1. MEDLINEplus and Consumer Health Initiatives at NLM/NIH October 20, 2000 Annual Meeting, Mid-Atlantic Chapter of the Medical Library Association Adam Glazer, Reference Librarian National Library of Medicine

2. Overview MEDLINEplus NLM Gateway ClinicalTrials.gov AgePage Electronic Health Information Projects HEALTHINFOQUEST Consumer Health: An Online Manual The Public Library and Consumer Health: Meeting Community Needs Through Resource Identification and Collaboration

3. MEDLINEplus History and development Components and technology Content arrangement, selection guidelines Evaluation and feedback Future plans

4. What is MEDLINEplus? http://medlineplus.gov Service to organize health information on the Internet From the National Library of Medicine/ National Institutes of Health

5. Why MEDLINEplus? General public searching MEDLINE NLM’s main Web site –90% of searches for medical terms –Diseases, drugs, conditions Customer service questions –Health reference

7. October 22, 1998 Public Library pilot project 22 health topics Where did the topics come from? –MeSH –Planetree –Consumer health Web sites –User searches 116,000 hits first month

8. October 22, 1998 - September 21, 1999

9. September 22, 1999 - August 23, 2000

10. August 24, 2000 - present

11. MEDLINEplus Today Comprehensive health resource –414 topics (diseases, wellness issues) –Links to organizations, libraries, directories –Drug information –Encyclopedia Over 2.5 million page hits/month

12. Statistics

13. Major Components Health Topic pages –Links - full text on NIH and other sites –Prepackaged MEDLINE searches –ClinicalTrials.gov links Drug information via USP DI ® Medical encyclopedia via adam.com

14. Technology Database of records (Oracle) –Includes information on sites and contacts –Over 13,000 records Web-based input system (Cold Fusion) –Remote access Authorities and rules Review and approval process HTML generated nightly for Web

16. Quality Checks Broken links fixed nightly Individual records reviewed before approved Pages reviewed before release to public Pages reviewed after release

17. MEDLINEplus Strengths User-driven topics User-driven design NIH collaborations Authoritative information Private Semi-annual topic evaluation Nightly link checking Selective, not comprehensive resource

18. User-Driven Topics Customer driven –NLM Web page usage and search log evaluation NLM Web medical topic searches >90% –Pilot project with public libraries Builds on NLM strengths –Selecting and organizing information –MEDLINE Created looking at several vocabularies –NLM’s Medical Subject Headings (MeSH) –Planetree Classification –Other consumer health Web sites –What users are searching

19. Content Arrangement Multiple access points (A-Z, categories) Related categories; related topics Topic pages have table of contents arrangement; point to full text information Prepackaged MEDLINE searches using PubMed Links to ClinicalTrials.gov

20. Selection Issues Abundant health information on the Web –Not always authoritative –Often with agenda Nature of Web sites: constant change

21. Selection Guidelines Linked from “About MEDLINEplus” Emphasis on resources from government health organizations, especially NIH Institutes Collaborate with NIH Institutes on content development and review

22. Selection Guidelines (2) Must be authoritative, accurate and well maintained Educational, not selling product NLM contacts organizations about –displaying advisory boards –technical issues (frames)

24. NIH Collaboration Focus on NIH information Information Officers and staff –Organizations –Sites –Topics and arrangement Institute staff reviewing topic page

25. 30 Most Requested September 2000 (1-15) Diabetes Shingles Fibromyalgia AIDS Skin Diseases Breast Cancer Foot/ankle Injuries Thyroid Diseases Multiple Sclerosis Parkinson’s Disease Back Pain Knee Injuries & Disorders Gallbladder & Bile Duct Diseases Sexually Transmitted Diseases Sleep Disorders

26. 30 Most Requested September 2000 (16-30) Arthritis Depression Heart Diseases Anemia About Your Medications Spinal Stenosis Mouth & Throat Disorders Cancer (general) High Blood Pressure Insect Bites & Stings Sinusitis Bipolar Disorder Stroke Nutrition Lymphoma

27. MEDLINE Searches “Canned” searches created by NLM Reference Staff Tailored for the consumer –Current, English, clinical –20-70 references –Cover selected aspects of topic Search PubMed each time

