COLUMN / CHRONIQUE

# Consumer health information

Compiled by Susan Murray

## CHIS Blog

Please visit the Consumer Health Information Service (CHIS) Blog (http://torontopubliclibrary.typepad.com/chis/) that was launched in September! The intent of the blog is to provide some context on health topics in the news that may be confusing and (or) controversial and provide links to authoritative resources. On occasion, we may promote an upcoming event and link to a substantive resource, such as our September Asthma Fair and Asthma wiki (http://asthma.wikidot.com/start).

A few items covered in September were listeriosis and bisephenol A. If you have ideas for blog posts, please go to the blog and click on the "contact CHIS" button.

## Top 10 health-related Web sites in 1999: Where are they now? What do librarians recommend?

Consumers and librarians differ in their choices of good starting points for reliable health information. Consumers tend to access popular multi-topic health sites that include news and chatting with experts, while librarians turn to non-profit, often government-supported, sites, including subject-specific sites.

Consumer health sites tend to be volatile. In a 26 August 2008 post entitled "Surviving the Shakeout in

Consumer Health Sites," Health Content Advisors (http://www.healthcontentadvisors.com) predicted that "some companies in the most crowded, undifferentiated and geographically dispersed segments (e.g., sites for rating practitioners, general health and wellness sites, and social media sites where patients share experiences) will fail and some will consolidate." They mention that Revolution Health is on the block. For a brief description of the site, see "Consumer health information services 2.0", *Journal of Consumer Health on the Internet*, 2008;12(3):187-99.

What were the popular sites from 9 years ago and which ones have survived? A 15 October 1999 posting on MEDLIIB-L reported that the American Medical Association identified the sites listed in Table 1 as the top 10 health sites. They are listed by their rank among all Web sites and the number of unique visitors for the month. Of the 10 sites, four are no longer available and six are still "live".

Compare the list in Table 1 with the Medical Library Association (MLA) list; the only overlap is the Mayo Clinic site. The Consumer and Patient Health Information Section (CAPHIS) of MLA has top 10 and top 100 lists. Sites are evaluated on the following criteria: credibility, sponsorship/authorship, content, audience, currency, disclosure, purpose, links, design, interactivity, and disclaimers. The MLA finds the following Web sites particularly useful (sites are listed in alphabetical, not ranked, order):

<table><caption>**Table 1.** Top 10 health Web sites in 1999.</caption><thead><tr><th>Rank among health Web sites only</th><th>URL</th><th>Rank among all Web sites</th><th>No. of unique visitors</th><th>Status update</th></tr></thead><tbody><tr><td>1</td><td>www.drkoop.com</td><td>76</td><td>3 474 000</td><td>Unchanged</td></tr><tr><td>2</td><td>www.aolhealth.aol</td><td>229</td><td>1 508 000</td><td>URL changed to aolhealth.com</td></tr><tr><td>3</td><td>http://www.onhealth.com</td><td>246</td><td>1 432 000</td><td>No longer available; links directly to www.medicinenet.com (site owned and operated by WebMD)</td></tr><tr><td>4</td><td>www.webmd.com</td><td>324</td><td>1 207 000</td><td>Unchanged</td></tr><tr><td>5</td><td>www.discoveryhealth.com</td><td>405</td><td>1 036 000</td><td>Unchanged</td></tr><tr><td>6</td><td>http://www.betterhealth.com</td><td>533</td><td>819 000</td><td>No longer available; links directly to hospital Web site</td></tr><tr><td>7</td><td>http://www.thriveonline.com</td><td>539</td><td>813 000</td><td>No longer available</td></tr><tr><td>8</td><td>http://www.mayohealth.org</td><td>583</td><td>766 000</td><td>URL changed to mayoclinic.com</td></tr><tr><td>9</td><td>http://www.healthyideas.com</td><td>637</td><td>709 000</td><td>No longer available; links directly to Prevention.com</td></tr><tr><td>10</td><td>http://www.intelihealth.com</td><td>898</td><td>514 000</td><td>Unchanged</td></tr></tbody></table>
(1) www.cancer.gov

(2) www.cdc.gov

(3) www.familydoctor.org

(4) www.healthfinder.gov

(5) http://hivinsite.ucsf.edu

(6) www.kidshealth.org

(7) www.mayohealth.org (URL changed to mayoclinic.com)

(8) www.medem.com/

(9) http://medlineplus.gov

(10) www.noah-health.org

The Consumer Health Interest Providers Group (CHIPIG) conducted a survey of Canadian health science librarians in 2006 to develop a Canadian top 10 list. Of the 10 listed, three marked with asterisks are no longer in operation, so it's time to conduct a new survey!

