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. Librarians and library staff may face some important challenges during the health reference interview, the initial point of interaction between the consumer and the staff member. Consumers often consult other sources before coming to the library. For example, consumers may hear or read about health topics in the news, and they often discuss health concerns with family members or friends. They often search the Internet for health information and find varying degrees of quality. The library may actually be considered a "last resort" for some people searching for health information.
Note: When the term 'librarian' appears below, the intended meaning includes all library staff members who provide reference and information services.
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 a staff member.
- 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 or their loved one has been newly diagnosed with a condition.
- 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. They may have concerns about the confidentiality of information they send via e-mail or a website.
- Consumers may be confused about the role of the library staff. They might assume that the librarian can advise them on making health care decisions.
- Library staff may be afraid of providing the wrong answer to the health information question.
- Library staff may be concerned about providing negative information to the patron.
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, the librarian's 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 library staff member. Use welcoming behaviors like making eye contact, smiling, and greeting the patron. Provide a private area to discuss confidential topics. If there is not adequate privacy at the reference desk, take the person to the book stacks, an office, or another quiet area. Lower your voice if needed to maintain privacy, and assure the patron that confidentiality will be maintained. Do not discuss any reference interactions with other staff members, unless professional expertise is needed to answer the question.
- Be aware of the person asking the question, but don't make assumptions.
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. Keep your own emotions in check, and remain neutral. Be empathetic, patient, and non-judgmental. Be aware of your own body language.
- 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." 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 vigilant with medication names - some drugs have similar names but very different uses. Searching NLM's Drug Information Portal can be useful; start typing the drug name into the search box and suggested terms will begin to appear.
- 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 explain 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. This includes providing the most current and complete information possible and citing the source. However, some situations pose practical or ethical concerns. For example, some questions are far too broad to answer completely. A patron may ask for "everything you have about diabetes" or some other topic, in which the library staff will need to help the patron narrow down the question. For complex questions, the librarian can work with the patron to break it into manageable "chunks," providing information that can be digested a bit at a time. Offer to take the search to a higher level if the patron desires. Another challenge is that some library staff may feel uncomfortable or unwilling to provide an answer that is perceived to be bad news, such as a diagnosis that is debilitating or even fatal. However, such information should not be withheld; the role of the librarian is to provide the complete answer, not to censor out parts of the answer or to guess that the patron does not want the full answer. It is always appropriate to encourage the individual to discuss the issue with his or her health care provider instead of interpreting the information on their own, since every situation is unique.
- Do not interpret medical information or provide advice.
It is critical that you do not attempt to interpret medical information, provide a diagnosis, or recommend a therapy or intervention. Emphasize to your patron that you are an information professional, not a health professional. Avoid agreeing or disagreeing with what the consumer expresses. Do not offer your own experiences or hearsay about similar medical conditions. 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.
Because library staff cannot provide medical advice, it is always good practice to refer the patron back to his or her health care professional to discuss the information they just received. It is also appropriate to provide access to directories or listings of health professionals and other organizations as needed. Use Health Hotlines (a directory of organizations with toll-free numbers) or MedlinePlus to access Directories and Organizations to find a local, state, or national organization dedicated to a specific health condition or concern. A referral as described is not the same as a recommendation. Do not provide recommendations to any healthcare service providers or organizations.
Print and Online Resources
American Library Association, Reference and User Services Association. Health and Medical Reference Guidelines. http://www.ala.org/rusa/resources/guidelines/guidelinesmedical
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.
Spatz, Michele, ed. "The Medical Library Association Guide to Providing Consumer and Patient Health Information." Lanham, Maryland: Rowman & Littlefield, 2014.