AHA Policy Forum

Information Empowerment for Health Care Consumers
Issues and Recommendations
for
Hospital, Health Systems, and their Associations

AHA Strategic Policy Planning Committee
January 3, 2001

Approved for Distribution to and Discussion with the
Membership
AHA Board of Trustees
January 23, 2001

Preface

The present transition in the world economy is often described under one of two labels: the "Information Economy" or the "Internet Economy." Both labels appear accurate, and each is helpful in thinking about the swirling changes in the economy.

As the AHA's Strategic Policy Planning Committee (SPPC) has discussed the implications of the changing economy for health care, we have concluded that the implications of the information economy are broader than those of the Internet economy. Certainly the Internet is highly visible. But, at its core, the Internet is a means of exchanging information. The greater changes are the availability of information, its use, and its impact on historical relationships.

Within the changing information economy, hospitals and health care systems are internally impacted at several levels:

· information previously available to only a few staff can now be widely accessed through the organization,

· information previously held by other organizations, including vendors and payers, can now be accessed readily by hospital staff, and

· new legal frameworks-the Health Insurance Portability and Accountability Act (HIPAA) in particular-are defining the processing, security, and privacy of medical information.

The information economy is also changing the relationship between the consumer ¹ and the health care system. Information is a fundamental building block of health care. Patients seek information about their illness and the alternatives for treating it. Practitioners seek information on the patient's condition to combine with their knowledge of diagnosis and treatment. Certainly, some health care involves a physical product such as a surgical procedure, a prescription drug, or a prosthesis, but vastly more health care involves gathering information, interpreting it, and making decisions using it.

The SPPC believes the changing relationship of consumers to the health care system brought about by information will lead to profound impacts that hospitals and their associations should be addressing now. The SPPC labeled this change "Information Empowerment" and selected it as one of three key issues to address in 2000 ². This report identifies the present trends and implications of consumer information empowerment that hospitals, health systems, and their associations should be addressing actively.

Information Empowerment

Health care is provided by a series of professions, including physicians, nurses, pharmacists, and therapists. Each profession requires substantial education. As a result, the professionals traditionally have had information not held by the general public. Across the past century, the public slowly has gained access to increasing information about disease and its treatment. However, physicians, nurses, and other health professionals have remained the primary repository of health care information, and patients have sought their services to gain access to the information.

Consumer access to health care information now is changing rapidly in three areas.

First, consumers have increasing access to information on clinical care. Consumers can purchase books and use web sites designed to provide understandable information on particular diseases and their treatments, on drugs and their side effects, and on clinical trials for specific illnesses. They can use a computer-based algorithm that interviews them for their signs and symptoms, suggests laboratory test or x-rays the patient should seek, offers a tentative diagnosis or suggests the type of specialist to see.

Second, consumers have increasing access to information on the health care experiences of others. They gather information by participating in in-person or on-line support groups. Local community support groups have a long history, and they often have been hosted or supported by hospitals or members of their medical staff. The Internet removes the confines of geography. The parent of a critically ill child can exchange experiences with a family having a similar child in another state or region. The chronic care patient can learn the experiences and preferences of similar patients throughout the nation. Many senior physicians recall the days when hospital stays were extended and when an inpatient culture of support groups developed among patients with a common diagnosis. The emphasis on short-stay admissions reduced the development of support groups among inpatients. Modern communications have returned the support groups through conference calling and Internet "chat" rooms. Today's virtual support group enables patients to collect ideas from a wide variety of communities and reveals the variation in practice patterns and treatment strategies.

Third, consumers have increasing access to information on the performance of health plans, hospitals and other providers, and practitioners. This includes published directories and "report cards." It also includes on-line data analysis and reporting services. While the health field has yet to experience the J. D. Powers of health care as it exists for information on automobile quality, the Strategic Policy Planning Committee expects a widely accepted service to develop.

Clinical information, virtual support groups, and performance information are rapidly reducing the information gap between the health professions and the publics they serve. Increased consumer access to information takes the health care system into uncharted territory. Some developments are clear; others are cloudy.

First, health services involve obtaining information, interpreting it, and making decisions with it. Consumers and family members seek information to:

learn about their own illness and its treatment options,
select providers, practitioners, and health plans;
improve communication with practitioners by having better questions;
use in shared decision making with practitioners;
make their own health care decisions;
simplify access to services; and/or
purchase health care goods and services.

Consumers are not homogenous in their interest in or use of information. However, there presently is no widely accepted system for categorizing consumers and understanding their medical information needs and uses.

Second, increased access to information is now continuously available, 24x365 as the saying goes. Patients with problems can seek information in the middle of the afternoon or the middle of the night. With no need to wait for information, consumers increasing expect to use the information immediately. They expect a health care system that is 24x365 in more than the Emergency Department. Access to information is stimulating demand for timely and convenient access to services.

