Consumer Health: A Collaborative Effort

CHRISTINA DALEYLancaster General Hospital, Lancaster, Pennsylvania, USA

MARY ANN HELTSHE-STEINHAUERLibrary System of Lancaster County, Lancaster, Pennsylvania, USA

The Health Information Access Project is a public library initiativein partnership with Lancaster County Hospitals=Health CareProviders and United Way of Lancaster County that is designedto provide reliable health information to Lancaster County,Pennsylvania, residents in a variety of forms. The project com-ponents include programming provided by Lancaster CountyHospitals; an online Web portal for public access; collectionenhancement of circulating books on consumer health=wellnessat public libraries and hospital health libraries; and printed infor-mation in the form of flyers, brochures, etc., that will be distributedthroughout the county at public libraries, hospitals, and otherdesignated locations. The Health Information Access Project isfunded by a Library Services and Technology Act Grant fromCommonwealth Libraries.

KEYWORDS Collaboration, collection development, consumerhealth information, Health Information Access Project, medicallibraries, National Network of Libraries of Medicine MiddleAtlantic Region, public libraries, Web portal development

INTRODUCTION

The consumer movement has gradually infiltrated into the health care field.The increasing cost of medical care and new medical technologies haveprompted consumers to become more active in the medical decision pro-cess.1 In addition, the medical community recognizes the need to provide

Received July 30, 2009; revised August 14, 2009; accepted August 26, 2009.Address correspondence to Christina Daley, Lancaster General Hospital, 555 North Duke

Street, Lancaster, PA 17604. E-mail: cd004@lancastergeneral.org

Journal of Consumer Health on the Internet, 13:347–358, 2009Copyright # Taylor & Francis Group, LLCISSN: 1539-8285 print=1539-8293 onlineDOI: 10.1080/15398280903340962

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consumer health information. The response has been an emergence ofconsumer health resources.

The health care system is complex, and much of the available medicalinformation can be difficult to understand. In 2004, the Institute of Medicinereport Health Literacy: A Prescription to End Confusion estimated that 90million Americans ‘‘have difficulty understanding and using health informa-tion.’’2 Health literacy awareness increased with the release of the HealthyPeople 2010 report, which identified health communication as a nationalinitiative.3 The initiative defined health literacy as ‘‘the degree to which indi-viduals have the capacity to obtain, process, and understand basic healthinformation and services needed to make appropriate health decisions.’’3

The Healthy People 2010 progress update indicated that despite the progressmade, one in three adults still do not have the ability to ‘‘interpret an over-the-counter (OTC) drug label, know when a child should receive a vaccine,or use a BMI.’’4

The Internet has become a primary resource for consumers to accesshealth information. According to the Pew Internet Online Health Searchreport (2006), 113 million Americans have used the Internet to search forhealth information.5

Although seeking health information is certainly a step in the rightdirection, several problems remain. Not all of the information found on theInternet is credible, current, and reliable. The Pew Internet Online HealthSearch report (2006) indicated that the majority of Internet users begin witha general search engine and do not consistently check the sources for cur-rency or reliability.5 In 2008, the Pew Internet=California Healthcare Founda-tion completed an additional survey on The Social Life of Health Information.The respondents indicated that the information found on the Internet didhave an impact on a health care decision.6 In addition to using the Internetto gather health care information, American adults also continue to use tradi-tional health resources, with 54% consulting books and other printresources.6

BACKGROUND

The Library System of Lancaster County, Pennsylvania (Library System), is afederated system of 14 public libraries, three branch libraries, and a bookmo-bile. The system serves 490,500 residents, which, according to the U.S. Cen-sus Data American Community Survey (2007) 91% are Caucasian, 7% areHispanic or Latino, and 2% are African-American.7 The age distribution ofpeople in Lancaster County indicates that 27% are under 18 years of age,8% are 18–24, 52% are 25–64, and 13% are 65 and older.7 Education levelsindicate that 79% of people 25 years and over have at least graduated fromhigh school, and 23% have a bachelor’s degree or higher.7 Among people

