Answering health and medical reference questions

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  • (Sjogren’s syndrome) Varicella Zoster = chicken pox virus
  • 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 and medical reference questions

    1. 1. An introduction to consumer health reference services in Canada: high-quality information sources & actual practice questions Dean Giustini, UBC Biomedical Librarian UBC Library UBC iSchool Adjunct faculty An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 1
    2. 2. Table of Contents This manual focuses on providing background information so that you can begin to answer basic (to intermediate difficulty) reference questions in consumer health. Student librarians are introduced to key print and electronic sources and various techniques used to evaluate websites ‘on the fly’. By identifying and using high-quality sources of information, the skills you learn by working through this manual will be transferable to other library settings such as public libraries. I. Introduction p3 II. General health & medical reference questions 5  “Anatomy of a question”  Break it down into parts  The range of health information  Frequently-asked questions (FAQs)  Exercises III. Consumer health information 9 IV. Complementary and alternative medicine (CAM) 13 V. Advanced consumer reference questions - Biomedical research 17 Appendices 19 - 27  Current media and video  Collection development and selection tools  Some typical reference questions  Websites consulted  Consumer resources available at BC Libraries You can read about health and medical topics in more depth on the health library wiki http://hlwiki.slais.ubc.ca An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 2
    3. 3. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 3 Introduction The manual deals with three major service areas of health librarianship: 1. consumer health 2. complementary & alternative (CAM) medicine 3. biomedical research Each of the above service areas has its own sources of information and user groups with distinct information needs. However, there is considerable overlap in terms of the sources and needs associated with each group. Answering reference questions in consumer health is one of the most challenging and rewarding areas of health librarianship. What is a basic source of information in health and medicine?  How do you provide library and information services to patients and consumers who need information?  Do you provide a range of items and present them? Do you perform searches?  Can you help patients who are emotional during the reference encounter?  How will you manage your own emotions during difficult reference situations? These are a few of the issues that we will cover in this manual. Throughout, I point out many of the major free and fee-based sources of information in health and medicine but I encourage you to explore whether they are available in your local public, college or university library. In BC, these tools include online equivalents for print such as the CPS (the list of drugs in Canada), Cochrane Library (systematic reviews) and government sites. Due to the common use of search engines, we examine Google scholar and PubMed as needed. In terms of websites in consumer health, see the Top Ten (10) Canadian health websites, Health Canada and the Public Health Agency of Canada (PHAC). MedlinePlus is always a good choice. When possible, use print and online resources. One topic we explore in this manual is how to evaluate print and online sources on the fly, and how to match the information needs of our different user groups to sources of information. For some advanced questions, the idea of evidence-based practice is introduced. It might come as a surprise to some that many EBM resources are available for free on the web. Some sources for consumers are free. We will have opportunities to share strategies and ways of refining health questions and which sources of information are best suited to answering which questions. 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) The major role of library and information services is to provide access to reliable information. In medicine, this translates into providing access to the best medical evidence based on clinical
    4. 4. trials specifically the randomized controlled trial. This information is usually found in the medical database MEDLINE but some reference questions require the consultation of print sources. Consequently, it’s wise to learn how to evaluate reference sources and learn their structure. In health care, reference services are provided by medical libraries. Reference librarians who provide services in health and medical may also need to help users evaluate websites for credibility. Health librarians working with doctors are responsible for finding the best medical evidence and assume important roles as advisors and co-investigators in research; however, sometimes it may be important to step back and look at more background on a topic. Traditionally, health librarians have delivered much of their library and information services by using their print materials. Now they require expert skills to access, sort, evaluate, filter and disseminate information. Printed lists and bibliographies, online catalogues and multimedia tools, along with our interlibrary loan systems have widened the range of resources available. Did you know? Health information in BC is found in public, college & university libraries not to mention pharmaceutical companies, health organizations and hospitals? To begin your exploration of medical terminology, take a look at the dictionaries below. Dorland’s Illustrated medical dictionary. Philadelphia: Saunders. Considered “the dean" of medical dictionaries. Comprehensive and authoritative, it is updated every few years. It is available in most academic, public and health libraries in the dictionary area Stedman’s Medical Dictionary. Baltimore: Williams & Wilkins. Similar to Dorland’s and essentially equal in authority (health libraries will generally have both but some have one or the other). Published approximately every five years Merriam-Webster's medical desk dictionary http://www.nlm.nih.gov/medlineplus/mplusdictionary.html . Type in your word, review the definition and select terms suggested in the list of related terms. Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health. Philadelphia: Saunders. Designed for use by nurses and allied health professionals, this is on a level accessible to the layperson. Some line drawings. Understanding medical words. http://www.nlm.nih.gov/medlineplus/medicalwords.html is a very handy tutorial from the National Library of Medicine for those who want to teach themselves about medical vocabulary and how word parts fit together to make medical terms. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 4
    5. 5. Part II – General health & medical reference questions “…the right information for the right person at the right time” Anatomy of a question  Break the question down into parts  What facets can you identify? o Words, terms, roots o Greek & Latin prefixes, suffixes o Subjects, “areas” or domains  At what level is the question aimed? o layperson, low literacy, expert level  What format is needed? Is there anything else you can find out from the patron? Frequently-asked questions (FAQs)  simple facts, definitions, abbreviations  diagnosis of a condition  in-depth information about diseases or conditions  “what is” questions; this disease? this test?  Why is my nurse or doctor asking these questions?  medical procedures? Descriptions; tests?  research questions  experimental treatments  drug information  prescription & over-the-counter  alternative medicine; herbal information Health and medical reference questions can fit into a range from:  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 ‘good quality’ information is needed in healthcare … “…I trust my doctor, but I’m seeing my medical librarian for a second opinion” An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 5
    6. 6. The reference interview in health & medicine  Don’t provide advice, provide information  Respect privacy/confidentiality in person and online  Be prepared for any emotions that might arise  Be aware of the patron’s body language  Be empathic, 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 Why see a health librarian?  Because it promotes autonomy or self-care  Instills trust in our medical system  Can help to prevent disease and illnesses  Helps to inform treatment decisions  Can improve relationships with health care providers 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.” "...traditionally, the medical [library] has been used by both clinicians and researchers as the preferred vehicle for keeping up with the latest developments in their respective fields. The contents of medical journals have been systematically indexed for more than 100 years. The role of the journal in the biomedical communication cycle is self -evident, and that role has been expanded profoundly by automated information retrieval." Brandon & Hill. Selected list of books and journals for the small medical library. BMLA. 1985. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 6
    7. 7. Some key online sources for BC Libraries Easiest literacy & multilingual BC Health Guide http://www.healthlinkbc.ca Portals and gateways Canadian Virtual Health Library http://cvhl.ca/ 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 Association websites Canadian Health Libraries Association (CHLA/ABSC) http://chla-absc.ca Consumer and Patient Health Information Section http://caphis.mlanet.org/ Condition-specific Canadian Diabetes Association http://www.diabetes.ca/ Heart and Stroke Foundation http://www.heartandstroke.bc.ca/ Other notable health websites  BC HealthLink 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 - American Academy of Family Physicians websites for the whole family.  Health Canada – http://www.hc-sc.gc.ca/ 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 Labs 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 An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 7
    8. 8. More Tips for the Reference Interview Find a safe, private place for your reference interview (if needed) Use simple language, e.g. not benign/say ‘not cancer’ Don’t say syndrome/say ‘disease or problem’; not insomnia/say ‘cannot sleep’ Reassure. Use phrases such as “I’m sorry” or “This must be difficult” -- “I’ll try to help” 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 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 Health librarians: 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 Did you know? MedlinePlus? http://medlineplus.gov Librarian recommended site The U.S. National Library of Medicine maintains MedlinePlus to help consumers find health information that they can access and understand easily. The ADAM Medical Encyclopedia brings health consumers a library of medical images and 4,000+ articles about diseases, tests, symptoms, injuries, and surgeries. See also the many Interactive tutorials. An introduction to consumer health reference services – Other considerations a manual for LIBR534 Health information sources & services , 2014 8
    9. 9. 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 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 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 An introduction to consumer health reference services – What is health literacy? a manual for LIBR534 Health information sources & services , 2014 9