Third, the historic advantage of practitioners and providers knowing information before patients is disappearing. Information immediacy is the expectation. Consumers have access to information simultaneously with practitioners and providers. Televised health information and the Internet increasingly provide consumers with up-to-the-minute results of scientific studies, drug introductions, drug complications, and new procedures. While the physician or nurse must attempt to remain up-to-date on the broad range of conditions in their practice specialty, the consumer may well have only one condition of interest. As a result, they use search engines and data bases to focus directly on their need. Learning in this highly focused way, patients arrive at appointments having read printouts of the latest information on their condition even before the practitioner may have received a professional journal with the corresponding article.

Fourth, there are few quality restraints on the information publicly available to consumers. Scientific and valid information appears as timely and authoritative as the newest folklore or unsubstantiated "miracle cure." For chronically ill or terminal patients unsatisfied with the ability of traditional medicine to help, the distinction between known science and unsubstantiated alternatives may be irrelevant. Faced with a prognosis they don't like, they may ask the health care system to employ the unsubstantiated, the hoped-for, even the speculative. This places providers and practitioners in the conflict of being responsive to the wishes of a patient while simultaneously having performance measured and reported according to their conformance with the known standard.

Finally, increasing information will widen the divide between those with the skills and resources to obtain information and those without. This is not simply a matter of access to the Internet. With or without the Internet, 25 percent of our society is functionally illiterate. As the literate consumer with time to search out information becomes more informed, the health care system will find a growing information divide between its have and have-not consumers.

Each of these trends takes place in an era of increasing consumerism. The "baby boomer" generation is more demanding of information and participatory decision making than their parents. Increased out-of-pocket spending for prescription copayments or for uncovered services such as plastic or lasik surgery emphasizes consumerism. Direct-to-consumer advertising is increasing the expectation that the consumer is the decision maker, alone or shared with their practitioner.

An analogy from financial services may be helpful. Three decades ago, most employees received a pension based on a formula selected by their employer, kept their savings in passbook accounts paying fixed and regulated interest, and had a choice of either whole life or term life insurance. The financial services industry has been transformed by consumer information and consumer decisions. Individual Retirement Accounts and 401(k) or 403(b) plans are widely used with consumers gathering information and making their own decisions. Money market funds and mutual funds have become major sites for savings. Life insurance products are numerous. Each of these changes has been accompanied by an increase in consumer access to investment information and by direct consumer decision making about their own economic future. Access to information may have similar impacts in health care.

Implications for Hospitals and Health Systems

The information empowerment of consumers raises numerous opportunities and issues for hospitals, health systems, and associations to consider. As an evolving development, the Strategic Policy Planning Committee is unable to present a definitive list; however, the following major issues merit consideration at this time.

Consumers and patients are relying increasingly on electronic media for information they traditionally obtained from a physician or hospital. The information is rapidly available from many sources and continuously available from others.
The is substantial competition to be the information provider-of-choice for consumers. While surveys show consumers prefer to obtain Internet health information from Institutes, medical associations, and hospitals, they are presently using a much wider variety of sources.
Information moves readily across geographic boundaries.

The conventional wisdom that "all health care is local" may change. For emergency and routine services, patients may continue to use primarily local practitioners and providers. For major elective services and chronic diseases, consumers may increasingly search out regional or national sources of care perceived as "best of class."

Licensure is primarily a state function and practitioners and providers are licensed to provide care in the jurisdiction granting the license. The Internet is not subject to geographic and political boundaries. There is likely to be increased tension over the meaning of licensure.
Access to continuous information may increase demand for access to continuous diagnostic and treatment services. Health care organizations that continue to offer only limited hours or weekday-only services are likely to disappoint consumer expectations and stimulate consumers to look for alternative sources of care.
Access to information may enhance self-diagnosis and self-care. This may lead to consumers to seek laboratory tests and x-rays upon their own request. Hospitals and health systems that chose not to allow direct consumer ordering can expect consumers to seek alternative sources that will permit direct ordering of diagnostic tests.
Consumers are increasingly aware that their own medical information is widely scattered in a series of medical records in hospitals, physicians offices, dentist offices and other sites. Some consumers have already demonstrated an interest in having a single, personal medical record under their own control that is accessible to and will accept entries from multiple providers and practitioners. As privacy and security systems are developed, consumers are likely to increase their demands for a single, personal, electronic medical record.
The legal and ethical frameworks for health information are rapidly evolving. Old issues of information access and validity are more salient, and new issues are arising. Self-regulatory and governmental initiatives can both be expected.
Consumers are using the Internet to obtain price information before making decisions. They are likely to seek information on the costs of hospital, physicians, pharmaceutical, and other health services. Given the multiplicity of reimbursement arrangements for health services, a widely used structure for categorizing services and reporting prices across providers and practitioners is needed.
Hospitals are expected by their communities and business partners to invest in the information infrastructure and systems necessary to assure connectivity and open communications. This may present a special challenge to small, rural hospitals in isolated communities where fewer communication and connectivity options are available.

Issues for consideration by Hospitals and Health Systems

As consumers use new information services, hospitals need to know what their consumers are experiencing.

