Consumer health information

The power of collaboration. Monday, May 24, 3:30– 5:00 p.m. Providing excellent service to consumers often requires collaboration with other libraries, agencies, community groups, and departments, which can help utilize limited resources more effectively. This session will cover innovative collaborative projects serving diverse populations, such as mental health consumers and Native American college students; public/academic and public/private partnerships; and successful funding strategies.

An online survey to explore attitudes about health literacy was conducted with members of the Medical Library Association (MLA) and a group of environmental health consultants to the National Library of Medicine (NLM). The responses were grouped into three factors. Factor 1 is optimistic and supportive of health literacy's transformative sociocultural and professional potential, if clinical settings become a launching point for health literacy activities. Factor 2 is less optimistic about health literacy's potential to improve clinical or patient outcomes and prefers to focus health literacy initiatives on classroom education settings. Factor 3 supports improving the nation's health literacy but is more inclined to support health literacy initiatives when people privately interact with materials. The three factors disagree about the appropriate venue to launch successful health literacy efforts. The findings suggest that there is a marked difference in opinion on how health literacy initiatives should be implemented.
At the MLA 2007 Conference, a special session entitled Health Information Literacy: rEvolution in Roles explored the important issues of roles and partnerships for health sciences librarians and public librarians in dealing with health information literacy. After a presentation by Janet Ohene-Frempong, a noted speaker and health literacy advocate, a panel of librarians discussed how they addressed health information literacy in their research or organizations.

MLA 2007 Conference, 18-25 May, Philadelphia
The theme of the 2007 MLA Conference was Information Revolution: Change is in the Air. One consumer health presentation addressed this theme in a particularly powerful sense -Patient as Expert: Revolutionary Changes in Medical Decision Making. With the exception of one panel member, all of the presenters were consumer health librarians and breast cancer survivors. They shared how their experience in navigating the health care system (some were very negative experiences) had heightened their awareness of the importance of having the right information to be an equal partner in the medical decision-making process. This also helped them to better understand and assist consumers making health care decisions.
The conference presentations included providing information services to underserved groups, and providing complementary and alternative medicine (CAM) information.

Consumer Health Information Service Award
The Consumer and Patient Health Information Section (CAPHIS) of the MLA recently established an award to formally recognize and promote the accomplishments of consumer health librarians to encourage leadership and to recognize outstanding quality of service to consumers and a strong commitment to serving the public. The awards committee (I was a member) was thrilled with the quality of the nominations received for the inaugural award and found it a difficult decision to select only one candidate.
Andrea Kenyon, librarian at the College of Physicians of Philadelphia, received the first Consumer Health Information Service Award at the CAPHIS meeting at the MLA 2007 Conference. Among her many accomplishments, Andrea has been the CAPHIS chair and membership chair, and she created and managed the CAPHIS listserv. She has written about consumer health issues, including being a coauthor of The Public Librarian's Guide to Providing Consumer Health Information (Public Library Association, 2002).
According to her nominator, Andrea worked tirelessly with colleagues during the 1990s to position CAPHIS as the consumer health information authority for MLA and information professionals at large. She emphasized that this task was particularly challenging since there was little focus on the delivery of health information to consumers, and in fact, many questioned the role for medical librarians in this capacity. In the concluding paragraph, she stressed the many contributions of Ms. Kenyon by relaying that "throughout her career, Andrea has not only been hands-on, but has directed and inspired others to see the value of empowering consumers by providing them with access to credible, understandable health information."

US Food and Drug Administration (FDA) initiatives www.fda.gov/consumer
The Consumer Health Information for You and Your Family Web page provides comprehensive and timely consumer information.

www.fda.gov/consumer/consumerenews.html
FDA Consumer Health Information, a free monthly enewsletter, will alert consumers to content contained on the page.
Evidence database for social care of the aged http://socialworkleadership.org/nsw/cap/ebp.php The Evidence Database, a project of the New York Academy of Medicine, featured at a poster at MLA 2007, was created to help scholars, policy analysts, and advocates stay on top of the latest research and innovations in aging care, including health care, social services, and workforce issues. It is regularly updated by an advisory panel that filters, reviews, and catalogues articles published in professional journals both in the US and abroad.

Dietary supplements labels database http://dietarysupplements.nlm.nih.gov/dietary/
This new NLM database for consumers provides information about ingredients in more than a thousand selected brands of dietary supplements, allowing users to compare ingredients in different brands. Information is also provided on medical benefits claimed by manufacturers, but these claims have not been evaluated by the FDA to diagnose, treat, cure, or prevent any disease. The database can be searched by brand names, uses noted on product labels, specific active ingredients, and manufacturers. Active ingredients of dietary supplements in the database are linked to other NLM databases, such as MedlinePlus and PubMed, to allow users to understand the characteristics of ingredients and view the results of research pertaining to them.

Genetic Alliance http://www.geneticalliance.org/
Genetic Alliance is a coalition of more than 600 advocacy organizations serving 25 million people affected by 1000 conditions. You can search by the name of a condition or organization and find information. For example, a search on Angelman syndrome leads to a support group and a link to NLM resources on the topic. It is important that a consumer health information (CHI) collection has up-to-date material that reflects the latest medical evidence. It is generally accepted in the CHI literature that the majority of material in a CHI collection should be published within the last 5 years, with several exceptions. Some areas date more quickly, such as information on cancer treatments and acquired immune deficiency syndrome (AIDS). Complementary and alternative medicine (CAM) material does not date as quickly, and there are classic CAM works. This study examined the median age measurement methodology as a general measure for evaluating the currency of CHI collections in a public library system…. The median age of CHI items in the individual libraries ranged from 5 years to 12 years. This technique may be useful to identify items for weeding (or, in some cases, replacement), particularly in a large collection of more than 900 items. Given that the median age of CHI items in some public libraries was as much as 12 years, the methodology of this study should be heeded and acted upon. This study explored the potential of a community-based health information outreach project to overcome problems associated with health literacy in low-income Hispanic communities along the Texas-Mexico border. "Using a train-thetrainer approach, community outreach workers known as promotoras were trained by a health information outreach team to search English and Spanish versions of MedlinePlus." This project illustrates how "health science librarians can contribute toward the development of community health workers' core competencies by training them in the use of online consumer health databases." Zeng QT, Tse T, Divita G, Keselman A, Crowell J, Browne AC, Goryachev S, Ngo L. Term identification methods for consumer health vocabulary development. J Med Internet Res. 2007 Feb 28;9(1):e4. This is one in a series of articles about research on a consumer health vocabulary (CHV) (i.e., to identify terms that capture what consumers mean when they speak about health issues). "Because of the heterogeneity and ambiguity of consumer expressions, term identification for CHV is more challenging than for professional health vocabularies."

Consumer health readings
Arnott-Smith C. The ten thousand questions project: towards a better understanding of consumer health vocabulary. Journal of Consumer Health on the Internet. 11(1):33-47. This study, funded by MLA's Donald Lindberg Research Fellowship, explores the "consumer health vocabulary problem", or the mismatch between the terms used by consumers and those used by health care professionals. This large study examined 10 000 consumer health information postings and categorized the terms that they used.