Consumer health informatics in the information age

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Inhibitors

Access to information on the internet

The information society brings a risk of a widening of the gap between those who have access to new technology and those who have been excluded. In the industrial age, the inverse care law described the idea that the availability of good medical care tends to vary inversely with the need for medical care in the population served. In the information age, we face an analogous "inverse information law"- that is, access to appropriate information is particularly difficult for those who need it most.

Confidentiality of Electronic Medical Records

Electronic medical records (EMRs) are rapidly becoming the standard among hospitals and large physician organizations, and should be universal among health providers in all settings by the year 2020. However, consumers are paranoid that their medical records could be accessed by their employers, insurance companies, banks and lenders, credit reporting firms, or vendors of massive consumer databases. Electronic security experts believe the technology exists to safeguard consumer health information. But consumer activists are not fully convinced, and may raise barriers to electronic transmission of patient data, even from one doctor to another physician.

Internet Privacy

Medical support groups and health-oriented chat rooms are propelling the consumer demand for more detailed medical information. But members of those chat rooms, such as AIDS patients or the disabled, are afraid that their electronic conversations and e-mail lists may not be private.

Regulation of E-Health Commerce

Online prescribing of Viagra, Propecia, Xenical, and other popular lifestyle pharmaceuticals has led to calls for new governmental regulation. Health claims for some remedies are troubling government. The FDA has already warned several health Web sites about alleged health benefits, and the sites have voluntarily complied or closed. Although federal policy-makers have generally adopted a hands-off attitude towards the Internet, spurious health claims for unlicensed health products will probably lead to more regulation.

Readability and educational levels

In one study of people having cardiac surgery, 18 had already used the Internet for information related to their surgery (or the condition which necessitated their surgery) prior to recruitment into the study (Murero et al 2001). Only three of these people rated the readability of Internet medical information on cardiac surgery as acceptable. The majority (83%) encountered difficulties understanding the information. In spite of this, 94% found the information helped them cope better with stress and anxiety during the pre-operative and post-operative period. Almost all felt that easier language should be used in medical information on the Internet.

Paradigms

- Healthcare and medical information are provided by independent doctors or at hospitals.

- Consumers can use information technology, and especially the internet, to gain access to medical information and control their own health care.

Timing

The Internet has been used in health care for nearly 20 years as a research, educational, and informational tool. Most healthcare professionals schooled or trained after 1980 have had the opportunity to investigate medical- or health-related topics via online services such as Medline, Grateful Med, and similar electronic databases. It is not surprising, therefore, that academic medical centers were among the first healthcare institutions to establish a presence on the Web. Their primary goal, however, was education and research rather than marketing and promotion - a goal that has begun to change.

Commercial uses of the Internet in health care have a more limited history but are evolving and expanding.

Five basic types of healthcare organizations now represented on the Web:

• Health plans;

• Medical centers and facilities;

• Medical manufacturers (including pharmaceutical, hardware, and disposable manufacturers);

• Membership organizations, educational groups, and public welfare organizations; and

• Medical provider groups.

Web Resources

Journal of Medical Internet Research

http://www.jmir.org

British Medical journal

http://bmj.bmjjournals.com/