Hospitals need to be as wired and connected as their patients. With the present multiplicity of information resources, there is no single, easy pathway for hospitals to follow. Hospitals should consider strategies to continuously learn about how consumers are obtaining information and how the information is changing their expectations. Consciously asking hospital employees to share their insights and experiences has been helpful to some members.
Hospitals need to understand how differences in consumer access to information alters their expectations. It will be as unacceptable to patients to assume that everyone has ready access to the Internet as it will be to assume patients do not use the Internet or other sources of information.
Consumer interest in health information provides hospitals and health systems with potential new services for their communities.

Hospitals need to determine if they wish to broaden their missions to include becoming a direct-to-consumer information source. This could include providing public access to the hospital's medical library, establishing a community health education center, developing kiosks in public sites like shopping malls, or sponsoring a web page on the Internet.

Physicians and other practitioners are increasingly establishing a "home page" on the Internet for their practices. Some physicians are working with a specialty society that hosts the home page. Other physicians are working directly with an Internet vendor. Physicians may find either of these arrangements to be inconvenient or inefficient. Hospitals and health systems should consider establishing the capability to become a host for physicians and other practitioners.
As diagnostic, treatment and provider performance becomes increasingly available, patients may ask physicians and other practitioners for recommended Internet sites to consult. Hospitals and health systems should act quickly to open a dialogue with the medical staff to clearly define mutual expectations and provide patients with consistent and trusted information sources.
Hospitals establishing e-mail services to respond to patient questions and/or provide results to patients should consider establishing careful procedures that validate the identity of the recipient. The anonymous nature of the Internet could permit children (of all ages) to pose as parents or vice versa and employers to pose as employees.
Hospitals should consider developing ethical guidelines to define the boundaries of appropriate information and communications. The guidelines should specifically address conflicts of interest, criteria for determining the validity of information distributed, disclosure policies, and procedures for regularly updating information provided.
As performance information becomes more widely available, hospitals should consider strategies to identify and evaluate sources providing information on the hospital's quality or performance. Some information may be accurate and up-to-date; other information may either be inaccurate and old. The hospital needs to know what others are saying about it to preserve public trust and defend, against inappropriate attack, its reputation.
Modern communications provide consumers with access across state lines. Hospitals should consider the information and services they provide to assure that they do not become vulnerable to charges of "practicing without a license" in another jurisdiction.
Communications patterns and information systems are changing rapidly. Hospital leadership needs to consider how to identify, evaluate, and rapidly adopt new information resources and expectations as hospital compentencies.

Issues for consideration by the American Hospital Association

The AHA should become a knowledgeable source of information for the membership on:
- consumer use of information sources, especially Internet sources · the impact of information on consumer expectations for health care;
- useful approaches to categorizing consumers by their information interests;
- "lessons learned" by hospitals offering direct-to-the-consumer information services; and
- ·nformation sources developed to evaluate hospital and practitioner quality and/or performance.
The Internet allows almost anyone to post almost anything. Consumer have access to up-do-date and valid information and to outdates, unscientific, and misleading information. The AHA should consider working with other medical and health care organizations to establish a "trusted source" that would allow its "seal of good practices" to be used by Internet pages that comply with the standards of the trusted source.
The AHA should consider establishing a means of convening information providers to develop efficient architectures for information. Member costs will be reduced if the AHA can convene a successful effort to bring together the diverse and competing parties to develop standardized and/or compatible information requirements.
To minimize the need for intrusive governmental regulations, the AHA should consider developing a model code of conduct for electronic medical and health communications. Just as the AHA provided members with a model for a "Patient's Bill of Rights," the opportunity is now present to work with members to develop a shared expectation within the field for the many uses of Internet information.
The AHA should consider offering members business services that provide them with more efficient ways to obtain and distribute consumer and patient information, both written and graphical.
The Health Insurance Portability and Accountability Act was (HIPAA) was enacted prior to the widespread use of the Internet, Intranet, and private networks. In reviewing and evaluating proposed HIPAA regulations, the AHA should constantly consider whether provisions will facilitate or thwart efficient, computer-based communications.
The AHA should consider providing the field with leadership on the new legal issues that will accompany new information sources and methods.

As the meaning of hospital and practitioner licensure is reviewed and questioned, the AHA should consider taking an active part in the dialogue on defining licensure in an electronic era.

The comprehensive, personal medical record retained by the patient in a designated electronic site will raise many new issues. The AHA should be included in discussions of how these issues are addressed and resolved.

Conclusion

Hospitals face enormous financial and operational pressures to sustain their present services. At the same time, hospitals must not become so focused on current activities that they miss the transformations that are essential for evolving into tomorrow. The information empowerment of consumers has been identified as one of the transforming changes. In this report, the AHA Strategic Policy Planning Committee has summarized key aspects of that transformation, implications for health care providers, and issues for hospitals and association to consider immediately.

Back

The SPPC recognizes that some in the health care field object to using the term consumer because they feel it implies a business model and diminishes the status of patients. The Committee, however, uses consumer because it wishes to have the reader understand that the impact of information empowerment includes patients, potential patients, family members, and everyone in the community.

Back

The other two issues addressed were "Coverage Under Age 65" and "Workforce Shortages." Separate papers on each of these issues have been developed and provided to the membership. Both may be obtained on the AHA web site: www.ahapolicyforum.org/resources under the "reports and publications" heading.