Answering health & medical reference questions: an introduction for information professionals

Answering health & medical reference questions: an introduction for information professionals Dean Giustini, UBC Biomedical Librarian A continuing education workshop for BCLA Lynn Valley Branch North Vancouver District Public Library Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 1

Table of Contents This five (5) hour course focuses on providing background information to answer reference questions in health and medicine. By identifying and using high‐quality sources of health information, many of the skills learned in this workshop will be transferrable to various Canadian library settings. In addition, participants are introduced to key print and electronic sources and various techniques used to evaluate websites ‘on the fly’. I. Introduction II. General health & medical reference questions • “Anatomy of a question” • Break it down into parts • The range of health information • Frequently‐asked questions (FAQs) • Exercises III. Consumer health information IV. Complementary and alternative medicine (CAM) V. Biomedical research Appendices • Current media and video • Collection development and selection tools • Some typical reference questions • Websites consulted during workshop • Bibliography (extensive!) Did you know? You can read about health and medical topics in more depth on my wiki: http://hlwiki.slais.ubc.ca/ Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 2

Answering health & medical reference questions BCLA workshop schedule – November 19th, 2009 I. Introductions & overview of workshop ‐ 30 minutes II. General health and medical reference ‐ 45 minutes III. Consumer health information (CHI) ‐ 45 minutes Lunch @ noon ‐ 60 minutes IV. Complementary and alternative medicine (CAM) 45 minutes V. Biomedical research ‐ 45 minutes Coffee@ 2:45pm ‐ 20 minutes VI. Current media & social software ‐ 30 minutes VII. Wrap‐up & course evaluation ‐ 15 minutes Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 3

Part I ‐ Introduction to workshop The scope of this workshop "Answering health & medical reference questions" comprises three domains that last one‐hour each: 1) consumer health 2) complementary & alternative (CAM) medicine 3) biomedical research. Answering reference questions in health is one of the most challenging areas. What is the best way to provide these library and information services in health? Do you search for the patron yourself? How do you help patrons who become emotional during the reference interview? How will you handle your own emotions in a difficult reference interview? These are some of the issues that are covered in the BCLA workshop. Throughout the workshop, we will discuss free information and fee‐based sources (where a lot of reliable information is found) that are available in public, college and university libraries. In B.C., these tools include the online CPS, the Cochrane Library, OvidSP and Ebsco. Due to search engines, we will be open to the possibilities of Google scholar and PubMed searching. A number of top health websites such as Health Canada and the U.S. National Library of Medicine’s MedlinePlus will be evaluated. Where possible (and logical) a range of print and online tools will be used. One topic we will explore is how print and online sources can be evaluated on the fly and how to match the needs of patrons with specific sources. For advanced questions, the idea of evidence‐based medicine will be discussed. It might come as a surprise that some of the most important resources in this area are now available in Canada for free. Finally, we will have ample opportunity to share strategies with each and ways of refining how to answer health‐related questions. The workshop will be delivered using the following methods: Lecture and presentation style: i.e. introduction to reference in health care; an overview of the Canadian health system and where healthcare is delivered Discussion(s): different kinds of questions that are asked in different libraries; how to analyze a question and decide on the best information source to use; discussion will include opportunities for the kinds of health‐related questions that we deal with regularly in our libraries Demonstration: show how information sources can be found and used appropriately; demonstrate how to use online resources and share ideas on efficient retrieval of health topics Small groups: break into small groups; hand out practice questions and come up with a search strategy; select information sources to address the question; each group can demonstrate their search strategy to the rest of the class. Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 4

Part I (continued) Objectives of the workshop • Recognize the impact of health information on individuals in your community • Name some resources to promote health (and wellness) through information • List the services offered by libraries used to improve health and health information literacy The role of libraries in providing health information “…when asked legal, medical, or business questions, information services staff should make clear their roles as stated in their library’s specialized information services policies…” ALA Reference and User Services Association (RUSA) http://www.ala.org/ala/mgrps/divs/rusa/index.cfm The major role of libraries in Canada is to provide access to reliable information. In medicine, this is related to the idea of providing access to the best evidence. Most reference librarians who answer health and medical questions are responsible for evaluating websites and identifying resources to find information for their user groups. Of course, these groups include patients and their families. Reference services also deal with the retrieval of articles from online databases and current awareness services and social media (i.e. alerts, RSS feeds and podcasts). Health librarians working with doctors are responsible for finding the best medical evidence and assume important roles as advisors and co‐investigators. Traditionally, librarians deliver information services by using their print collections. Now they use their expert search skills to access, sort, evaluate, filter and disseminate online information, too. Printed catalogues and bibliographies, the accessibility of online catalogs and multimedia databases, along with the organizing of the national interlibrary loan systems have widened the range of resources available to libraries. Did you know? …that health information in BC is found in public, college & university libraries (not to mention in pharmaceutical companies, health organizations and hospitals) Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 5

