Consumer health informatics in the information age

Description

Accessing health information is one of the commonest reasons for going on-line: surveys show that 50% to 75% of World Wide Web users have used it to look for health information, and those who do so access such information over 3 times a month.

In December 2001 the NHS Direct consumer health information Web site (http://www.nhsdirect.nhs.uk/) dealt with 5.2 million hits from 171900 visitors.

The increasing availability of interactive information that is accessible to consumers, most notably through the internet and related technologies such as digital television and web television, coincides with the desire of most consumers to assume more responsibility for their health and the pressures of costs on health systems, the emphasis on the health of populations and on prevention, and the growing desire of health professionals to realise the potential of patients and their families.

Information technology and consumerism are synergistic forces that promote an "information age healthcare system" in which consumers can, ideally, use information technology to gain access to information and control their own health care, thereby utilising healthcare resources more efficiently. Today's "cyberdocs" on the internet may tomorrow turn into more trustworthy "cyberlicensed" professionals counselling patients online. This development is under way in the United Kingdom with the introduction of services such as NHS Direct, which provides advice to patients both on the web and over the phone.

Additionally, intelligent informatics applications can channel the floods of health information reaching consumers, can help patients attain a healthy balance between self reliance and seeking professional help, and can also help balance responsiveness to consumers and the management of demand, and virtual and face to face interaction.

Information technology and consumer health informatics are becoming an integral part of modern concepts of public health and national healthcare policies in many developed countries.

Enablers

National healthcare policies

Information technology and consumer health informatics are becoming integral parts of the modern concept of public health and national healthcare policies.

Developping or adapting existing computer based decision support systems for use by consumers

One decision support system that is being adapted and tested for consumers is HouseCall (Applied Medical Informatics), an informatics system derived from the existing physician knowledge base Iliad.

Focus group evaluations of HouseCall have shown that the program is easy to use and that consumers like using technology at home to investigate health issues and like participating in solving their medical problems.

The main challenge in developing comprehensive systems for consumers is that little is known about how patients interact with computer based informatics tools and how they digest and act on information.

Adoption of smart cards

The adoption of smart cards was recently announced by the European Union in an initiative which aims to ensure that "all European citizens should have the possibility to have a health smart card to enable secure and confidential access to networked patient information" by 2003.

Smart cards can be used as places to store health information directly, or the electronic medical record can be put onto the internet and smart cards can serve as keys by providing access. Just as consumers bank online today, they may in future be able to browse and annotate their health records online.

The quality control of health information on the internet and levels of certification

An ongoing European Union project, the MedPICS Certification and Rating of Trustworthy Health Information on the Net (medCERTAIN), is based on the idea that the quality of health information and interactive applications on the internet should not be controlled by a central body or authority but instead must be evaluated and labelled (associated with metainformation) by medical societies, professionals, or consumer organisations.

The project is developing a technical infrastructure to allow individuals, organisations, associations, societies, and other entities to rate the published health information found online by using a standardised vocabulary. The medCERTAIN consortium will also create different levels of certification for those who publish health information on the internet

Consumer empowerment with the internet

Physicians are increasingly experiencing patients bringing Internet printouts to the consultation. The Internet is a key influence in changing the balance of (knowledge) power between health care professionals and the public, empowering patients to become more involved in health care decision making and contributing to the deprofessionalization of medicine.

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/