348 C. Daley and M. A. Heltshe-Steinhauer

16–19 years old, 14% are dropouts; they are not enrolled in school and havenot graduated from high school.7 More than 87% of Lancaster Countyresidents are English speaking, while 5% speak Spanish and nearly 7% speakother Indo-European languages.7

According to statistics taken from the Library System’s catalog=circulation system, Millennium, library usage during the past 10 years hascontinued to grow rapidly, with a 200% plus increase. Circulation statisticsincreased 90% to nearly three million items a year. Currently, approximately50% of the county’s residents are library cardholders. The Library System ofLancaster County has 864,804 library holdings.

Attendance at library programs has increased as well. In 2005, approxi-mately 70,000 people attended library programs at the public libraries. Elec-tronic resources continue to experience high usage with more than 98,000user sessions; 50% access remotely. The Library System also has a bookmo-bile that provides countywide service in the form of nearly 800 bookmobilestops per year at primarily low- and moderate-income areas of the countywith special focus on children and older adults. The bookmobile outreachefforts include providing services to traditionally underserved groups inLancaster County, such as African-Americans, Latinos, and the Amish.

The Library System’s growth indicates its strong presence in the commu-nity. The public relations=community relations manager of the LibrarySystem recognized the need for access to reliable health information in thecommunity. The public library system was in the position to provide thisvaluable service. To this end, the manager wrote a grant proposal to funda consumer health project for the county. Due to these efforts, the LibrarySystem was awarded a federal Library Services and Technology Act (LSTA)grant administered by the Office of Commonwealth Libraries.

The initiative had three goals:

1. Promote health and wellness in Lancaster County by providing access toreliable health resources to empower residents to make informed, healthydecisions.

2. Enhance public awareness of libraries as sources of credible information.3. Increase collaborative efforts between libraries and community health

organizations.

The Health Information Network Project evolved into a collaborativeeffort among the Library System, Lancaster General Health, Ephrata Commu-nity Hospital, Heart of Lancaster, Lancaster Regional Medical Center, and theUnited Way of Lancaster County. A MLS certified medical librarian with anadditional master’s degree in management of health administration was hiredas the project consultant to assist in the coordination and development of theinitiative. The major components of the grant included the development of aconsumer health Web portal, consumer health training sessions for reference

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staff, collection development, wellness programming, and the developmentof promotional items.

WEB PORTAL DEVELOPMENT

Based on current trends of consumer use and the Internet, the library consid-ered the Web portal an integral component of the project. To assist with thedesign and development of the Web portal, a Web designer=developer wascontracted. To develop an effective Web portal, a team headed by the projectmanager and project consultant was formed to meet with the Web develop-ment company. Team members included hospital and community agencyrepresentatives, reference librarians, health librarians, marketing representa-tives, and the Library System’s training coordinator. The goals of the projectprovided the framework, while the initial tasks included determining (a) thesite’s purpose, (b) the intended audience, and (c) the content. Several meet-ings during a six-month period were necessary to ensure that progress andthe goals set were met.

Perhaps the most difficult design decision involved determining broadcategories to direct online users to topics they could easily identify. Severalother successful consumer health Web sites were examined to provide addi-tional guidance, including the Medical Library Association Consumer HealthSection (CAPHIS), Crandall Public Library, and Phillyhealthinfo.org.8,9,10

After several meetings, a consensus evolved on the nine broad categories.

1. alternative and complementary therapy2. conditions and diseases3. drugs and supplements4. health and finance5. health by age and population groups6. local providers and services7. medical and lab tests8. nutrition9. wellness and health.

As the project progressed, additional features were added to enhanceusability and content. Since the project was designed to serve the needs ofthe local community, it was important to have a category dedicated to localcommunity health resources. The local focus was maintained through thechoice of the URL—<http://www.healthylancastercounty.org>.