Part II – General health & medical reference “…the right information for the right person at the right time” Anatomy of a question • Break the question down into its various parts • What facets of the question can you identify? o Words, terminologies o Subject or domain • At what level is the question aimed? o layperson, low literacy, expert • What format is needed? Is there anything else you can find out from the patron? Health and medical reference involves finding personal health & wellness information public health & safety diseases & lab tests different formats online, in print, for free and “fee” searching health websites & “Googling” Why is ‘good quality’ information needed in healthcare? “…I trust my doctor, but I’m seeing my medical librarian for a second opinion” Seeing your librarian: • promotes autonomy or self‐care • instills trust in our medical system • can prevent disease and illnesses • helps to inform treatment decisions • can improve relationships with health care providers Frequently‐asked questions (FAQs) • simple facts, definition, abbreviation • diagnosis • “what is” questions; this disease? this test • medical procedures? Descriptions; tests? • in‐depth information about diseases or conditions • research questions • experimental treatments • drug information prescription & over‐the‐counter • alternative medicine; herbal information Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 6

Part II (continued) Ready reference – dictionaries, textbooks, drug resources Dictionaries • BC Health Guide http://www.healthlinkbc.ca • Stedman’s Medical Dictionary (online via Consumer health complete) General medical texts • American Medical Association Complete Medical Encyclopedia • Mayo Clinic Family Health Book (online via Consumer health complete) • Merck Manual of Medical Information (free – easy to understand) http://www.merck.com/mmhe/index.html Drug resources • Medication Info UBC is a drug information service. Lower mainland 604.822.8010 B.C. Toll‐free 800.668.6233 (http://www.pharmacy.ubc.ca/MIUBC/main.htm) • Compendium of Pharmaceuticals and Specialties (CPS) (print & online) • MedlinePlus [US] (English & Spanish) http://www.nlm.nih.gov/medlineplus/ Some key online sources for B.C. Libraries Easy literacy & multilingual BC Health Guide http://www.healthlinkbc.ca Portals and gateways Health Canada (French & English) http://www.hc‐sc.gc.ca/ Public Health Agency of Canada http://www.phac‐aspc.gc.ca/ Food and Drug Administration (FDA) http://www.fda.gov/ Consortia e‐HLBC http://ehlbc.ca/ ELN (B.C.) http://www.eln.bc.ca/dbs/select.php The Cochrane Library http://thecochranelibrary.com Association websites Canadian Health Libraries Association (CHLA/ABSC) http://chla‐absc.ca Consumer and Patient Health Information Section http://caphis.mlanet.org/ Condition‐specific Alzheimer Society of BC http://www.alzheimerbc.org/ Canadian Diabetes Association http://www.diabetes.ca/ Heart and Stroke Foundation http://www.heartandstroke.bc.ca/ Did you know? That UBC Library has four medical libraries and that CISTI in Ottawa is Canada’s science, technical and medical library… Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 7

Part II ‐ What is MedlinePlus? http://medlineplus.gov Librarian recommended site • The U.S. National Library of Medicine, part of the National Institutes of Health, creates and maintains MedlinePlus to help consumers find health information. • MedlinePlus pages contain carefully selected links to web resources with health information on over 800 topics. o The Health Topic pages include links to current news and related information. You can find preformulated searches of the PubMed which allow you to find references to health research. • The A.D.A.M. Medical Encyclopedia brings health consumers an extensive library of medical images as well as over 4,000 of articles about diseases, tests, symptoms, injuries, and surgeries. • The Merriam‐Webster Medical Dictionary allows you to look up definitions and spellings of medical words. • Drug and Supplement Information is available from the American Society of Health‐System Pharmacists (ASHP) via AHFS® Consumer Medication Information, and Natural Standard. o AHFS® Consumer Medication Information provides information for more than 1,000 brand name and generic prescription and over‐the‐counter drugs, including side effects, precautions and storage for each drug. o Natural Standard is an evidence‐based, peer‐reviewed collection of information on alternative treatments. MedlinePlus has over 80 monographs on herbs and supplements. • Interactive tutorials from the Patient Education Institute explain over 165 procedures and conditions in easy‐to‐read language. • MedlinePlus follows a list of guidelines for the inclusion of Web sites; available at http://www.nlm.nih.gov/medlineplus/criteria.html Did you know? That there is no Canadian‐equivalent to MedlinePlus? Perhaps Health Canada and the Public Health Agency Canada are the two closest websites. Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 8

Part II (continued) The Reference Interview • Respect privacy/confidentiality in person and online • Be prepared for any emotions that might arise • Be aware of the patron’s body language • Be empathetic • Listen closely • Use open‐ended questions Challenges in the health reference interview • medical terminology • reference interviews, • e.g. confidentiality, privacy, sensitivity, cultural issues • knowing how much information to get from the patron • not being familiar with the resources • knowing the literacy and “health literacy” level of the person asking In Canada… “…health librarians face a number of additional challenges in the delivery of reference and information services …the fragmentation of our national bibliography and poor indexing of many of our health publications are two challenges that must be overcome… many libraries across the country do, however, offer workshops on retrieving information including where to look for Canadian studies and data.” ‐ UBC Health Library wiki http://hlwiki.slais.ubc.ca/index.php?title=Reference_services More Reference Tips… find a safe, private place for your reference interview use simple everyday “living room” language, e.g. not benign/say ‘not cancer’; not syndrome/say ‘disease or problem’; not insomnia/say ‘cannot sleep’ use phrases such as “I’m sorry” or “This must be difficult” ‐‐ “I’ll try to help you” patrons can be encouraged to discuss information with their health providers conversations with physician and healthcare team are “next step” provide a range of materials for your patrons explain why a resource is best suited to answer their question know the limits of your collection and your expertise Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 9