    10. 10. Who is most likely to have health literacy issues?  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 An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 10 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) 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 providers use Information prescription pads to refer patients to reliable 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 providers. For those who do not have access to a computer or need help searching the Internet, libraries offer patients and families free access and help finding health information. For more information about Information Rx and to order promotional materials go to http://www.informationrx.org. For example, 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  Patient information packets  Consumer health collection  Native language resources  Virtual chat / email assistance
    11. 11. What is Ask Me 3? The Ask Me 3 is an American campaign administered by the U.S. National Patient Safety Foundation; it encourages patients to ask health providers at least three questions during their medical appointments. The program encourages health providers to answer questions and ensure they are fully understood by the patient. (There is no similar program in Canada.) An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 11 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: http://www.npsf.org/for-healthcare-professionals/ programs/ask-me-3/ask-me-3-resources/
    12. 12. Almost there: the rise and fall of the Canadian Virtual Health Library The Canadian Virtual Health Library / Bibliothèque virtuelle canadienne de la santé (CVHL / BVCS) was a project that received $800,000 worth of funding from the Canadian Institutes of Health Research (CIHR) during a four-year period from 2009-2013. The goal was to create a national virtual health library, and Jennifer Bayne was appointed as the CVHL Project Leader. In 2013, the funding ran out and the project went on hiatus. From the outset, the vision of the CVHL was to: contribute to improved health care and health promotion by making readily accessible, high-quality health information and evidence universally available to Canadian health care practitioners and health professionals for decision-making, policy and program development, research, continuous learning and professional development. The CVHL will contribute to effective and efficient operation of Canada's health care system by ensuring equitable access to health information and optimizing use of resources through coordination of existing services across the country. http://hlwiki.slais.ubc.ca/index.php/Canadian_Virtual_Health_Library_/_Biblioth%C3%A8que_vi rtuelle_canadienne_de_la_sant%C3%A9_%28CVHL_/_BVCS%29 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 An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 12
    13. 13. 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/ An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 13
    14. 14. Part IV - Complementary and alternative medicine (CAM) Complementary and alternative medicine (CAM) is an area beset by differing opinions (and even controversy) but is nonetheless a huge part of health care delivery 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 many types of libraries. 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) An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 14 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) was established by Drs. Heather Boon at the University of Toronto and Maria Verhoef, University of Calgary. Office of Cancer Complementary and Alternative Medicine (OCCAM) 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
    15. 15.  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. InspireHealth is supported by the BC Ministry of Health and other organizations and emphasizes informed decision-making for patients and a more active, 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 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. 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. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 15
    16. 16. 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 its practice. Thankfully, in 2014, there is a growing body of evidence to support CAM which is created by organizations such as NCCAM and the International Society for Complementary Medicine Research (ISCMR) . Two 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. Located in the heart of New Westminster, British Columbia, the Boucher (pronounced Boo-shay) Institute of Naturopathic Medicine http://binm.org/ is Western Canada’s only naturopathic medical school accredited by the Council on Naturopathic Medical Education. The Boucher Institute offers students a rigorous four-year program, which culminates in a Doctor of Naturopathic Medicine (ND) designation. Boucher graduates are leaders in naturopathic medicine, and have a strong commitment to self-reflection, a belief in the value of complementary medicine and a commitment to leading our world toward sustainable health. The Boucher Institute is also home to the Boucher Naturopathic Medical Clinic. Providing first-rate natural health care for the whole family, the clinic equips our clinic interns with essential hands-on experience in the art and science of practicing naturopathic medicine. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 16
