The Consumer Health Reference Interview and Ethical Issues
Finding quality health information is not always an easy process. Consumers often need assistance in locating appropriate resources to answer information requests. The consumer health librarian may face some important challenges during the reference interview, the initial point of interaction between the consumer and the librarian. Consumers have often consulted other sources before ever coming to the library. For example, many consumers search the Internet for health information and find information of varying degrees of quality. They often consult with family members or friends regarding health concerns. The library may actually be considered a "last resort" for some people searching for health information.
The Consumer Health Reference Interview
Consumer health questions present special challenges to the reference interview process:
- Consumers may have incomplete information about their health condition, or they are unfamiliar with medical terminology.
- The information needed may be about a sensitive health issue, such as a mental health or sexual health condition. Stigma about the health condition may prevent the consumer from even approaching the librarian.
- The health concerns may be serious, life-altering, or life-endangering. In addition, the patron may be nervous, embarrassed, upset, and emotional. Often the individual has been newly diagnosed, or his or her loved one has been newly diagnosed.
- Consumers may have unreasonable expectations about the information available. For instance, they may want an easy-to-read source that clearly explains their unique medical condition. They might want a straightforward answer to a complex medical question so that they can make clear-cut decisions about their medical treatment. In reality, this kind of information may be difficult or impossible to find.
- Consumers may be concerned about confidentiality, anonymity, and security, especially about personal health information transmitted electronically. How can they be sure that information they send via e-mail or a website will be kept confidential?
- Consumers may be confused about the role of the librarian. They might assume that the librarian can advise them on making health care decisions.
- Librarians may be afraid of providing the wrong answer to the health information question. Librarians may also be concerned about providing negative information to the patron. For instance, would you refer your patron to a resource that indicates that indivuals with this health condition may have a very short time to live?
The following factors can affect success in the consumer health reference interview:
- Can the question be answered? If the consumer is looking for a "cure" for an incurable condition, it will be unrealistic and frustrating to try to answer the question.
- Did the patron ask the real question? Here, your skills at asking open-ended, neutral questions can reveal the true information needed.
- Did the librarian understand the actual question?
- Can the best resources be identified, and are they readily available?
Consider the following guidelines for the consumer health reference interview - adapted from Healthnet: Connecticut Consumer Health Information Network:
- Provide a welcoming, safe environment.
Because of the personal, sensitive nature of health topics, consumers may be reluctant to approach the librarian. Use welcoming behaviors like making eye contact, smiling, and greeting the patron. Provide a private area to discuss confidential topics. If there is not privacy at the reference desk, take the person to the book stacks, your office, or another quiet area. Lower your voice to maintain privacy.
- Be aware of the person asking the question.
Do not assume that the person asking the question is the person who has the health condition. Parents, other family members, or friends may be asking for information for their loved one. Determine the age and sex of the person in question. A medical condition may affect a child differently than an adult, and treatments can vary depending on age and sex. Also, be aware of the person's emotional state. The patron may be upset and not clear about the information he or she needs. Be empathetic, patient, and non-judgmental. Be aware of your own body language. Avoid agreeing or disagreeing with what the consumer expresses. Do not offer your own experiences or hearsay about similar medical conditions.
- Get as much information as possible.
Use open-ended, neutral questions to find as much information as possible about what the person wants to know. If the individual is reluctant to divulge this information because of the nature of the health condition, share your reasons for wanting to know. Consider saying, "It will help me to find the information you need if you can tell me more about what you want to know." Emphasize that you will respect his or her privacy. You can save a great deal of time by determining what the person already knows about the subject. What sources has he or she already consulted? Were these sources too detailed, not detailed enough, too technical, or too general?
- Verify medical terminology in a medical dictionary or encyclopedia.
A consumer might not know the correct medical terminology to describe his or her health condition. Always verify unfamiliar terms in a dictionary or encyclopedia (both available in MedlinePlus). Be cautious with medication names - some drugs have similar names but very different uses.
- Be aware of the limitations of medical information.
If appropriate, explain to the person the limitations of medical information, particularly that information becomes quickly outdated, that medical experts do not always agree about how to diagnose and treat a specific disease, and that most medical information is written in technical terms. Know when you have reached the limits of your collection, and express these limitations to the consumer. This may include the fact that currency and scope limit any collection. Be prepared to send users to other valid sources of information.
- Provide the most complete information to answer the information request.
Providing the best, most accurate information is the goal of every reference interaction, but some situations may pose a challenge to the consumer health librarian. A person may have a question about the prognosis of a specific disease that you learn is usually fatal. What should you do? You should not withhold information because this can be considered a form of censorship. Some people who want information about a serious disease may already suspect the prognosis. Emphasize that every situation is different, and that the individual should discuss the issue with his or her health care provider instead of interpreting the information on their own.
- Do not interpret medical information.
It is critical that you do not attempt to provide a diagnosis or recommend a therapy or intervention. Emphasize to your patron that you are an information professional, not a health professional. When discussing consumer health issues in person, on the telephone, or via e-mail, state the limitations of your role as an information professional and the limitations of your collection. Advise the patron to consult with his or her health care provider for interpretation or explanation of the information. Add a disclaimer statement to library publications, including signage and e-mail signature blocks. Sample wording for disclaimers is available at the Disclaimers page on the Consumer and Patient Health Information Section (CAPHIS) website.
- Provide referrals.
Although we are not health professionals, we can provide referral to health professionals and organizations when appropriate. Use MedlinePlus Directories or DIRLINE to find a local, state, or national organization dedicated to a specific health condition or concern. Remember that a referral is not the same as a recommendation. Do not recommend an individual health care provider to the patron.
Print and Online Resources
Barrett, Stephen et al. "Consumer Health: A Guide to Intelligent Decisions." New York: McGraw Hill Higher Education, 2007.
Healthnet: Connecticut Consumer Health Information Network, Lyman Maynard Stowe Library, University of Connecticut Health Center. Guidelines for Providing Medical Information. http://library.uchc.edu/departm/hnet/guidelines.html
Medical Library Association. Code of Ethics for Health Sciences Librarianship. http://www.mlanet.org/about/ethics.html
Medical Library Association Consumer and Patient Health Information Section (CAPHIS). Disclaimers. http://caphis.mlanet.org/resources/disclaimers.html
Medical Library Association Consumer and Patient Health Information Section (CAPHIS). The Librarian's Role in the Provision of Consumer Health Information and Patient Education. http://caphis.mlanet.org/resources/caphis_statement.html
Spatz, Michele. "Answering Consumer Health Questions." New York: Neil-Schuman Publishers, Inc., 2008.