Part II (continued) Other considerations patrons (i.e. consumers, patients and family) can take control of their health have to make life‐altering decisions – information is critical libraries not as intimidating as health care systems patrons may be afraid to ask questions (i.e. and may not want to bother you) access to hospital libraries may be limited in community (i.e. or no library professional available there) Public librarians are needed to filter information found on the Internet Key: know your community! • Know what online resources are most useful • Participate in consumer health groups locally • Keep your collection in health & medicine up‐to‐date • Make contact with local medical librarians • Offer training for your users/and your staff • Other? Other notable health websites • BC Health Guide http://www.healthlinkbc.ca • Cancer.gov ‐ http://www.cancer.gov ‐ From the National Cancer Institute. Extensive information about types of cancer, clinical trials, statistics, and more. • ClinicalTrials.gov ‐ http://clinicaltrials.gov ‐ the National Library of Medicine's searchable database of clinical trials in which consumers may wish to participate. • FamilyDoctor.org ‐ http://www.familydoctor.org ‐ From the American Academy of Family Physicians. Health information for the whole family. • Health Canada – http://www.hc‐sc.gc.ca/index‐eng.php‐ Health Canada deals with prevention and health promotion to improve the quality of life. • KidsHealth ‐ http://kidshealth.org/ • Lab Tests Online – http://www.labtestsonline.org • MedlinePlus Laboratory Tests ‐ http://www.nlm.nih.gov/medlineplus/laboratorytests.html • Merck Manual of Diagnosis & Therapy ‐ http://www.merck.com/mmpe/index.html • Merck Manual of Geriatrics ‐ http://www.merck.com/mkgr/mmg/contents.jsp • NIH Senior Health ‐ http://nihseniorhealth.gov ‐ the National Institutes of Health's web site for seniors and their care givers. • ToxTown ‐ http://toxtown.nlm.nih.gov/ ‐ the National Library of Medicine's web resource for consumers to understand toxins in their environment. • Yucky Discovery ‐ http://yucky.discovery.com Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 10

Part III ‐ Consumer health information (CHI) What is CHI? “…information designed to help individuals understand their health and [the ability to] make health‐related decisions for themselves and their families… this speaks to the need to develop the “health literacy” in your community.” Patrick and Koss, Consumer health information: white paper http://www.nist.gov/public_affairs/pubs.htm Vision for a health literate Canada “…all people in Canada have the capacity, opportunities and support they need to obtain & use health information effectively, to act as informed partners in the care of themselves, their families and communities & to manage interactions in a variety of settings that affect health & well‐being…” The Canadian Council on Learning (CCL) 2009 http://www.ccl‐cca.ca/CCL/Topic/HealthandLearning Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 11

Part III What is health literacy? According to the Medical Library Association, health literacy is the ability to: • Recognize health information needs • Identify sources & use them to retrieve information • Analyze, understand and use patient information to make health decisions Medical Library Association http://www.mlanet.org/resources/healthlit/define.html also: “…the degree to which people have the capacity to obtain, process and understand health information and services needed to make appropriate health decisions…” Healthy People 2010 http://www.healthypeople.gov/document/HTML/Volume1/11HealthCom.htm In Canada, ‘health literacy’ has been defined as: “…the degree to which people are able to access, understand, appraise and communicate information to engage with the demands of different health contexts in order to promote and maintain good health across the life‐course” ‐ Kwan, Frankish and Rootman, 2006 Who is most likely to have health literacy problems? • People of all backgrounds, especially those with chronic health problems • Most adults read at 6th grade level, 45% below that level • Older people, immigrants and low income families are more likely to have trouble reading and understanding health information Other challenges More than 800 studies have found that health‐related materials in patient education exceed the reading levels of the average adult (Rudd, 2007) One study of health websites in Canada, the U.K. and Australia found that content was written at higher levels than recommended by literacy organizations; lowest level observed was grade 11 (Petch, 2004) Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 12

Part III (continued) Information Rx project Information Rx is a health literacy intervention created by the American College of Physicians and National Library of Medicine (ACP/NLM). Health care providers use Information Rx prescription pads to refer patients to reliable online health information. The goal is to reduce the number of poor quality Internet searches brought to physicians. It saves valuable time, empowers patients and enhances the quality and outcome of interactions between patients and their health providers. For those who do not have access to a computer or need help searching the Internet, libraries offer patients and families free access to the Internet and help finding health information. For more information about Information Rx and to order prescription pads and other Information Rx promotional materials go to www.informationrx.org. Though InfoRx is American in focus, the materials can be tailored to coincide with your library’s mission. For examples, go to www.mlanet.org/resources/healthlit/hil_project.html. For information about Information Rx and promotional materials go to http://foundation.acponline.org/hl/inforx.htm How can libraries support their communities and promote health literacy? • Free access to the Internet • Information Rx Program • Patient information packets • Consumer health collection • Native language resources • Teaching and training • Virtual chat / email assistance • Health literacy workgroup Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 13