    17. 17. Part V - Advanced consumer reference questions - Biomedical research Research questions are common in health and medical libraries. The word biomedicine includes research conducted in medicine, veterinary medicine and the life and 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 and starts with clinical trials. One of the pivotal movements in biomedicine in the last two decades is evidence-based medicine. What is evidence based medicine? Simply put, the evidence-based medicine movement “…is about 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 and advocacy have 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. 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  Hakia – http://hakia.com  Healthline – http://healthline.com  iMedisearch - http://www.imedisearch.com An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 17
    18. 18. Part VI - Current traditional news media  Social networking sites such as Patientslikeme http://www.patientslikeme.com/ Curetogether http://www.curetogether.com/ and Daily Strength http://www.dailystrength.org/ provide consumers with a platform to share their experiences of illness, disease, treatments and well-being  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 such as Carepages http://www.carepages.com allows health consumers to create websites, and share the love of blogging within a community While the quality of some information generated by sites such as Wikipedia and other health wikis should be evaluated, evidence suggests that user-generated content is getting better and more accurate over time. Recent studies show that some consumers trust each other more than their own doctors; one survey found that 40% of patients said they resort to medical information on the internet because their doctors do not take 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 my entry in the wiki entitled Top Social Media Websites in Medicine or sites listed here: http://medical20index.com/ . http://wikidoc.org/index.php/WikiPatient (WIkipatient seems to be on hiatus, 2014) An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 18
    19. 19. Appendix I - 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 An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 19
    20. 20.  Uniqueness and completeness of information  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 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., Brandon & Hill lists (although this is now retired), 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 An introduction to consumer health reference services – Selection aids and tools a manual for LIBR534 Health information sources & services , 2014 20 dollars CDN  Canadian distributors and newsletters, e.g., Login Brothers Canada http://login.ca
    21. 21. Appendix II Reference sources assignment Health & medicine reference questions 1) What is the Ebola virus? Do I need to be concerned about it for my family? 2) What is the Abbott method? I’m a rehab consultant but don’t have a clue about this physician “method” which I’m told dates back to the 19th century. 3) Can you find information on Haloperidol? Is it approved for use in Canada? 4) How many daily fruit servings should a 25 yo female have? Is there a Canadian standard? 5) I’m looking for a physician in Ottawa named Dr. Claire Kendall. Can you tell me about her, where she went to school and her medical specialty? 6) I need a definition for galeropia. Can you recommend a good print dictionary for a teenager studying health at school? 7) I need a definition for and origin of Williams syndrome for a university project. 8) My grandfather recently had an acute gout attack. Can you help me to find good reliable information about his health condition in his mother tongue (Punjabi)? 9) Is the HPV vaccine safe? I am worried about side-effects for my teenage daughter. I am a physiotherapist by training. Also, should my son be vaccinated? 10) Can you find information for my 15 year old son about ‘heart murmur’? He’s developmentally-delayed but reads at a grade V level. 11) My 75 y/o mom needs an overview of ‘shingles’ including pictures. 12) In Canada, is bottled water safer than water from a tap? I’d like to read some studies. 13) What are some of the side effects of taking anabolic steroids? I need material at a college level. I need information on testing for traces of the drug in the blood. 14) My mother is having a hip replacement. Do you have any videos about this? 15) What is non-melanoma skin cancer? I need free photos for a university project. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 21
    22. 22. 16) Do cell phones OR wifi cause cancer? What kinds of scientific studies are available? 17) What does it mean to have high blood pressure? Do I have it? Please help me figure this out. I’m from Germany and have just started to learn English. 18) What is considered a healthy diet for a teenage athlete? I’m 15, and this is for school. 19) What are the real health benefits of hot yoga? I hear it can lower heart-rate. I’m a 29 year old female with a good education. 20) How often am I supposed to check my cholesterol? I’m worried about it. I turn 50 this year and should go to see a doctor. Are there any home-tests available? 21) I am trying to lose weight. How much can I safely lose per week? Should I see a dietician? Complementary and alternative (CAM) health 22) My mother prays to stay healthy. Is there any proof prayer is beneficial for patients? 23) Does gingko really prevent dementia? I’d like a few clinical studies if possible. 24) Do you have any books or videos on hot yoga? What is hot yoga and how does it compare to Bikram yoga? Does hot yoga provide any real health benefits? 25) I have insomnia. Can I use chamomile to fall asleep instead of my prescription? 26) The doctor says I have early signs of osteoporosis. Should I take a dietary supplement? 27) Will hydrotherapy help to heal my Achilles tendonitis? 28) My 8 year old daughter has recently been diagnosed with “Aspergers syndrome”. Can I provide a special diet for her? 29) What is coronary heart disease; can it be prevented? Is heart disease inherited? 30) I am feeling very stressed these days. Does Reiki help with stress? 31) In Vancouver, several Asian communities eat lychee as part of their enjoyment of food. In pregnant or breastfeeding women, I hear lychee fruit can cause inflammation in the mouth for babies and mothers. Is this true? What does the evidence say? An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 22
