A Guide to E-Health for the Healthcare Professional:
AN INTRODUCTION

INTRODUCTION

The Internet has the potential to revolutionize healthcare by providing unprecedented access to information as well as health products and services on "e-health sites."  Millions of consumers worldwide are using the Internet to obtain quality health information directly affecting their lives making this form of telemedicine an important new tool for improving healthcare.  In the U.S. alone, a projected 30 million people will go online in 2000 for health related material.

There are currently as many as 20,000 e-health sites online offering general content on health and medical care including hundreds of thousands of individual Web pages dedicated to a broad range of topics.  As of May 2000, for example, there were some 614,000 web pages related to diabetes.  As a result, consumers with the time and skills to filter through this plethora of material can become as informed about particular diseases as many health professionals.

Because, the quality of on-line health content is uneven, and the sale of medical products and services on the Internet is largely not regulated, health providers and consumers must be careful in evaluating whether or not the information, product or service is appropriate.  Though many health-related Web sites provide accurate and up-to-date news, facts and advice, others may not.  Instead, material may be provided that is not only misleading, but also potentially harmful.

FUNCTIONS OF HEALTH-RELATED INTERNET SITES

Because of the large numbers and variety of e-health sites, it is important for the consumer, whether a healthcare provider or a patient, to understand that e-health Web sites have different purposes or functions and that some may be more appropriate than others.  Some sites focus on providing services for the health industry.  Others provide patient health and medical content.  Still others sell medical products and services.  Many sites serve multiple functions such as providing consumer information, hosting on-line support groups and providing business support services. 

In general, the purpose of e-health sites can be classified into one or more of these broad functional areas:

1. Consumer Information Services

General health and wellness information sites are among the most familiar and widely documented e-health sites.  Some sites target a specific population group such as women's health or a specific disease such as cancer.  Some consumer information sites are run by non-profit organizations such as the American Cancer Society and provide a wide range of content.  Government agencies often provide information as part of the organization's public mission.  For example, the National Library of Medicine maintains Medline, which offers one of the most comprehensive databases of medical information in the world.  Others are commercial sites that are operated by for-profit companies that obtain revenue from advertisements and other vehicles.  Often the commercial-based health content sites provide entry points to other areas or sites that sell products and services and may offer additional benefits such as the ability to store a personal medical record online in a protected site. For example, drkoop.com provides visitors to the site with a large array of content and links to prescription drug services and sources of on-line advice.

2. Support Groups

Support groups may be accessed using Web sites, email messages on a “list serve” or as part of the Internet newsgroups.  Rather than providing static content, they exist as virtual discussion areas for sharing ideas among patients and their family regarding specific health problems and provide a source of mutual support among people afflicted with similar health problems. These support group sites tend to be free of charge and very popular.  A few may be moderated by a health professional but most are free-wheeling discussion groups with few rules about the exchange of ideas or advice provided other than staying on topic.

3. Prescription Drug Sales

An increasing number of Web sites sell prescription medications and non-prescription drugs and related products to patients on-line. Some sites are affiliated with major drug store chains such as drugstore.com, which is affiliated with Rite Aid.  Other prescription drug sites are independently operated such as planetrx.com.  Both types of sites provide over the counter medications that are delivered through the mail.  The sites usually require the patient to submit a doctor’s written prescription by fax and often check the validity of the prescription directly with the prescribing health professional.  Other sites are considerably more relaxed and may sell prescriptions drugs without requiring a written prescription and may sell drugs that are not approved or may even be illegal.  Many of these sites also offer other non-prescription medications or products for the consumer often at a discount.

4. Medical Advice and Diagnosis

Increasingly, e-health Web sites targeting consumers are providing more than generic content.  Some sites provide basic answers to specific questions submitted by visitors to the sites.  These are often a part of a larger consumer health information site.  A growing number of sites provide actual medical "consultations" including a diagnosis and will issue a drug prescription and treatment plan based on information provided by the visitor to the site.  Simple questions are often answered free but there is a charge associated with providing medical diagnosis and treatment.  Such services are not covered by insurance.  Furthermore, formal online medical consultations between a patient and primary health provider resulting in a prescription for medication without ever having had a face-to-face meeting is considered by some to be violating basic medical ethics.  In addition, state medical licensure requirements

5. Contract Health Services

Some e-health sites are designed to provide specific patient information and services for a closed set of patients.  The site provides these services under contract with an insurance plan or employer for covered individuals.  The site provides specific content related to the insurance plan and its benefits.  It may also provide highly specific content and services for insured consumers with a chronic disease such as diabetes.  E-health sites that provide this function sometimes use a password-protected screen that pops up before the registered user can enter the site.