Part III (continued) What is Ask Me 3? Ask Me 3 questions campaign of the U.S. National Patient Safety Foundation encourages patients to ask health providers at least three questions during their appointments. It also encourages health providers to answer questions and make sure that they are fully understood by the patient. The questions are: 1) What is my main problem? 2) What do I need to do? 3) Why is it important for me to do this? For more information and to order campaign materials to include in a health literacy information packet or toolkit visit www.npsf.org/askme3 Did you know? Patients and families who want to get involved in improving access to information and new treatments can join the Cochrane Consumer Network http://www.cochrane.org/consumers/about.htm Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 14

Part IV – Complementary and alternative medicine (CAM) What is CAM? Definitions of … Alternative medicine: “…instead of conventional medicine” Conventional medicine “…practiced by medical doctors and allied health professionals such as nurses, pharmacists, physical therapists and psychologists” Complementary medicine: “…in addition to conventional medicine” Integrative medicine: “…combines conventional and CAM treatments in a ‘whole person’ approach that has been shown to be safe and effective” http://nccam.nih.gov/research/camonpubmed/ Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 15

Part IV ‐ Complementary and alternative medicine (CAM) Complementary and alternative medicine (CAM) is an area beset by differing opinions but it is nonetheless a huge part of health care and the economy in the United States and Canada. According to an article in the Journal of Allergy and Clinical Immunology, CAM medicines are used by "more than 80% of the world's population and are becoming an increasing component of the US health care system, with more than 70% of the population using CAM at least once and annual spending reaching as much as $34 billion." CAM is prominent in the work of reference librarians in libraries of all types. The five (5) domains of CAM According to the U.S. National Center for Complementary and Alternative Medicine (NCCAM), CAM is classified into five domains (examples used are NOT exhaustive): 1. Whole medical systems ‐ Ayurveda, Homeopathic Medicine, Naturopathic Medicine and Traditional Chinese Medicine (TCM) 2. Mind‐body medicine ‐ meditation, prayer and mental healing as well as creative therapies using artistic outlets (e.g. dance) 3. Biologically‐based practices ‐ herbs, foods, vitamins and dietary supplements 4. Manipulative and body‐based practices ‐ chiropractic, osteopathic manipulation, Rolfing and massage 5. Energy medicine ‐ Biofield therapies (Qi Gong [chi kung], Reiki, Therapeutic Touch) or Bioelectromagnetic therapies (pulsed & magnetic fields) CAM in Canada Natural health products are federally‐regulated in Canada. The health products regulated are vitamins and minerals, herbal remedies, homeopathic medicines, traditional medicines (e.g. traditional Chinese medicines) and other products like amino acids and essential fatty acids. Health Canada ‐ Natural Health Products Directorate is responsible for ensuring natural health products are safe for use in Canada. Its role is "...to ensure that Canadians have access to natural health products that are safe, effective and of high quality while respecting freedom of choice and philosophical and cultural diversity." The NHP Regulations cover site licensing, manufacturing practices, adverse reaction reporting, clinical trials and labelling. The Canadian Interdisciplinary Network for CAM Research (IN‐CAM) has been established by Dr. Heather Boon at the University of Toronto's Faculty of Pharmacy and Dr. Marja Verhoef, an epidemiologist at the University of Calgary. Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 16

Part IV (continued) Other Canadian organizations These groups work to increase the knowledge base of CAM in Canada: • Cancer Complementary and Alternative Medicine (CCAM) promotes research into the safe, effective evidence‐based use of CAM in cancer treatment • HomeoNet promotes collaboration between homeopaths and researchers • Pediatric Complementary and Alternative Medicine Network (PedCAM) promotes safe and effective use of CAM in children and youth CAM in British Columbia • Health Professions Act (2004 amend.): regulations governing the designation of health professions and their regulatory bodies in BC. List of currently covered professions (see References section) • Example: Naturopathic physicians are regulated by the College of Naturopathic Physicians of British Columbia (CNPBC) which is "...committed to providing safe and ethical standards of professional practice amongst naturopathic physicians of British Columbia. The CNPBC acts in the public interest to ensure the highest quality of naturopathic care." InspireHealth is a Vancouver‐based non‐profit organization whose mission is to provide integrated cancer care for patients and families. Supported by the British Columbia Ministry of Health and other organizations, it emphasizes informed decision‐ making and personal involvement in healing. Comprised of medical doctors and CAM practitioners, InspireHealth is the first organization of its kind in Canada. CAM regulation in the United States Since 1994, natural products (dietary supplements) have been regulated by the Dietary Supplement Health and Education Act (DSHEA). DSHEA creates provisions for: dietary supplements and ingredients; safety; guidelines for information displayed where supplements are sold; how claims of efficacy are communicated; labeling; and Food and Drug Administration (FDA) authority over Good Manufacturing Practices (GMPs). Recently, the Center for Biologics Evaluation and Research (CBER) issued guidance for the industry entitled "Complementary and Alternative Medicine Products and their Regulation by the Food and Drug Administration." According to the FDA, this document represents current thinking on this topic while not limiting the FDA’s jurisdiction. There is uneven regulation of CAM practitioners in the United States with some disciplines licensed and others not; those that are regulated are controlled at the state Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 17

