In 1996, the Internet emerged as a valuable source of consumer health information.  One recent survey estimates that greater than 60 million U.S. residents used the internet to get health information in 2000.  There are thousands of sites to choose from that offer health-related information.  These sites may use medical books, journals, professional organizations, advocacy groups, patient/family discussion groups and individuals or companies promoting their products or services as sources of information.  The material present ranges in its accuracy, reliability and value from very good to very bad. 

Although the Internet provides many benefits as an information resource, it is an unregulated network.  Anyone with access to a computer, modem and necessary software can create a Web site.  Unlike most traditional forms of information, the content of a Web site does not need to be approved.  Information can therefore be published and made available for the public even if it is false and/or misleading.  Unfortunately, no regulatory body exists to ensure that consumers are not taken advantage of on the Internet.  Given this situation, it is in your best interest as an Internet user to evaluate the information you locate in order to determine both its quality and value for your needs.  On the Internet, "caveat emptor" - let the buyer beware - are words to live by for the foreseeable future.

            The explosion of information on the Internet led several federal and international agencies to become concerned that private companies and individuals might take advantage of unsuspecting healthcare consumers using persuasive Web sites.  In 1995, an international conference on the use of the Internet in healthcare resulted in the creation an international initiative, Health on the Net Foundation (HON).  HON is a non-profit organization dedicated to "promote the effective and reliable use of the new technologies for telemedicine in healthcare around the world."  To assist healthcare consumers sift through the thousands of medical Web sites offering advice and services, HON has developed a Code of Conduct for the provision of medical Web sites.  The principles of conduct are:

1.  Authority

Any medical or health advice provided and hosted on this site will only be given by medically trained and qualified professionals unless a clear statement is made that a piece of advice offered is from a non-medically qualified individual or organization.

2.  Complementarity

The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.

3.  Confidentiality

Confidentiality of data relating to individual patients and visitors to a medical/health Web site, including their identity, is respected by this Web site. The Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

4.  Attribution

Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed (e.g. at the bottom of the page).

5.  Justifiability

Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above in Principle 4.

6.  Transparency of authorship

The designers of this Web site will seek to provide information in the clearest possible manner and provide contact addresses for visitors that seek further information or support. The Webmaster will display his/her E-mail address clearly throughout the Web site.

7.  Transparency of sponsorship

The designers of this Web site will seek to provide information in the clearest possible manner and provide contact addresses for visitors that seek further information or support. The Webmaster will display his/her E-mail address clearly throughout the Web site.

8.  Honesty in advertising and editorial policy

If advertising is a source of funding it will be clearly stated. A brief description of the advertising policy adopted by the Web site owners will be displayed on the site. Advertising and other promotional material will be presented to viewers in a manner and context that facilitates differentiation between it and the original material created by the institution operating the site.

The goal of the “HONcode” is to improve the accuracy and quality of consumer healthcare information available on the Internet.  The blue and red HONcode seal on Web sites complying with the above basic ethical standards helps consumers identify sources of reliable information.

B.  Suggestions to Help Filter Web Sites and Information

            There are three basic ways to find information on the Internet.  You can browse casually, look in a more focused fashion under categories/subjects, or search using search engines such as Yahoo and Excite. There is a tendency to assume that information retrieved by a search engine has been previously evaluated as part of the selection process, but this is a misconception.  Regardless of how you find information on the Internet, it will be important for you to know how to evaluate it.  Also, it is a common assumption that a search engine will retrieve all applicable information.  Search engines are not exhaustive, and each search engine will retrieve different information.  Using a medical search engine, such as Achoo or MedWebPlus, will often result in more appropriate results. 

            Traditionally, there are three ways in which written information is filtered.  First, if information is written and/or issued by a reliable organization such as the federal government, it is accepted as having validity.  Second, if the material is validated as part of an editorial or peer review process, it is generally accepted as reliable.  Lastly, if the information is evaluated by experts or subject specialists/librarians as part of a collection development, it is considered credible.  When you begin to evaluate the information you find on the Internet, consider these two questions:

1.      Is this “good” information–accurate, fair and balanced- provided by a reliable source?
2.      Is this information relevant to my situation and needs?