28. Canned PubMed Search

29. Consumer Health Titles Subset consumerj[sb] Alternative Medicine Review Breastfeeding Review FDA Consumer Harvard Health Letter Harvard Heart Letter Harvard Men's Health Watch Harvard Mental Health Letter Harvard Women's Health Watch Health News Johns Hopkins Medical Letter, Health After 50 Medscape Women's Health Mayo Clinic Health Letter

30. ClinicalTrials.gov Links Introduced - February 2000 Mutual links through MeSH MEDLINEplusMeSHClinicalTrials.gov

31. Online Tour Released September 13 th

32. Frequently Asked Questions Released September 13 th

33. Feedback and Evaluation Customer Service (phone, E-mail) Comment link on every page

34. Comments - Jan - Sep 2000 N=1195

35. Recent Comments “I am very impressed with your website. The layout is very clear and easy to navigate... Now that I have visited, I will surely return. Many thanks to you and your staff for the creation of a truly worthwhile site.” (9/21/00)

36. Recent Comments “Your information has been very helpful to my wife and I and we want you to know we greatly appreciate it. Thank You!!!” (9/18/00)

37. Recent Comments “I wanted to tell you what a wonderful web site you have created and continue to develop. You have helped me, my students and our patients/families more than you might know… I wish there was a way to better thank you.” (9/3/00)

38. Experience to Date Over 13,000 records in system Over 1000 organizations –over 400 for display Over 100 organizations contacted Sites change Hard to keep up

39. Future Health news Patient education modules AgePage (National Institute on Aging) Additional drug information Share links with local / regional Web sites Terminology server to improve searching Spanish language Consumer health libraries from DOCUSER Cooperation: sharing health resources

40. Coming Soon - Health News

41. Full News Story

42. Topic with News

43. Summarizing MEDLINEplus... MEDLINEplus is: Selective Highly reviewed Private Responsive Growing

44. NLM Gateway http://gateway.nlm.nih.gov/ Launched October 16 th A single Web interface that searches multiple NLM retrieval systems Includes limits for consumer health (MEDLINEplus)

47. ClinicalTrials.gov http://clinicaltrials.gov/ Provides patients, family members, health care professionals, and members of the public easy access to information on clinical trials for a wide range of diseases and conditions Collaborative effort between NLM, other NIH institutes and the Food and Drug Administration (FDA)

49. AgePage Cooperative effort between the National Library of Medicine and the National Institute on Aging Reflects NLM’s efforts of reaching out to special populations

52. Electronic Health Information Projects Announced in January 2000 Projects will run from 12 to 18 months More than $1 million invested Projects target people who lack access to computers and computer skills Originally involved 49 projects; four more were recently added

53. http://www.nlm.nih.gov/news/press_releases/ehip.html

54. http://www.nlm.nih.gov/nno/hipprojects.html

55. http://www.nlm.nih.gov/news/hipprojects2.html

56. JAMA 2000 Apr 5;283(13):1675-6.

57. HEALTHINFOQUEST http://www.nnlm.nlm.nih.gov/healthinfoquest/ Series of pathfinders primarily for public librarians and health educators Joint effort of –King County Library System (Bellvue, WA) –NN/LM Pacific Northwest Region (University of Washington Health Sciences Library and Information Center)

58. Consumer Health: An Online Manual http://www.nnlm.nlm.nih.gov/scr/conhlth/manualidx.htm Includes information about –Planning a consumer health library –Evaluating consumer health Web sites –Consumer health materials in Spanish Coordinated by the NN/LM South Central Region (Houston Academy of Medicine--Texas Medical Center Library)

59. The Public Library and Consumer Health: Meeting Community Needs Through Resource Identification and Collaboration http://www.pla.org/consumerhealth.html January 10-11, 2001 at the Hyatt Regency, Washington, DC Presented by the Public Library Association (PLA), NLM and MLA Provides library staff with an introduction to health information resources, collection development and searching health and medical information databases Examples of collaborative projects that public libraries can model will be presented Special tours of NLM will be offered Get the word out to your local public libraries!

60. For more information...