level. In California, acupuncture (and Oriental Medicine) is regulated by the California Acupuncture Board through "licensure, education standards, and enforcement." CAM education in North America Various treatments are taught in schools or by organizations that teach those techniques (e.g. The Boucher Institute of Naturopathic Medicine in New Westminster, BC or The California College of Ayurveda in Grass Valley, California) and 2) medical schools that teach the integration of CAM modalities and philosophies. Until 2000, medical schools that had CAM in the curriculum were listed in the Journal of Alternative & Complementary Medicine. This list is now available at the Rosenthal Center for Complementary and Alternative Medicine. The note on the page says "At the time we archived resources (June 2007) it was rare that conventional medical schools would not offer courses in complementary, alternative or integrative medicine." Canada has its own initiatives such as the Complementary and Alternative Medicine Issues in Undergraduate Medical Education (CAM in UME) Project. Its goal is "...to facilitate high quality and balanced teaching of CAM related issues in undergraduate medical education (UME)." Medical students receive training during the formative years of their education but there is a lack of time devoted to CAM some schools. Many Canadians use CAM so it is important that physicians are informed. A series of articles on CAM educational initiatives in the United States was published the October 2007 issue of Academic Medicine. The series focuses on the NCCAM Education Program where "...the education program grantees discuss the challenges faced and lessons learned in CAM for conventional health care professionals." CAM requires a strong research base to support it. There is a developing body of evidence created by organizations like NCCAM and the International Society for Complementary Medicine Research (ISCMR) to name a few. Journals such as Evidence‐ based Complementary and Alternative Medicine (eCAM) and The Journal of Alternative and Complementary Medicine give researchers a forum to publish their findings. It is important that this continues as the main criticism of CAM is its lack of evidence. Part V ‐ Biomedical research questions Research questions are common in medical libraries. The term biomedicine includes research conducted in medicine, veterinary medicine and the biosciences such as biology, anatomy and pathology. Research in medicine makes it possible to discover new drugs and ways of understanding what causes illness. In fact, research lays the foundation for all treatments in human beings and starts with clinical trials. Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 18

One of the more important movements in biomedicine in the last two decades is evidence‐based medicine. What is evidence based medicine? Put simply, evidence‐based medicine “is the process of evaluating all evidence on a given clinical topic” and not only the evidence found in the major high impact journals. The term "evidence‐based medicine" appeared in the literature in 1992 in a paper by Gordon Guyatt. Although the evaluation of medical procedures and interventions has existed for many years, it was not until the late 20th century that an evidence‐based movement caught fire. The Scottish epidemiologist, Professor Archie Cochrane, promoted EBM principles in his 1972 book Effectiveness and Efficiency: Random Reflections on Health Services. Cochrane's efforts around advocacy has promoted the principles of synthesizing the evidence and applying it to patients. His name is now applied to the centres of evidence‐ based research called Cochrane Centres and the international Cochrane Collaboration. The methodologies used to determine "best evidence" were established in Canada at McMaster University and led by Professors David Sackett and Gordon Guyatt. For more information about EBM, see: http://hlwiki.slais.ubc.ca/index.php/Evidence‐ based_health_care Key medical databases & search engines • electronic Health Library of BC ‐ http://ehlbc.ca/databases/ • The Cochrane Library http://thecochranelibrary.com • Medline OR PubMed ‐ http://pubmed.gov • Google scholar ‐ http://scholar.google.com • WorldCat – http://worldcat.org Part V ‐ Health‐specific search engines • Google Health Co‐op • Hakia – http://hakia.com • Healia – http://healthline.com • Healthline – http://healthline.com • Kismet – http://kismet.com • Medstory – http://medstory.com • Vimo – http://vimo.com Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 19

Part VI ‐ Current media and video In 2009, social networking sites for health consumers have reached a critical mass. Sites such as Patients like me http://www.patientslikeme.com/ and Wikipatient http://wikidoc.org/index.php/WikiPatient allow health consumers to come together to share their experiences and to learn from one another. Inspire http://www.inspire.com/ is a site that provides health consumers with a range of health and wellness groups for practical and emotional support. Sites like Revolution Health http://www.revolutionhealth.com have a range of online communities for a variety of medical conditions. Care Pages http://www.carepages.com allows health consumers to create websites and to share the love of blogging within a community. While the quality of some information generated by consumers on sites such as Wikipedia and other health wikis should be evaluated, there is some evidence to suggest that user generated information is getting better and more accurate all the time. Some recent studies show that health consumers trust other consumers more than their own doctors; one survey even found that 40 percent of respondents said they resorted to looking for medical information on the internet because their doctors would not take the time to answer their questions. As we have seen with the rise of search engines such as Google, and a whole range of health search engines, there are numerous ways of finding a lot of information on the web. If you are interested in exploring some of websites known as Health 2.0 see Appendix I or the sites listed here: http://medical20index.com/ . Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 20