    23. 23. Biomedical questions 32) What is body mass index? Does a high BMI cause disease? 33) What is the name of the legislation that led to the creation of the National Library of Medicine in the United States? Does Canada have a similar law? 34) I understand TB (tuberculosis) is a problem in Aboriginal and First Nations communities. What are some of the other major health problems experienced on reserves in Canada? 35) Is there any real medical evidence that acupuncture is beneficial in treating pain? 36) Can you help me find some research about “Munchausen’s syndrome by proxy”? 37) How do I find some research on LASIK surgery? What is it exactly? Is it safe? I don’t mind testimonials but a range of ‘evidence’ would be nice. 38) My friend has Stage IV colon cancer. Can she enroll in a clinical trial if she lives in Hope? 39) My sister in Richmond has diabetes II. Are there online support groups she can join? 40) How much of a problem are nut allergies in elementary school children in BC? 41) What are the long-term effects of anti-depressants and/or anti-anxiety drugs? 42) What types of diseases are carriers of BRCA1 susceptible to? 43) Are there any authoritative Canadian research studies about Internet addiction? 44) What does Health Canada do versus the Public Health Agency of Canada? 45) Who approves new drugs in the United States? What is the approval process? 46) Why can’t I get a subscription for clofazimine in Canada? An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 23
    24. 24. Appendix III – Website evaluation What to look for in an informative health website  Authority, transparency  Consider the source— who is responsible for website? its content?  Focus on information quality—is the information reviewed? how often?  Be a skeptic! 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 Website evaluation & rating tools  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.  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  NNLM’s Evaluating health websites http://nnlm.gov/outreach/consumer/evalsite.html  Patient 101: How to Find Reliable Information http://www.jointcommission.org/Patient_101_How_to_Find_Reliable_Health_Informati on/ An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 24
    25. 25. Appendix IV – Websites consulted I. General health information An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 25 Dictionaries  Dorland's Illustrated Medical Dictionary – check for print copies at UBC library  MedlinePlus - http://www.nlm.nih.gov/medlineplus/mplusdictionary.html o NLM Medical Words Tutorial http://www.nlm.nih.gov/medlineplus/medicalwords.html  Oxford Companion to Medicine - http://www.oxfordreference.com/views/BROWSE.html?subject=s14&book=t185  Stedman's Dictionary – check for print copies at UBC library Directories  [B.C.] Medical directory (Find a physician) - https://www.cpsbc.ca/  Canadian medical directory (print only)  Red Book Online - http://redbookonline.bc211.ca/bc/goHome?langInd=E 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 ed (free) - 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  DailyMed http://dailymed.nlm.nih.gov & Drug PORTAL - http://druginfo.nlm.nih.gov  E-CPS - Compendium of pharmaceuticals (Canada)  E-Therapeutics (UBC Library or VPL) http://resources.library.ubc.ca/1147  MedplinePlus - Drugs, supplements & herbal http://www.nlm.nih.gov/medlineplus/druginformation.html
    26. 26. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 26 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  eHealth 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/  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/library/publications/cdm.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  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/
    27. 27. Appendix V – What is the Electronic Health Library of BC? 1. A to Z http://ehlbc.ca/resources-databases/licensed-resources Core resources: CINAHL with Fulltext e-CPS / e-Therapeutics+ Health Source & Alt HealthWatch MEDLINE with Full Text PsycINFO Other eHLBC resources: http://ehlbc.ca/resources-databases/licensed-resources ELN licensed resources: http://www.eln.bc.ca/dbs/select.php Tutorials: http://support.ebsco.com/training/tutorials.php In January 2006, the Electronic Health Library of BC (e-HLbc) was formed to purchase province-wide access to online health resources (databases, indexes, abstracts and full -text journals). Establishment of the consortium was made possible by:  Individual and collective contributions of librarians and administrators from academic and health care sectors;  Significant financial contribution from the BC Ministry of Health Services; and  Support provided through the established elibrary consortium in the post-secondary education system (BC ELN). Who is involved in this initiative? Membership in the consortium is composed of the 6 BC health authorities, 24 publicly-funded post-secondary institutions, 3 provincial ministries, and the College of Physicians and Surgeons of BC. The strategic directions of e-HLbc are set by a steering committee of librarians and educators from these members. An introduction to consumer health reference services – a manual for LIBR534 Health information sources & services , 2014 27

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