# Consumer health information

Compiled by Susan Murray

## Consumer Health Information Service (CHIS) wiki

Please visit the recently launched CHIS wiki at www.chis.wikidot.com to check out resources such as the following:

(i) Building a consumer health collection – Updated collection development guides (the “long” list and short, annotated core list); updated list of consumer health articles and books

(ii) Health navigators – Resource guides of recommended articles, books, periodicals, and organizations on a variety of health topics

(iii) Locating reliable health info – Evaluation guidelines/checklist; selected Canadian, US, and international multi-topic health-related Web sites

(iv) Toll free health numbers – Focuses on Canadian sources but includes many US and international sources

(v) Information about material in the CHIS collection – Information file subjects, journals and magazines

A few sections are still “under construction,” such as most of the Frequently Asked Health Questions, but are coming soon. Live links appear in red.

The wiki partially replaces information on the CHIS Web site (http://www.tpl.toronto.on.ca/uni_chi_index.jsp). For example, the collection guides on the new wiki are updated, while those on the CHIS Web site are not.

Tell us what you like, what you think can be improved, and what you'd like to see included on the wiki. And if anyone has lessons learned in developing your own wikis that you can share (such as gathering statistics, getting input from users), please contact me at smurray@torontopubliclibrary.ca.

## Notable new publications and Web sites

Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P, Schlüter J, Ford D. *Partnering with patients and families to design a patient and family-centered health care system. Recommendations and promising practices.* Bethesda, Md.: Institute for Family-Centered Care, 2008 Apr.

This report highlights examples of best practices from hospitals, ambulatory programs, medical and nursing schools, health care funders, patient- and family-led organizations, and other health care organizations. The publication is available at http://www.familycenteredcare.org/pdf/PartneringwithPatientsandFamilies.pdf.

Wilhelm, MR. Pfannenstiel B, editor. The Library Consult: delivering consumer health information using the electronic medical record system. *MLA News*. 2008 Mar;11.

The Library Consult system enables point-of-care referrals from clinic providers to library staff for patients who are seeking a better understanding of their health condition or diagnosis.

## Agency for Healthcare Research and Quality

http://www.ahrq.gov/path/beactive.htm

The Agency for Healthcare Research and Quality (US) has an extensive section titled “Be an Active Health Care Consumer.” It includes tips on navigating the system (not all are US focused), finding information and support after a diagnosis, preventive steps to maintain good help, what you need to know when having surgery, recognizing health care quality, checking your medications, and how to be an active health care consumer.

## Friends of Alternative and Complementary Therapies (FACT)

www.thefacts.org

The Friends of Alternative and Complementary Therapies (FACT), “a community of discerning consumers and qualified professionals with a vision: the creation of a repository of health information that is factual, accessible, credible and ethical,” launched their new Web site in June. While creating this knowledge base of quality complementary and alternative medicine (CAM) will take some time to develop, there are some useful items on the site:

(i) Related links with annotated descriptions to CAM resources

(ii) News and events to FACT and other CAM events

(iii) A blog to engage those interested in CAM: the first post is a discussion of the film screened by FACT, *How to save the world: one man, one cow, one planet*, and its theme of biodynamic farming.

## HealthInsite

http://www.healthinsite.gov.au/

This is not so much a new than a recently discovered site brought to my attention by CHIS librarian Donna MacLeod. HealthInsite, an Australian government initiative, provides up-to-date quality assessed information on a range of health topics. You can search by A-Z topics, health conditions,
health and well-being, life stages and events, as well as news and health services. On the sidebar are useful features such as Questions to Ask Your Health Professional, How to Assess Health Information Online, and Reviews of Evidence for Treatments.

## Health databases

Patient Education Reference Center (PERC) is a new EBSCO database that features a comprehensive collection of current, evidence-based patient education information for clinicians to print and distribute right at the point-of-care. There are 12 000 individual patient handouts written at a 3rd - 7th grade reading level, covering 4000 diseases and conditions, over 750 procedures and lab tests, more than 2800 lifestyle and wellness topics, over 1500 unique drugs (more than 8000 brand and generic names), and discharge and home care information for more than 300 related topics. For more information or to arrange a free trial, see http://www.ebscohost.com/thisTopic.php?marketID=2&topicID=1034.

Another EBSCO feature that I wasn't aware of is the promotional material that can be customized for your institution. For example, for medical libraries, go to http://support.ebsco.com/customer.php. The PERC database is so new that material is not yet available for this product.

## Foreign language resources

In May, MedlinePlus released a multilingual feature, providing access to high quality health information in more than 40 languages. The collection, containing over 2500 links to information covering nearly 250 health topics, can be searched by language or topic (see http://www.nlm.nih.gov/medlineplus/languages/languages.html).

## Health literacy

At the 2008 Medical Library Association (MLA) Conference, there was a presentation on "The Role of the Librarian in Health Literacy." One of the presenters was Sabrina Kurtz-Rossi who is the Project Coordinator of MLA's Health Information Literacy Research Project (http://www.mlanet.org/resources/healthlit/hil_project.html). She reported that in a survey of hospital administrators with libraries, 90% thought that consumer health information was critical to their hospital's success. However, many administrators feel that providing online health information is adequate, overlooking the very real problem of health literacy. Some excellent resources for health literacy are mentioned below.

The Ask Me 3 Campaign, established by the National Patient Safety Foundation, helps consumers improve their health literacy by doing three things: (i) asking their health

care providers three simple questions, (ii) bringing a family member to a doctor's appointment, and (iii) providing their physician with a list of their medications.

The three simple questions to better understand their medical situation are the following:

(1) What is my main problem?

(2) What do I need to do?

(3) Why is it important for me to do this?

There are sections on the site for health care providers, consumers, large-scale implementers, and the media (http://www.npsf.org/askme3/).

The Speak Up initiatives, established by the Joint Commission (US), is an award-winning patient safety program that emphasizes clear, direct language. A number of their brochures are available at http://www.jointcommission.org/PatientSafety/SpeakUp/.

A 20 May 2008 column by Dr. Carolyn Clancy, which is on the Agency for Healthcare Research and Quality (AHRQ) Web site, has links to additional resources such as an AHRQ podcast and building a question list (http://www.ahrq.gov/consumer/cc/cc052008.htm).

## Health care survey

A 2008 Survey of Health Care Consumers in the US, produced by the Deloitte Center for Health Solution, looked at five major areas: (i) traditional health services, (ii) alternative and non-conventional health services, (iii) self-directed care, (iv) information seeking, and (v) financing.

Six segments were observed: the content & compliant, the sick & savvy, the online & onboard, the shop & save, the out & about, and the casual & content (http://www.deloitte.com/dtt/article/0,1002,cid%253D192717,00.html).

## Health records

Does access to health records help consumers improve their health outcomes?

Kaiser Permanente, the biggest health maintenance organization in the US, has a pilot program to link patient records to Microsoft's consumer health platform. The test will initially be limited to Kaiser employees who volunteer to have their records transferred, but access could be widened to the HMO's 8.7 million members later this year. More than 2 million members have signed up to use Kaiser's own online health records service, My Health Manager, and the agreement with Microsoft will dramatically expand availability of online health information, services, and tools.

Google unveiled Google Health, a US health information service that combines the leading Web company's classic search services with a user's personal health records online. Kaiser and Microsoft, as well as Google, said their sites adhere to federal standards for data exchange and include advanced safeguards to protect members' personal information.