Appendix I ‐ Current media and social software Recommended Physician 2.0 websites • MyDoctor health portal ‐ http://www.mydoctor.ca • Sermo ‐ http://www.sermo.com/ Consumer health 2.0 ‐ social networking sites • CareFlash ‐ http://www.careflash.com/ • Care2 ‐ http://www.care2.com/ • Curetogether ‐ http://www.curetogether.com/ • DailyStrength ‐ http://dailystrength.org/ • e‐Patients ‐ http://e‐patients.net • FitBit ‐ http://www.fitbit.com/ • HealthChapter ‐ http://healthchapter.com/ • HelloHealth ‐ http://www.hellohealth.com/ • iGuard ‐ http://iguard.org/ • Inspire ‐ http://www.inspire.com/ • It runs in my family ‐ http://www.itrunsinmyfamily.com/ • Konnects ‐ http://konnects.com • MDJunction ‐ http://www.mdjunction.com/ • PatientsLikeMe ‐ http://patientslikeme.com/ • PsychCentral – http://psychcentral.com/ • RevolutionHealth ‐ http://www.revolutionhealth.com/ • SecondLife – http://secondlife.com/ • SoberCircle ‐ http://www.sobercircle.com/ • Trusera ‐ http://www.trusera.com/health/ • Wellsphere ‐ http://www.wellsphere.com • Webicina.com ‐ http://www.webicina.com/ Personal life 2.0 & genetics tracking • eHealthMe – http://www.ehealthme.com/ • FitBit ‐ http://www.fitbit.com/ • GenePartner ‐ http://www.genepartner.com/ • Geni ‐ http://www.geni.com/ • GoogleHealth – http://www.google.com/health/ • It runs in my family ‐ http://www.itrunsinmyfamily.com/ • Keyose.com – http://keyose.com/ • LifeMojo ‐ http://www.lifemojo.com/ Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 21

• Medsphere ‐ http://medsphere.org/ • Microsoft HealthVault ‐ http://www.healthvault.com/ • Medziva ‐ http://www.medziva.com/ • My Digital Health ‐ http://www.mydigitalhealth.com • MyFamilyHealth ‐ http://www.myfamilyhealth.com/home • 23andMe ‐ https://www.23andme.com/ Video‐sharing sites in health and medicine • AnatomyTV ‐ http://www.anatomy.tv/tour.aspx • BioScreencast ‐ http://bioscreencast.com/ • BlipTV ‐ http://blip.tv • CDC‐TV ‐ http://www.cdc.gov/CDCtv/ • DAVEProject ‐ http://daveproject.org/index.cfm • DNA Tube ‐ http://www.dnatube.com/index.php • Doctor's Channel ‐ http://www.thedoctorschannel.com/ • ECHO Journal ‐ http://www.echojournal.com/ • eMedTV ‐ http://www.emedtv.com/ • EyeTube ‐ http://eyetube.net/ • HealthDay @ MedlinePlus ‐ http://www.nlm.nih.gov/medlineplus/newsbydate.html • HowCast ‐ http://www.howcast.com/categories • icyou ‐ http://icyou.com/ • Insidermedicine ‐ http://insidermedicine.com/ • JOVE ‐ http://www.jove.com/ • LabAction ‐ http://www.labaction.com/ • Meddio ‐ http://www.meddio.com/ • MedlinePlus – http://medlineplus.gov • MEDTing ‐ http://medting.com/ • MedicalVideos.us ‐ http://www.medicalvideos.us/ • ORLive, Inc. ‐ http://www.orlive.com/ • ScienceCentral ‐ http://www.sciencentral.com/video/ • ScienceHack ‐ http://sciencehack.com/ • SciVee ‐ http://www.scivee.com • SecondSlide ‐ https://www.secondslide.com/ • TeacherTube ‐ http://www.teachertube.com/ • Veezyon ‐ http://veezyon.com/ • VideoJug ‐ http://www.videojug.com/ • VideoMD ‐ http://www.videomd.com/ • VuMedi ‐ http://www.vumedi.com/ • YouTube ‐ http://youtube.com Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 22

Appendix II ‐ Collection development The types of health information collected by libraries Despite an increasingly open and extensive corpus of electronic information on the web, librarians across Canada continue to provide basic print‐based services and collections in their libraries. These services include reference services in‐house and virtually, tours, health programs and, increasingly, assistance with searching for health information online. Internet instruction in Canadian libraries has greatly expanded due to the explosion of web‐based information and the range of language formats now available. The selection and maintenance of print and electronic book and journal collections are two of the most important activities for librarians. Some important issues that librarians collecting health information must deal with are: • What is my annual collections budget? • What is most‐needed in my immediate community of users • What is the overall scope of the existing health and medical collections • How do I balance the need for print and online resources • How will free information be balanced against fee‐based resources • How will I determine different content in print versus online versions • How do I deal with duplication of identical sources, multiple vendors, online access and authentication, adaptability of database interfaces As physical libraries change from housing print to more digital content, librarians must find ways to perform outreach to their users. One of the primary challenges for librarians is the proliferation of medical knowledge and evidence due to advances in biomedical research. Changes in information cycles are often linked to how physicians are trained, how they practice and carry out their research; ultimately, this has an impact on the maintenance of knowledge in different medical disciplines and consequently how health librarians build collections. Evaluation criteria for collection development • Needs of primary clientele; clinical or research medicine • Relevance of subject to users; Canadian content? • Cost‐effectiveness: cost of edition? digitized? Free on the web? • Reading and literacy level • Reputation and authority of authors, producers; publishers, editions • Confidence in publisher or producer • Currency and validity of information and updates • Access and network capacity: access preferably using passwords • Uniqueness and completeness of information Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 23