6. Health Business Support Services

Many e-health sites are designed to provide business services for health professionals and healthcare organizations.  These sites often assist the health professionals with financial billing and maintaining records as well as accessing large databases of content.  For example, WebMD, one of the larger e-health sites providing patient health content, primarily focuses on claims processing, eligibility verification and practice management as its source of business growth.  The goal of these sites is to capture the traditional business services that exist in a physician's office and move them to Web-based services.  These sites often provide the subscriber with access to sophisticated databases of medical research studies or drug interactions tables that primarily target practicing health professionals.

TOOLS TO EVALUATE E-HEALTH SITES

The rapid growth in the number of e-health sites and the volume of information and services available for the first time to consumers online is partly attributable to the limited regulation of the Internet.  Well-informed consumers can now take personal responsibility for many of their healthcare decisions.  On the other hand, there is no regulating body responsible for overseeing the provision of on-line health and medical information or services.  However, a number of useful guidelines have been developed by a variety of interested organizations to assist consumers in making appropriate choices when seeking health information or looking to purchase medical goods and services online.

1.      Codes of Conduct, Principles and Seals of Approval for Developers of E-Health Sites

Self-regulated guidelines and certifications for e-health sites can be an important tool for health professionals, patients or their family in selecting appropriate e-health sites.  These are designed to provide assurances regarding the quality of the sites that agree to adhere to the guidelines.  Some guidelines apply to a specific issue such as privacy or financial security.  Others address issues regarding information quality.  Sites complying with the guidelines often display a logo indicating that the developer of the site has pledged to adhere to the principles.  Patients and health providers can look for sites that comply with these codes as part of the process of selecting appropriate e-health sites.

• The American Medical Association recently adopted "Guidelines for Medical and Health Information Sites on the Internet: Principles Governing AMA Web Sites."  The guidelines were developed to assist in the development of AMA's own consumer health information Web site (Medem) that is being developed in partnership with six medical societies.  The principles are located at http://jama.ama-assn.org/issues/v283n12/full/jsc00054.html.  The guidelines are available for other sites but there is no compliance or certification process in place.

• The Council of Better Business Bureaus operates www.bbbOnline.org, that provides guidelines for privacy and recognizes Web sites that have adopted the BBB guidelines.  It provides an important model for assisting consumers in choosing web sites using a recognized and trusted seal of approval.  Participating sites display the bbbOnline logo.

• The Health On the Net Foundation (HON), based in Switzerland, has developed a Code of Conduct for medical and health web sites (http://www.hon.ch/HONcode).   The HON Code, first developed in 1996, addresses the reliability and credibility of content contained on a Web site.  Sites wishing to follow the principles and display the HON code icon on their site must fill out an application form and receive the HON logo to display on their web sites.  Approximately 2,800 Web sites display the HON code (as of June 2000).  The logo may be displayed indefinitely and there is no ongoing enforcement of compliance.

• The Hi-Ethics, or Health Internet Ethics, a coalition of consumer health Internet sites and content providers, has adopted a set of self-regulating principles relating to information privacy and disclosure of such items as site ownership, sponsorships and other financial arrangements and authorship of content.  Hi-Ethics members (as of May 1, 2000) include 20 large providers of health content over the Internet.  The principles were announced in May 2000.  It is anticipated that sites agreeing to the principles will be able to display on their site an indicator of their participation.  Meanwhile, participating sites are listed on the Hi-Ethics Web page.  There are no plans currently for verifying compliance or enforcement of the Code.  The principles are located at http://www.hiethics.org/Principles/index.asp

• The Internet Healthcare Coalition (IHC) has developed an “International Code of Ethics for the Health Internet” for healthcare sites and services on the Internet.   The IHC Code, developed in February 2000, includes eight broad principles for developers of e-health sites regarding disclosure, privacy and quality of content.  IHC held a public summit in developing the code.  Approximately 30 organizations have endorsed the Code.  The Coalition includes a broad array of groups and individuals involved in Internet healthcare.  There are plans to allow participating sites to display a logo signifying their compliance with the code.  In the meantime, a list of the sites is available on the IHC Web site.  It is unclear how implementation of the Code will be verified or enforced.  The Code is available at http://www.ihealthcoalition.org/ethics/ethics.html.