As you can see, there is no single or perfect indicator of reliability, truthfulness or value.  You must make your own decision based on a collection of your observations.  Several organizations have put together some suggestions to help you determine the reliability of a Web site.  Questions for you to consider include:

1.  Who maintains the site?

You are more likely to get legitimate information from an established medical institution like a hospital, research-oriented university or governmental organization.  Private medical practitioners and organizations may have marketing, social or political agendas that can influence the type of material they offer.  Try to weigh the information you receive against what you think is the intent of the author(s).  According to Robert Harris, Professor of English at Southern California College, "information pretending to objectivity but possessing a hidden agenda of persuasion or a hidden bias is among the most common kind of information in our culture."

2.  Is there a listing of names and credentials of those responsible for preparing and verifying the site's contents?

Look for a listing of the source of the information whether it is an author, editorial board or sponsoring organization.  What is the education, training and/or experience in the field of these individuals?  Answering the above questions may help to determine the author's reputation or standing among peers.  Also look to see if the site is sponsored by a known and respected organization.  Contact information should also be provided so visitors to the site can acquire additional information or have questions answered.

3.  Does the site link to other sources of medical information?

In general, a reputable organization will not declare itself to be the only source of information on a specific health issue.  Quality sites often feature more than one perspective on a health topic.  Additionally, it is in your best interest to also compare the information you find on one site with others.  Using other sources is a way of confirming the credibility of the information you previously found.

4.  When was the site last updated?

Usually, the more current the site, the more likely it is to provide timely material.  If you are looking for treatment information, look for sites that are updated weekly or monthly so that they contain accurate, up-to-date information.  If a site has not been modified in months, it might contain outdated material.  This is not so much a concern with information that focuses on the emotional and support aspects of cancer.

5.  Does the site promote products?

You should be cautious when sites promote specific products that you can buy over the Internet.  Because the Internet is constantly changing, the site you purchase from one week might not be in existence the following week if you have questions about the product.

Once you have found information on the Web that you believe to have credibility and are interested in, write down the name and web address of the site, print out the information and bring it to your health care provider. Your doctor can help to answer any remaining questions you may have, help you determine whether the information is legitimate and if it would be an appropriate therapy for you.  It is also important to check with your doctor to make sure that it is safe for you to begin a new treatment, especially if you are currently undergoing another type of therapy.

Assessing the credibility of health and medical information in Internet news and chat groups is exceedingly important.  Information in these forums is shorter-lived and often, the source is unidentifiable.  Although these news and chat groups can provide reliable information about cancer and offer support to patients, they can also perpetuate misinformation.  Most services do not verify what is posted in their newsgroups or control what is "said" in chat rooms.  A Wall Street Journal article stated that, "Online communication has been widely heralded as a boon for the ill.  Patients form support groups, sharing large pains and small triumphs; they critique wheelchairs and feeding tubes, discuss symptoms and doctors, or simply comfort and inspire each other.  But…desperate patients can spread untested treatments and questionable practices…." Treatment testimonials read about in chat rooms should never be the sole source of information used when making a decision about a potential treatment.  Corroboration by your physician or other medical sources is exceedingly important.

            In summary, when evaluating Web sites, use your best skeptical judgment to avoid quacks and misinformation.  Selecting sources that provide as much of the following information as possible will help you to obtain reliable information on the Internet:

·        Name of author(s), editorial board and/or sponsoring organization
·        If an author is listed, his/her title or position and organizational affiliation
·        Date of page creation or version
·        Contact information
·        Indicators of information quality

V.                 Creating Good Relationships With Your Health Care Providers

A.  The Importance of a Good Partnership

Your relationships with your health care providers, whether they are conventional or complementary/alternative practitioners, are essential to your receipt of good care.  Fundamental to good medical care is the respect of your rights as a patient.  The precepts of the Patients’ Bill of Rights holds true for any provider-patient relationship.  As a consumer in the health care system, you have a right to:

·        Be treated fairly and openly in all matters.
·        Receive considerate and respectful care in a clean and safe environment free of unnecessary restraints.
·        Obtain all information regarding your visit.  Receive complete information about your diagnosis, treatment and prognosis.
·        Receive all the information that you need to give informed consent for any proposed procedure or treatment. This information shall include the possible risks and benefits of the procedure or treatment.
·        Refuse treatment and be told what effect this may have on your health. 
·        Refuse to take part in research. In deciding whether or not to participate, you have the right to a full explanation.
·        Receive a copy of your medical records, consistent with the state statutes on this matter.