• Added‐value and advantages over other formats • Technical ease and accessibility • Legal issues including licensing requirement and restrictions • Copyright • Archival issues ‐ availability, cost, limitations, storage, etc. • Availability and quality of documentation • Vendor's reliability in customer support, quality of training programs • Usage and/or limit access can be monitored Selection aids and tools Librarians rely on certain selection tools and trends in order to build timely, relevant collections for their users. These mechanisms include but are not limited to: • Tracking current topics in the community (i.e. H1N1, infectious diseases) • Recent questions asked at the reference desk, online, virtual reference, etc. • Reviews of books in journals and newspapers • Approval books and slips • Publisher catalogues • Recommendations from patrons and other library professionals • Standard lists, e.g., Doody's, CLA • CAPHIS, Consumer and Patient Health Information Section (Medical Library Association) http://caphis.mlanet.org/ • Stock lists from major vendors • Interlibrary loan requests • Consumer health books – a core collection that can be purchased for about $2000 dollars CDN. http://chis.wikidot.com/chi‐core • Canadian distributors and newsletters, e.g., Login Brothers Canada http://login.ca Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 24

Appendix III Health & medicine ‐ some typical reference questions 1) Is ColdFX approved for use in Canada? What is it? 2) Can you find me some information on imitrex? (a drug) 3) How many servings of fruit should I have a day? 4) I need a definition for Alzheimer’s. Can you recommend a good print dictionary? 5) I need a definition and the origin of (who named?) Alzheimer’s disease. 6) My dad had a heart attack recently but speaks Punjabi. Can you help me find information for him in his mother tongue? 7) Is the H1N1 vaccine safe? I am worried about side‐effects. 8) Can you find information for my son about ‘heart murmur’? 9) My mom needs an overview of ‘bursitis’ including pictures 10) In Canada, is bottled water safer than tap water? 11) Is it safe to buy prescription medicines online? 12) What are some of the side effects of taking anabolic steroids? 13) My father is having a knee replacement. Do you have any videos on this topic? 14) What does basal cell carcinoma look like? 15) Do cell phones cause cancer? 16) What is high blood pressure? 17) What is considered to be a healthy diet for an 18 year old male athlete? 18) What are the real health benefits of yoga? I hear it can lower heart‐rate. 19) How often should I have my cholesterol level checked? Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 25

20) I am trying to lose weight. What is the safe amount to lose per week? Complementary and alternative (CAM) health 21) My mother is always praying to stay health. Is there any proof that praying helps? 22) Does gingko really prevent dementia? 23) Do you have any books or videos on Qi Gong? 24) I have glaucoma; can I take ginkgo instead of my prescription? 25) The doctor says I have osteoporosis. Can I take a supplement? 26) Will acupuncture help heal Achilles tendonitis? 27) My daughter has “autism spectrum” disorder. Can I provide a special diet for her? 28) What is coronary heart disease; can it be prevented? Is heart disease inherited? 29) I am feeling very stressed these days. Can Reiki help me to relax? Biomedical questions 30) What is body mass index? Does a high BMI cause disease? 31) Is there any real medical evidence that acupuncture is beneficial? 32) Can you help me find some research about “Munchausen’s syndrome by proxy”? 33) How do I find some research on LASIK surgery? Is it safe? 34) My friend has Stage IV lung cancer. Can she enroll in a clinical trial? 35) My sister in Richmond has diabetes. Are there online support groups she can join? Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 26

Appendix IV – Website evaluation What to look for in an informative health website • Authority, transparency • Consider the source— who is responsible for the website? content? • Focus on information quality—is the information reviewed? how often? • Be skeptical — check any information on the web in two+ sources • Look for evidence—rely on medical research, not opinion • Check for currency—check dates on documents • Beware of bias, jargon, technical language • Protect your privacy—is your information kept confidential? • Consult with your health professional Quick! Quality Information Checklist http://www.avon.k12.ct.us/enrichment/Enrich/quickgr4‐0.htm QUICK! is designed to help students evaluate health information. The criteria can be applied to all kinds of health information and websites: • Is it clear who has written the information? • Are the aims of the website clear? • Does the website achieve its aims? • Is the website relevant to me? • Can the information be checked? • When was the website produced? • Is the information biased in any way? • Does the website tell you about options open to you? Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 27

Website evaluation & rating tools • Consumer Reports Webwatch Guidelines http://www.consumerwebwatch.org/consumer‐reports‐webwatch‐guidelines.cfm • Discern http://www.discern.org.uk • Health Ratings http://healthratings.org • HON Code of Conduct ‐ http://www.hon.ch/HONcode/Conduct.html This site explains the principles of an ethical and high‐quality health Web site as stated by the Health on the Net (HON) Foundation. • Internet Detective ‐ online tutorial designed for university students. The site leads you through exercises to learn how to assess information on the web. http://www.vts.intute.ac.uk/detective/ • MedlinePlus Guide to Healthy Web Surfing ‐ http://www.nlm.nih.gov/medlineplus/healthywebsurfing.html • NLM Evaluating Internet Health Information (Online Tutorial) • http://www.nlm.nih.gov/medlineplus/webeval/webeval.html • Patient 101: How to Find Reliable Information • http://www.jointcommission.org/GeneralPublic/patient_101.htm • Wired for Health ‐ information for teachers and links to other sites on health issues http://www.wiredforhealth.gov.uk Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 28