(1) www.canadian-health-network.ca*

(2) http://www.womenshealthmatters.ca

(3) http://www.dietitians.ca

(4) http://chp-pcs.gc.ca/CHP/index_e.jsp
(Canada Health Portal)*

(5) http://hsl.mcmaster.ca/tomflem/top.html
(Health Care Information Resources)*

(6) www.sexualityandu.ca

(7) http://www.aboutkidshealth.ca/

(8) http://www.passeportsante.net/

(9) http://www.ontario.cmha.ca/

(10) www.bchealthguide.org

# Notable new publications and Web sites

## Medpedia Project

http://www.medpedia.com/index.php/Main_Page

Coming by the end of 2008 is the Medpedia Project, a global project to serve both the medical community and consumers. "In association with Harvard Medical School, Stanford School of Medicine, Berkeley School of Public Health, University of Michigan Medical School and other leading global health organizations, the Medpedia community seeks to create the most comprehensive and collaborative medical resource in the world." Organizations can apply online to have their content listed; the Medpedia Project is looking for content that is copyright-free or in the public domain and freely editable.

## NIHSeniorHealth

http://nihseniorhealth.gov/

NIHSeniorHealth, from the US National Institutes of Health, featuring health and wellness information for older adults, launched its redesigned Web site in June 2008. The new design allows users to find their topic more quickly, by an alphabetical index or by category. Watch one of the 95 health videos or learn about other senior-friendly resources. Each month a new or updated topic is highlighted in the Featured Topic section.

# New York Times Health Blog

http://well.blogs.nytimes.com/

The New York Times Health Blog is moderated by columnist Tara Parker-Pope, who sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well. This active blog, celebrating its first anniversary in September, has had 470 posts and almost 60 000 comments. The 24 September 2008 post was a humourous look at the milestones, such as most blogged vegetable and toughest comment to the moderator. Parker-Pope also comments on or alerts readers to the range of health information in *The New York Times*, particularly in the health and science columns. In addition, *The New York Times* has an extensive health guide with more than 3000 topics available at http://health.nytimes.com/health/guides/index.html.

Mayer S, Hogan Smith K, Rios G. Consumer health information services 2.0. *Journal of Consumer Health on the Internet*. 2008;12(3):187-99.

The authors discuss the intersection of health information services and Web 2.0, particularly its impact on MedlinePlus and implications for the work of health sciences librarians. Three examples of consumer health information 2.0 sites (HealthVault, Revolution Health, and IndivoHealth) are briefly discussed.

Scola-Streckenbach S. Experience-based information: the role of web-based patient networks in consumer health information services. *Journal of Consumer Health on the Internet*. 2008;12(3):216-36.

Ever since I read Tom Ferguson's 1996 watershed publication *Health online: how to go online to find health information, support forums, and self-help communities in cyberspace*, I have been interested in the concept of the patient as expert—in this context, connecting, teaching, and supporting each other online. This article (with an extensive bibliography) urges health information professionals to participate in and assist patient networks to provide more proactive and improved health information services.

# Patient engagement and health care

http://www.pickereurope.org/Filestore/Publications/WhereAre_thePatients_-_WHO_brief.pdf

"Where are the patients in decision-making about their own care?" is the title of a policy brief written for the World Health Organization's European Ministerial Conference on Health Systems, held in Estonia in June 2008. The key messages were that

(i) consumers have to make important health decisions that affect health outcomes, so strategies to support patient education and engagement should be a fundamental plank of health policy

(ii) patients can play an important role in understanding the causes of illness, protecting their health and taking appropriate action, choosing appropriate treatments for acute episodes of ill health, and managing chronic illness

(iii) these roles must be recognized and supported
## Consumers seeking health care information

http://www.resourceshelf.com/2008/08/21/striking-jump-in-consumers-seeking-health-care-information/

According to a national study by the US Center for Studying Health System Change, there has been a marked increase in the numbers of consumers who are seeking health information. In 2007, 56% of American adults sought information about a personal health concern, up from 38% in 2001. Use of all information sources rose substantially, with the Internet leading the way: Internet information seeking doubled to 32% during the 6-year period. Education level remained the key variable in how likely people are to seek health information. Consumers who actively researched health concerns reported positive impacts: more than half said the information changed their overall approach to maintaining their health, and four in five said that the information helped them to better understand how to treat an illness or condition.

## Health literacy

The San Diego Public Library and READ San Diego have easy-to-use interactive modules for health literacy, family, and

workplace literacy. The “You and Your Health” health literacy modules first provide practical information, such as how to adjust the volume, play the videos, use a mouse, print, and move back and forth. Tutorials on health insurance, mammograms, and talking with your doctor on health literacy are available at http://literacyworks.org/sdwebquest/1_health_intro.html.

In September, the US Department of Health and Human Services launched a new version of healthfinder.gov (http://www.healthfinder.gov) that is easy to understand and navigate, especially for consumers with limited health literacy. Several possible versions of the Web site and the new prevention content were consumer tested to ensure that the site is user friendly and that people can find what they are looking for. The Quick Guide to Healthy Living uses everyday language and examples. The new myhealthfinder tool provides personalized recommendations for clinical preventive services specific to the user’s age, gender, and pregnancy status (http://www.itnewsonline.com/showprnstory.php?storyid=13017).