In light of your rights as a patient, this section will address those issues essential to developing effective relationships between you and your health care providers.

Communication can help to strengthen and build relationships  with your health care providers.  Each of us wants to feel that our doctors and other members of our health care team care about us as individuals, and communication facilitates caring.  Being able to communicate about topics that include, but are not limited to, your illness and options for treatment is important.  Although every health care provider has a different communication style, it is important that you feel comfortable talking with and discussing with him/her intimate issues that affect your physical, emotional and/or spiritual sense of health and well-being. 

The development of a partnership between yourself and your physician is also an essential part of receiving good medical care.  When you and your doctor communicate - explain, question, listen and discuss – a partnership develops.  As with any successful relationship, a good partnership does take time to develop.  It will evolve if both you and your doctor are willing to take responsibility for ensuring its success.  As a partner in this relationship, your responsibilities are to:

·        actively try to understand and learn about your disease and treatment program
·        make a commitment to following your doctor’s advice.

Your doctor’s responsibilities are to:

·        try and be aware of your needs and explain difficult concepts completely
·        discuss the effects of your disease and the treatment program in an atmosphere of respect and trust.

Appendix B contains the Wellness Community Oncologist-Patient Statement which will assist you in clarifying the responsibilities of you and your health care provider.

B.  Suggestions to Help Build a Partnership with your Health Care Provider

Creating good relationships and ensuring quality care may also involve you taking a more active role in your health care.  In Handbook of Behavioral Medicine, Irving Janis of Yale University states that patients are no longer "seen as passive recipients of health care who are expected to do willingly whatever the doctor says.  Rather, they are increasingly regarded as active decision makers, making crucial choices that can markedly affect the kind of treatment they receive and the outcome."  Taking an active role in your own health consists of many elements.  For example, preparation for and attention during an appointment can help you get the most benefit from your time with your providers.  The following is a list of guidelines and helpful tips to help you prepare for your appointment, actively engage your physician during your appointment and take control of your health once you leave his/her office.

1.  Appointment Preparation

·        Make a list of your objectives and concerns to cover during the appointment in order of importance.
·        Write down questions you wish to ask your doctor so that you will not forget them.  Asking questions is essential to getting what you want out of the appointment. 
·        Bring someone with you, if possible.  A family member or close friend can assist you in taking notes or being a 'second pair of ears’ when you are receiving large amounts of information.
·        Prepare a detailed, well-organized account of your symptoms and relevant past medical history.  For return visits, prepare a brief progress report.
·        Bring your insurance cards, names and addresses of your other health care providers and/or your medical records with you to your appointment.
·        Make a list of medicines (name and dose) you are taking or bring your medicine bottles with you to your appointment.  Your doctor needs to know ALL of the medicines you take (even non-prescription drugs) because it is possible for medicines to interact, causing unpleasant and sometimes dangerous side effects.  In addition to over-the-counter medicines such as eye drops and laxatives, it is extremely important that you inform your health care providers about any vitamins, minerals and herbs you are taking.  For return visits, make a list of any medication refills you need.