Appendix VI – Websites consulted during BCLA workshop I. General health information Dictionaries • Dorland's Illustrated Medical Dictionary • MedlinePlus ‐ http://www.nlm.nih.gov/medlineplus/mplusdictionary.html o NLM Medical Words Tutorial http://www.nlm.nih.gov/medlineplus/medicalwords.html • Stedman's ‐ http://www.stedmans.com/section.cfm/45 Directories • [B.C.] Medical directory (Find a physician) ‐ https://www.cpsbc.ca/ • Canadian medical directory (print only) • Red Book Online ‐ http://www2.vpl.vancouver.bc.ca/redbook/ Diseases & syndromes • MedlinePlus, National Library of Medicine ‐ http://www.nlm.nih.gov/medlineplus/ • Stedman's Medical eponyms (GoogleBooks) • Who Named It? Eponyms/Biography Online ‐ http://www.whonamedit.com/ II. Medical textbooks • Gray's Anatomy, Classic 1918 edition ‐ http://www.bartleby.com/107/ • Grant's Atlas of Anatomy ‐ GoogleBooks • Current Medical Diagnosis & Treatment ‐ GoogleBooks • Free Books For Doctors ‐ http://www.freebooks4doctors.com/ • MedicalStudent.com ‐ http://www.medicalstudent.com/ • Merck Manual of Diagnosis & Therapy ‐ http://www.merck.com/mmpe/index.html • Merck Manual of Geriatrics ‐ http://www.merck.com/mkgr/mmg/contents.jsp • Merck Manual of Medical Information (easier to understand) http://www.merck.com/mmhe/index.html • Merck Veterinary Manual ‐ http://www.merckvetmanual.com/mvm/index.jsp III. Drugs • CPS ‐ Compendium of pharmaceuticals. (Canada) • DailyMed ‐ http://dailymed.nlm.nih.gov • Drug Information Portal (NLM) ‐ http://druginfo.nlm.nih.gov Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 29

• MedplinePlus ‐ Drugs, supplements & herbal http://www.nlm.nih.gov/medlineplus/druginformation.html • PDR® Guide to Over the Counter (OTC) Drugs (Merck Source) Lab tests • LabTestsOnline ‐ http://www.labtestsonline.org/ • Medical Tests UCSF Children's Hospital ‐ http://www.ucsfchildrenshospital.org/tests/index.html • MedlinePlus Laboratory Tests ‐ http://www.nlm.nih.gov/medlineplus/laboratorytests.html IV. Medical research • Medline OR PubMed ‐ http://pubmed.gov • Google scholar ‐ http://scholar.google.com • Scirus ‐ http://scirus.com • electronic Health Library of BC ‐ http://ehlbc.ca/databases/ Public health • Canada's Food Guide ‐ http://www.hc‐sc.gc.ca/fn‐an/food‐guide‐aliment/index‐ eng.php • Health Canada ‐ http://www.hc‐sc.gc.ca/index‐eng.php • Household Products Database ‐ http://householdproducts.nlm.nih.gov/ • Public Health Agency of Canada ‐ http://www.phac‐aspc.gc.ca/index‐eng.php • Healthfinder, US Government ‐ http://www.healthfinder.gov/ • Mayo Clinic.com ‐ http://www.mayoclinic.com/ Associations • Canadian Organization for Rare Disorders http://raredisorders.ca/ V. Health statistics • BC Cancer Statistics ‐ http://www.bccancer.bc.ca/HPI/CancerStatistics/default.htm • BC Chronic Disease Management statistics ‐ http://www.health.gov.bc.ca/cdm/research/index.html • BC Medical Services Plan (MSP) facts and statistics ‐ http://www.health.gov.bc.ca/msp/facstat.html • BC Statistics site ‐ http://www.bcstats.gov.bc.ca/ • Canadian Institute for Health Information (CIHI) ‐ http://cihi.ca Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 30

• Guide to Health Statistics in Canada ‐ http://www.statcan.gc.ca/pub/82‐573‐ g/index‐eng.htm • National Center for Health Statistics (US) ‐ http://www.cdc.gov/nchs/ • World Health Organization (WHO) Statistical Information System ‐ http://www.who.int/whosis/en/ Kid‐friendly health sites • Body & Mind ‐ http://www.bam.gov/ • GirlsHealth ‐ http://girlshealth.gov • KidsHealth ‐ http://kidshealth.org/ • My Pyramid ‐ http://mypyramid.gov/kids • ToxMystery ‐ http://toxmystery.nlm.nih.gov/ • Yucky Discovery ‐ http://yucky.discovery.com Answering health & medical reference questions, BCLA Workshop, 2010 (Giustini) p. 31

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Answering health & medical reference questions: an introduction for information professionals

by Dean Giustini on Jan 25, 2010

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