Additional features were added to encourage users to return to the site.RSS health news was incorporated into the site. The New York Times RSShealth feed and the local Lancaster News RSS health feed were added. Anew section highlighting a health issue of the month was added, providing

350 C. Daley and M. A. Heltshe-Steinhauer

current information and news related to a National Health Observation. A‘‘Health Issues’’ section highlights current health events at the public librariesand health care providers. This provides the user with a ‘‘one-stop shop’’ ofall health-related events in the county.

A review process was developed to ensure all information on the Webportal was reliable, credible, and lacked commercial bias. All Web portal con-tent was vetted to specialists in the fields. This was a lengthy but valuableprocess. Each category inclusive of links and descriptors was channeled tospecialists within each of the four local hospitals. Content was only migratedto the Web portal upon approval from the specialist in the field.

Despite the comprehensive content review process, a disclaimer was stillnecessary. The disclaimer reiterated that the information contained within theWeb portal is not intended to take the place of expert medical advice.

The beta site was previewed at a special consumer health event. AndreaKenyon, director of public health and community outreach at the College ofPhysicians of Philadelphia, presented ‘‘Improving Health of the Community-Consumer Health and Public Libraries.’’11 Kenyon is also the project directorfor the PhillyHealthInfo.org consumer health project. The beta site wasrevealed following the presentation.

A focus group session was conducted following the event. It consistedof academic library members, academic faculty, community members, part-ners, and public library members. The beta site was well received with minorrecommendations. One recommendation was the addition of a multilingualtab containing consumer health links in multiple languages. A second recom-mendation was to provide a direct link to search the library systems catalogof consumer health resources. Both of the recommendations were easilyimplemented.

Additional focus groups were scheduled. The focus groups providevaluable input regarding the usability and relevancy of the content. Focusgroups were conducted with various demographic groups including teens,new parents, business groups, and senior citizens. The recommendationswere further reviewed to determine the appropriateness and feasibility ofimplementation.

There was interest in exploring options to solicit feedback on anongoing basis. A ‘‘send us your feedback’’ form was added to the Web portal.Users now have the option to tell us if their information needs were met.

The collaborative efforts produced a user-friendly consumer health Webportal available at <http://www.healthylancastercounty.org> (see Figure 1).

TRAINING SESSIONS FOR REFERENCE STAFF

The public library reference staff is often the first contact for consumer healthquestions. It is imperative that the staff is well informed of available resources

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and comfortable with responding to consumer health questions. An initialquestionnaire was developed and distributed to all reference staff to deter-mine training needs.

The training component of the project was completed by theMid-Atlantic Region National Library of Medicine. As an affiliate member ofthe National Network of Libraries of Medicine (NN=LM), health referencetraining classes are offered for library staff free of charge. Ongoing healthinformation training sessions will be sustained beyond the grant period. Ashealth information is constantly changing, the provision of ongoing trainingis a vital component of the project.

Based on the initial staff survey, four training sessions were scheduled.The descriptions of the courses were provided by the National Network ofLibraries of Medicine, Middle Atlantic Region, 2008.12

Session 1

An Apple a Day (4 hour session)URL: <http://nnlm.gov/training/consumer/apple/>Description:Overview of reference skills for provision of consumer healthinformation services for the public. Participants learn about information-seeking behaviors of consumers, health literacy, the reference interview,

FIGURE 1 www.healthylancastercounty.org.

352 C. Daley and M. A. Heltshe-Steinhauer

consumer health online resources, collection development, communitypartnerships, outreach and marketing. Students will also learn abouthow to stay up to date on consumer health librarianship.

Session 2

Prescription for Success (3 hour session)URL: <http://nnlm.gov/training/consumer/prescription/>Description: This hands-on introductory class to consumer health infor-mation covers the basics of MedlinePlus.gov, DIRLINE, ClinicalTrials.gov,and other reliable Web pages such as those from professional medicalassociations and advocacy groups. It will cover sites devoted to pharma-ceutical information for consumers, drug-interaction databases andherbal information.