• The Ethical Standards For Internet On-Line Counseling has been developed by the American Counseling Association.  They provide guidance for counselors providing services over the Internet.  The guidelines are available at http://www.counseling.org/gc/cybertx.htm

• The National Association of Boards of Pharmacy (http://www.nabp.net/) has developed an accreditation program, the Verified Internet Pharmacy Practice Sites (VIPPS) for on-line pharmacies requiring them to be accredited by the state board and follow a 17-point criteria review.  The certification does not cover offshore pharmacies not regulated by U.S. based state licensure authorities.  Approved sites display the VIPPS seal of approval.

• TRUSTe is an independent, non-profit privacy initiative that sets forth principles related to protecting visitor privacy.  TRUSTe (www.truste.org) contains links to numerous certified Internet sites that pass its verification process.  In addition, participating sites display the TRUSTe logo.

2. Consumer Oriented Evaluations of E-Health Sites

In addition to looking for sites that adhere to a set of self-regulated principles, a number of Web sites have been developed which allow the health professional or patient to evaluate other e-health sites.  Rather than issuing a certification of e-health sites, these provide consumers with actual ratings of existing sites or provide generic checklists to use in making selections.

• Gomez.com compares health and medical Web sites based on scorecards developed for each of the participating sites which is administered by “Gomez experts” as well as using questionnaires completed by the site and comments submitted by visitors to the Gomez.com site.  The site is located at http://gomez.com.

• Twirlix.com also provides comparative ratings of a variety of e-health sites (among other internet sites).  The ratings are based on a formula using automated tools using about 20 criteria to provide the rating.  The company closely holds most of the components of the criteria but they include the number of outside links to the site, the amount of content available, and how recently the content has been placed on the site.  The site is located at www.twirlix.com.

• In addition to the above-mentioned Code of Conduct for developers of e-health Web sites, the Health on the Net (HON) site also contains a brief consumer-oriented "HONcode site-checker" that was developed to help consumers evaluate whether the site follows the HON code.  The site-checker is available at http://www.hon.ch/HONcode/HONcode_check.html.

• The Internet Healthcare Coalition site also contains “Tips for Health Consumers,” ten suggestions for consumers to evaluate the reliability of on-line health content and advice. The tips are located at http://www.ihealthcoalition.org/content/tips.html.

• DISCERN is a brief questionnaire, which has been designed to help users of consumer health information to judge the quality of written information about treatment choices.  Funded by the United Kingdom's National Health Service, DISCERN is based in the University of Oxford, Division of Public Health and Primary Health Care, at the Institute of Health Sciences.  DISCERN was initially developed for use with consumer health information in conventional print media and was expanded to include Internet-based e-health.  DISCERN can also be used by authors and publishers of content on treatment choices as a guide to the standard which users are entitled to expect.  The questionnaire is available at: http://www.discern.org.uk.

• The National Cancer Institute has published “10 Things to Know about Evaluating Medical Resources on the Web,” a brief checklist for consumers to use in evaluating e-health Web sites.  It is located at http://cancertrials.nci.nih.gov/beyond/evaluating.html.

• Mental Health Net is a private site that provides its own consumer health content plus evaluation criteria and a four star rating system for the mental health sites included in its list of links.  The site is available at http://mentalhelp.net/help/ratings.htm.

• Tufts University operates the Nutrition Navigator, which provides ratings and ranks Web sites providing nutrition information.  The ratings are developed by an advisory panel and reviewed by registered dietitians.  The site is available at http://navigator.tufts.edu/index.html.

CONCLUSION

The e-health world is still very much a consumer-beware environment.  Identifying appropriate e-health sites is not an easy task for most consumers.  Health professionals can play an important role in helping patients with this issue.  The tools mentioned here are designed to help make the selection process easier for both the patient and the patient’s healthcare provider.

It is important to remember that, while the Internet is a powerful tool to obtain information about health and medicine, it should be considered as only one of many different resources.  Online information should not be used as a complete substitute for seeking medical diagnosis and treatment from a licensed health care professional.

In the end, a very important part of making appropriate selections is taking the time to search out and visit multiple sites.  Just as obtaining a second opinion is often important for the patient, visiting multiple e-health Web sites is critical when seeking reliable content and services over the Internet.  Of course, the most reliable way to check the accuracy of health information and to obtain sound medical advice – whether from the Internet or elsewhere – is for the patient to discuss it with a licensed medical professional.