Consumer Health at the Reference Desk

1. Consumer Health at the Reference Desk Sarah Carnes, MLIS, AHIP, Bedford VA Medical Center

2. Sarah L. Carnes, MLIS, AHIP Medical Service Corps Officer, US Army Strategic Planner for Emergency Preparedness in a Corporate Healthcare System Adjunct Instructor and Consultant, National Emergency Response and Rescue Training Center, Planner, Trainer, Consultant, private company Library School: focus on research and health information Medical Librarian, Veterans Health Administration

3. Access and Packaging

4. US Army: publications, data Corporate Healthcare System: open access, grey lit, direct contact National Emergency Response and Rescue Training Center: Texas A&M library Private company: open access, grey lit, corporate publications Library School: UW library Medical Librarian, Veterans Health Administration: VA Library Network and regional medical library

5. Access and Packaging

6. Packaging and Access

7. Issues related to Health Information Access and Packaging Volume Relevance Credibility Currency Taxonomy/Vocabulary Applicability/Practicality Accessibility Awareness Comfort Fear Cost Health Literacy is the degree to which a person has the capacity to obtain, communicate, process, and understand basic health information and services in order to make appropriate health decisions. ALA: http://www.ala.org/pla/initiatives/healthliteracy CDC: https://www.cdc.gov/healthliteracy/learn/index.html ODPHP: https://health.gov/communication/about.asp

8. Issues related to Health Information Access and Packaging Negative Outcomes of Online Consumer Health Information We identified three negative outcomes of OCHI based on participants’ use of it (Table 5). First, increased worrying as a result of finding “scary” or worse-case-scenario information that might or might not be relevant to their symptoms. Second, tension in the relationship with a family member because the latter’s use of potentially harmful OCHI. Finally, postponing seeking medical help for a health problem, or to ignore their health problem altogether. El Sherif, R., Pluye, P., Thoër, C., & Rodriguez, C. (2018). Reducing negative outcomes of online consumer health information: Qualitative interpretive study with clinicians, librarians, and consumers. Journal of Medical Internet Research, 20(5), e169. doi:10.2196/jmir.9326

9. Solutions Medical Librarians: There are about 2645 in the US National Network of Libraries of Medicine (NNLM): 5600 member institutions National Library of Medicine at NIH MLA: https://www.mlanet.org/p/cm/ld/fid=53

10. http://www.ala.org/pla/initiatives/healthliteracy

11. Public Library Health: https://publiclibrary.health/Consumer Health Information Specialization: https://nnlm.gov/national/guides/obtain-specialization/consumer-health-information-specialization

12. The Health Information Reference Encounter

13. The Environment “Hamilton Grange, Information and reference desk” by D.P.W. and scanned by NYPL is in the public domain

14. The Environment—Factors to consider Privacy Visibility Sound Barriers Disruption

15. The Conversation Emotions Vulnerability Confusion Patience (lack thereof) Urgency

16. The Conversation Emotions Vulnerability Confusion Patience (lack thereof) Urgency These apply to the patron and the library staff member

17. The Conversation • Be mindful of: • Body language • Facial expressions • Responses • Communication skills • Physical and cognitive challenges • Literacy challenges

18. The Conversation • Listen for and ask for: • What is the health concern? • What is the intervention, treatment, medication, or therapy of interest? • How much time do they have for you to search with them present?

19. The Conversation • Listen for and ask for: • Who is the “patient”? • Age, gender, other concerns and challenges, military status • What is the purpose of their question? • What information do they hope to find? • Where have they already looked?

20. The Conversation What kind of questions can you expect? Any and all if you make people feel safe and welcome.

21. The Resources • MedlinePlus.gov - https://medlineplus.gov/ • This site provides reliable health information on a wide range of topics in English and other languages. A great place to start is the “Health Topics” section. • MedlinePlus Evaluating Health Information - https://www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.htmland • Guide to Healthy Web Surfing - https://medlineplus.gov/healthywebsurfing.html • MedlinePlus.gov – Health Topics: Veterans and Military Health - https://www.nlm.nih.gov/medlineplus/veteransandmilitaryhealth.html • Website Tour: http://www.nlm.nih.gov/medlineplus/tour/tour.html • Easy-to-read materials: • http://www.nlm.nih.gov/medlineplus/easytoread/easytoread_a.html

22. The Resources • Lab Tests Online: http://www.labtestsonline.org • This is a very good website for information about lab tests. It uses easy-to-understand language and one can search by disease or by the name of the test. • Example: “The doctor prescribed a lipid profile for my wife. What is he looking for?” • Scroll down to lipid profile on the right. The results of the search describe the test, normal values and ends with common questions about the test.

23. The Resources • Clinical trials: Clinical Trials: www.clinicaltrials.gov • ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions. A clinical trial is a research study in human volunteers to answer specific health questions. You can search clinical trials by condition, location, age, trial phase, and sponsor.

24. The Resources Genetics Home Reference: http://www.ghr.nlm.nih.gov Developed by the National Institutes of Health and the National Library of Medicine, this website has quality health information about genetic conditions and passing genetic information from one generation to the next. You can search genetic conditions, genes, chromosomes, and find genetic support services.

25. The Resources ToxTown: http://www.toxtown.nlm.nih.gov ToxTown is an interactive guide to commonly encountered toxic substances, your health, and the environment. ToxTown helps users explore a Port, Town, City, Farm, or US-Mexico Border community to identify common environmental hazards. Available in English and Spanish.

26. The Resources Household Products Database: http://hpd.nlm.nih.gov/ What's under your kitchen sink, in your garage, in your bathroom, and on the shelves in your laundry room? Learn more about what's in these products, about potential health effects, and about safety and handling. A database in partnership with the National Library of Medicine.

27. The Resources U.S. Food and Drug Administration: FDA.gov The FDA is responsible for helping the public get the accurate, science-based information they need to use medicines and foods to improve their health. This site from the U.S. Food and Drug Administration has a wide variety of information on food and drug safety. FDA Drug page: http://www.fda.gov/Drugs/default.htm The drug page has a wide variety of information including specific drugs, recalls and safety alerts.

28. The Resources Healthcare 411 – http://healthcare411.ahrq.gov Healthcare 411 is a news series produced by the Agency for Healthcare Research and Quality (AHRQ), part of the U.S. Department of Health and Human Services. AHRQ’s mission is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. AHRQ is the lead Federal agency in the effort to improve patient safety and reduce medical errors. This innovative tool provides consumers with information they can use to improve the quality of their health care. Download the programs to your mobile media player or computer by subscribing on the site. The AHRQ subscription is free. Healthcare 411 features and programs range from 2 to 10 minutes in length. All new and archived items remain available on the Healthcare 411 site.

29. The Resources Contact me at Sarah.Carnes@va.gov for a copy of my compilation of resources for CHI

30. The Response Consider: Can you answer the question accurately and within the scope of your capabilities? Who else can assist? Should you demonstrate how to find the information? Should you document this process? What format is optimal? Email, printed out, large text, language

31. The Response Consider: Does the information answer their question sufficiently? Are there additional sources that might be of use? Who else needs this information? Is your patron satisfied with the information? Can and should you follow up?

32. Concluding the Interview • Provide the materials in the format(s) that are most appropriate. • Ask if they want to take time to review the materials. • Ask if they want to ask any additional questions. • Ask if they need time to themselves.

33. Concluding the Interview • When they depart, do demonstrate support and understanding. • Do not be overly familiar. • Do not talk about it with others; respect privacy. • Be aware of secondary trauma. • Record your notes about topic and answers but protect privacy.

34. Sarah Carnes Sarah.Carnes@va.gov