Session 3

Will Duct Tape Cure my Warts? Complementary and alternative medicine(4 hour session)URL: <http://nnlm.gov/training/consumer/cam/>Description: Students will learn the history of Complementary and Alter-native Medicine (CAM) and its impact on medical practices. They willlearn how CAM is used, how to avoid bad science and how to look upevidence of the effectiveness of CAM therapies.

Session 4

Caring for the Mind: providing reference services for mental health infor-mation (4 hour session)URL: <http://nnlm.gov/training/consumer/caringforthemind/>Description: Participants will learn how to effectively provide referenceservices for mental health information for the public. Best Web sites,databases, and collection development materials to respond to mentalhealth related questions and handling challenging referenceinterviews.

The training workshops combined PowerPoint presentations and interactiveexercises based on real life questions. A question and answer session con-cluded each workshop. To accommodate conflicting schedules, the work-shops were offered at various times and days.

A pre- and postsurvey specific to each training session was developed.The results of each workshop were analyzed to determine the effectivenessof the training as well as the need for additional training. The results of thesurveys indicated an improved ease of access to reliable resources andincreased knowledge in consumer health resources.

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Upon completion of the series of consumer health courses offered by theNN=LM, the participants were eligible for the Medical Library Association’sConsumer Health Specialist Certification. Of the 66 staff members whoparticipated in the training, eight attendees completed the series and weregranted certification. Subsequent workshops will be offered to allow otherstaff members the opportunity to obtain the certification.

COLLECTION DEVELOPMENT

It was first necessary to evaluate the current consumer health resources. Ananalysis of the individual library consumer health collections was completedwith data retrieved from the libraries’ catalog=circulation system, Millennium.Specific data collected included title, author, publication year, price, year-to-date circulation, last year circulation, location, and total renews. Thesummarized data were then reviewed individually with each of the 14 librarydirectors. All of the library directors recognized their consumer healthcollections needed updating.

To provide additional insight into the community consumer healthneeds, each library agreed to track consumer health questions for athree-month period. The tracking tool provided the libraries with informa-tion regarding the number and types of health questions addressed. Thetool provided a ‘‘snapshot’’ of the questions addressed at the publiclibraries. After the three months, an analysis of the individual library’s logsand the Library System was completed. The information provided addi-tional guidance in the selection of consumer health resources. As shownin Table 1, the largest percentage of questions received was in the areaof conditions and diseases.

A comprehensive bibliography of current, reliable consumer healthresources was created to guide the library directors in selecting consumer

TABLE 1 Library System Totals of Health Questions Received

Subject area Percentage of questions

Alternative=complementary 6%Conditions and diseases 25%Drugs and supplements 11%Health=financial 0Local providers=resources 6%Medical=lab tests 0Nutrition 17%Wellness=health 9%�Other 26%

�Other included questions related to health programs, medical dictionaries, and PDRs.

354 C. Daley and M. A. Heltshe-Steinhauer

health resources. The bibliography was created based on a variety of tools,including:

. Consumer and Patient Health Information Section (CAPHIS) of the MedicalLibrary Association – ‘‘Managing a CHIS-Collection Development.’’13

. National Network of Libraries of Medicine ‘‘Webliography of Print andInternet Resources.14

. Library Journal’s ‘‘Best Consumer Health Books.’’15

. HealthNet’s Connecticut Consumer Health Information Network. ‘‘Recom-mended Books for a Consumer Health Library.’’16

. Toronto Public Library’s ‘‘Core Collection of Recommended Titles.’’17

Guidelines were also developed to assist the libraries in weeding thecollections. These resources provided a foundation for ordering consumerhealth selections that could be tailored to the local population informationneeds.

Currently, 563 new consumer health resources were added to theLibrary System’s catalog. Since the initial addition of the items, 550 items havecirculated with 173 renewals.