2.  During the Appointment

·        Answer your doctor’s questions honestly even if you believe your answers are not what your doctor wants to hear.  Your doctor can give you the best treatment only when you respond honestly to all his/her questions.
·        Be concrete and specific about your symptoms and/or any side effects you are experiencing.  Your doctor needs to know your opinions and observations about what is working and what is not working in order to prescribe proper treatment for your symptoms.
·        Report any unusual symptoms you have noticed such as change in appetite, weight, sleeping pattern or energy level. 
·        Tell your doctor about any fears or complaints you have about your treatment.
·        Always ask your doctor to explain anything about your disease or your treatment that you do not understand.  If you do not completely understand your doctor’s explanation, he/she will not know unless you say something.  Do not be embarrassed to ask the same question twice.  Part of your doctor’s job is to educate you about your disease and your treatment.
·        Ask about possible side effects of your treatments and what to do if they should occur.  Ask what to do if there is an emergency, or when the office is closed.
·        Take notes or tape record the appointment (ask for permission first) if you are worried about forgetting information your doctor gives you.  If medication instructions are unclear, ask for an explanation or written instructions before leaving the office.
·        Pay attention to and be cordial with the office staff and nurses.  You will have to talk with them often, and a receptionist or nurse can be a powerful ally when wishing to speak with your doctor on the phone or when making an appointment.
·        Cancer care often involves a team of health care providers with different areas of expertise.  This may be a team that is used to working together or it may be a team that you have put together yourself to integrate conventional treatments and complementary care.  When there are many people involved, it can be difficult to keep several sets of instructions straight.  Make sure you understand all of your instructions.  Because you are the focus of this health care team, it is important that your treatment plan is understood by all the team members.  If you have put together your own team of health care providers, you may need to be more active in ensuring communication between members of your team.

3.  After Your Appointment

·        Keep track of your treatment.
·        If you have a problem with your treatment, consult your doctor before attempting to change your therapy without assistance.
·        Stay alert for side effects.  If you do not know or remember specific instructions about side effects from your appointment, call your doctor.

4.  Telephone Tips

·        Learn which days are busiest and what times are best to call.  It is usually best to call early in the workday because your doctor is likely to be less busy.
·        Before calling your doctor’s office, write down a short description of the problem you are having, your reason for calling, your symptom list and a few questions that you might have.
·        Have a pen and paper ready to write down instructions.

5.  Finances

·        Do not be afraid to ask your doctor how much something will cost or if there are less expensive options.
·        There are many things you can do for your health that cost little or nothing.  Some examples include eating a healthier diet, starting an exercise routine appropriate for your health situation or joining a support group.

Taking control of your health also includes identifying and expressing your physical, emotional and/or spiritual needs.  Your doctor should be willing to discuss new ideas or treatment approaches that you feel would support your overall sense of well-being.   Remember that integrative medicine is individualized medicine.  Hence, a doctor who is able to support you in a holistic sense is a powerful component in helping you to achieve overall wellness.

It is important to be aware that some conventional doctors will be more open than others to combining complementary with conventional medicine.  Likewise, some CAM practitioners may be more resistant than others to conventional treatments.  In either case, it is important for you to question those providers who quickly dismiss conventional or CAM therapies.  Individual beliefs and biases come from one's education and life experiences.  Ideally, health care providers recognize their own biases and are open to differing points of view if there are reasons to believe a different strategy may be helpful.  Frank and open discussions with your doctor are important.  If the discussion is not productive, requesting a second opinion is always an appropriate option.  Ultimately, you should feel that your rights as a patient are upheld and that you are provided with the insight and advice necessary for you to make informed choices.

            If you are interested in finding a physician who practices alternative medicine, contact the American Holistic Health Association (AHHA), an association representing physicians who practice complementary and alternative medicine. The AHHA will provide you with names of practicing doctors in your area and their specialties.  However, these referrals are not offered with a guarantee.  The Healing Web Page also has a comprehensive referral network online at www.holisticmed.com.  To find physicians trained in homeopathy, contact the National Center for Homeopathy and ask for their referral list.  See below for contact information. 

CAM practitioners, many of whom are not medical doctors, vary widely in their education, training and experience in alternative treatments.  Further confusing the issues are the inconsistent licensing laws for CAM practitioners which vary from state to state.  Please refer to Appendix C for information on CAM practitioner board certification and health care licensing issues to ensure that your health care provider has the proper education and experience to provide you with safe and effective treatment.  Appendix D lists many of the professional degrees and titles of CAM practitioners you may find as you research different CAM therapies.