. Comprehensibility, if the information is syntactically and grammatically correct, is often dependant on the preparation and training of the individual accessing the material.
Locally Unavailable Treatment: Medical treatment which may not be available in a nation or region for economic, regulatory or technical reasons. The treatment may also be limited by law or administrative actions.
Reduction in Information Asymmetry (RIA): Reducing the disparity in information between the parties in a transaction, relative to the transaction.