HEALTH AND WELLNESS PROGRAMMING

All of the hospitals have agreed to provide health and wellness programmingat the public libraries. The hospitals have provided information about Speak-ers Networks and available topics. Additional programs may be availablebased on individual library requests. Libraries scheduling an event will notifythe Library System to convey the information to be included in the Webportal calendar of health-related events.

COMMUNITY PROMOTIONAL INFORMATION

An effective community outreach plan was essential to the success of theproject. The first plan of action was to develop a logo and tagline. The logoand tagline would be present on all promotional materials and the Webportal. After months of brainstorming sessions and numerous logo designs,the logo (see Figure 2) and tagline (Local and Reliable Health Information,Because Your Health Matters) were created.

All community agencies and organizations were viewed as potentialhealth consumers. Every agency or organization contacted regarding theproject was interested in how it could become involved. This led to

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enhancements in the Web portal as well as potential funding to sustain theproject. Outreach efforts included the following:

. Lancaster Practice Manager Associations

. Lancaster County Public Health Department

. Lancaster County Schools

. Lancaster County Medical Society

. Lancaster Wellness Center

. Lancaster Rotary Group

. Home Care groups

. Special Kids Network

. Lancaster Literacy Council

. Lancaster Hospice

. Willow Valley Retirement Community

. Lancaster Teen Advisory Group

. Lancaster New Mothers Groups

Rack cards were designed to publicize the project and direct people to theWeb site. The primary message conveyed on the rack card is free access to reli-able health information provided by your local public libraries. The contactinformation and locations of the Lancaster public libraries are listed on theback of the card as well as the logos of all partners. The rack cards and Luciteholders were distributed to all public libraries, school libraries, local hospitals,the UnitedWay and their affiliate organizations, and physician offices through-out the county. A database consisting of all local medical practices and physi-cian offices was created. The database was utilized to send out an introductoryletter outlining the health project, a sample rack card, and free order form.

The project was publicized at the Lancaster County Commissionersmeeting on April 16, 2008. Wallet size cards with the Health InformationAccess Network logo and Web portal URL were distributed to the attendees.A brief demonstration of the Web portal was also conducted.

SUSTAINABILITY

The Health Information Web Portal is a one-stop resource for reliable healthinformation to the community. Marketing and promotion of this service mustcontinue as it provides reliable health information to the public and also to

FIGURE 2 Health information access network logo.

356 C. Daley and M. A. Heltshe-Steinhauer

library reference staff in answering consumer health questions asked by theirwalk-in patrons.

The Health Reference Training component will be incorporated into theLibrary System’s regular training schedule, while a standing Reference Com-mittee will assimilate Health Reference topics as part of their yearly in-servicetrainings for reference staff.

Currently, the Web portal is maintained and updated by the Library Sys-tem’s public relations=community relations coordinator with periodic inputand submissions from project partners. The continued sustainability of theWeb portal is directly related to having one person assume responsibilityfor the site’s currency.

FUTURE OPPORTUNITIES

A potential opportunity that would enhance the Health Information AccessProject is to develop effective ways to meet the consumer health informationneeds of the traditionally underserved populations, including minorities andseniors. An additional community needs assessment is essential to determinethe unique needs of these populations. Once those needs are established,future outreach services would be developed and implemented. For this futurecomponent of the project, grant monies would be sought with the collabora-tion between the county hospitals, the United Way, and the Library System.

Innovative initiatives such as the Health Information Access Project holdreal value in communities across the nation because of their collaborativenature. At a time of dwindling resources, public libraries and other commu-nity agencies must band together to provide services that will result in heal-thier communities. The value that this project provides for residents ofLancaster County is best captured in the project’s tagline: ‘‘Local and reliablehealth information, because your health matters.’’

REFERENCES

1. Gray, C. ‘‘Health and Medical Resources: Information for the Consumer.’’ Jour-nal of Library Administration 44(2006): 395–428. Available: Library, InformationScience & Technology Abstracts database. Available: <http://search.ebscohost.com/login.aspx?direct=true&db=1xh&AN=19956277&site=ehost-live&scope=site>.Accessed: January 7, 2007.

2. Institute of Medicine. ‘‘Health Literacy: A Prescription to End Confusion.’’ 2004.Available: <http://www.iom.edu/report>. Accessed: July 10, 2009.

3. U.S. Department of Health and Human Services. Healthy People 2010. 2000.Available: <http://www.healthypeople.gov>. Accessed: July 10, 2009.

4. Sondik, E. ‘‘Healthy People: Focus Area 11: Health Communication ProgressReview.’’ 2007. Available: <http://www.cdc.gov/nchs/hphome.htm>. Accessed:July 14, 2009.

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5. Fox, S. ‘‘Online Health Search 2006.’’ Pew Internet Project. 2006. Available:<http://www.pewinternet.org/Reports/2006/Online-Health-Search-2006.aspx>.Accessed: July 2, 2009.

6. Fox, S., and Jones, S. ‘‘The Social Life of Health Information.’’ Pew InternetProject. 2008. Available:<http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx>. Accessed: July 20, 2009.

7. U.S. Census Bureau. ‘‘2005–2007 American Community Survey 3-Year Esti-mates.’’ Available: <http://factfinder.census.gov/>. Accessed: August 3, 2009.

8. Medical Library Association. ‘‘Consumer Health Information Section.’’ 2009.Available: <http://caphis.mlanet.org/>. Accessed: July 20, 2009.

9. Crandall Public Library. ‘‘Crandall Health Information.’’ 2009. Available: <http://cplhealth.wordpress.com/>. Accessed: July 20, 2009.

10. The College of Physicians of Philadelphia. ‘‘PhillyHealthInfo.org.’’ 2009. Avail-able: <http://www.phillyhealthinfo.org/>. Accessed: July 20, 2009.

11. Kenyon, A. ‘‘Improving Health of the Community-Consumer Health and PublicLibraries.’’ Presentation at the Library System of Lancaster County ConsumerHealth Event, Lancaster, PA, January 18, 2008.

12. National Network of Libraries of Medicine, Middle Atlantic Region. ‘‘Trainingand Educational Opportunities.’’ Available: <http://nnlm.gov/mar/training/>.Accessed: June 10, 2009.

13. CAPHIS. ‘‘Managing a CHIS-Collection Development.’’ 2007. Available: <http://caphis.mlanet.org/chis/collection.html>. Accessed: August 3, 2009.

14. National Network of Libraries of Medicine. ‘‘Webliography of Print and InternetResources (2007).’’ Available: <http://nnlm.gov/outreach/community/weblio.html>. Accessed: July 21, 2009.

15. Bible, B. ‘‘Best Consumer Health periodics of 2007.’’ 2008. Available: <http://www.libraryjournal.com>. Accessed: July 21, 2009.

16. Healthnet: Connecticut Consumer Health Information Network. ‘‘Recommendedperiodics for a Consumer Health Library.’’ Available: <http://library.uchc.edu/departm/hnet/corelist.html>. Accessed: July 21, 2009.

17. Toronto Public Library. ‘‘Core Collection of Recommended Titles.’’ 2006.Available: <http://www.torontopubliclibrary.ca/uni_chi_core.jsp>. Accessed:August 1, 2009.

ABOUT THE AUTHORS

Christina Daley (cd004@lancastergeneral.org) is Library Director, Lancas-ter General Hospital, 555 North Duke Street, Lancaster, PA 17604. Mary AnnHeltshe-Steinhauer (heltshe@lancasterlibraries.org) is PR=Community Rela-tions Manager, Library System of Lancaster County, 1866 Colonial VillageLane, Suite 107, Lancaster, PA 17601.

358 C. Daley and M. A. Heltshe-Steinhauer

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