Running Head: CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES

Consumer Health Information Resources in Medical Libraries How medical libraries in hospital settings can effectively meet the health information needs of consumers

Beth Caldwell Emporia State University LI810 July 22, 2011

CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES Abstract In a time of increased healthcare costs and decreased access to quality healthcare, hospital medical libraries have an opportunity to provide consumer health information resources. Consumers in need of health information may have been recently diagnosed with an illness or condition, or be looking for information for a loved one. They may need individualized information, advice about reliable resources for health information or assistance navigating health related publications and studies. Research shows that these resources create a better image for hospitals, decreases anxiety in consumers, increases health literacy, and takes some of the burden off of health practitioners. This report includes steps medical libraries can take to incorporate or improve consumer health information resources into their library.

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CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES As healthcare costs rise across the United States, and many struggle to gain access to adequate, comprehensive health care, consumers are seeking reliable health information more than ever. Many turn to friends and family or medical websites for information, but the information they find may be confusing, contradictory, or inaccurate. Medical libraries are often overlooked as a resource for people seeking health information, and by health professionals when referring patients to additional information. Many hospital medical libraries make their resources available to patients who wander in, but their main focus is the practitioners, nurses, and researchers who are affiliated with the hospital. This may lead to defunding or underutilization of hospital medical libraries. In the past 20 years, some hospitals and their medical libraries have taken the initiative to address the information needs of consumers. Many hospitals, research universities, and libraries around the country have created consumer health information (CHI) centers or consumer health libraries. According to the National Library of Medicine, there were 937 such centers in the United States in 2008, with at least one in each state (Kennedy). The term consumer can mean a patient of the hospital, patron of the library, or any person in the community who is seeking health information. These consumers may be seeking information about a personal illness condition, an illness of a family member or friend, or for research purposes. How can hospital medical libraries help? How can medical libraries in hospital settings effectively meet the health information needs of consumers? The purpose of this report is to determine if the CHI services provided in hospital medical libraries can benefit the consumer, the medical library, and the hospital as a whole. This report will focus on the initiatives of and research from CHI centers and libraries from the United States and England. The actions and strategies recommended based on available research apply to any medical library wishing to better serve its consumer health information seeking population. 3

CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES Studies about CHI resource centers in hospitals Who are health consumers and what kind of information do they want? Where do they go to find this information? Several studies in the past 10 years have explored these questions, detailing the needs of health consumers and how librarians can serve them. An article published by Tammy S. Brawn (2005), a librarian from the Consumer Health Library at the Methodist Hospital of Dallas, Texas, looked more closely at what health consumers want out of their libraries, this time by asking the staff of such libraries and centers. Brawn set out to evaluate the perceived needs versus the actual needs of health consumers, by posing questions to the discussion listserv of the Consumer and Patient Health Information Section of the Medical Library Association (CAPHIS). The research centered on the following questions: (1) What do your patrons seem to need or want from you? (2) What consumer health services do the physicians and medical community seem to need or want from you? (3) What seems to be lacking most patient’s health information experience? (4) What are your most popular services or materials? What Brawn found, based on her own experience and that of the librarians she surveyed, is that patrons are often in a hurry, and want information they can get quickly and take home. Reference statistics about questions asked of librarians showed that certain health topics came up frequently, allowing the staff to create pamphlets and brochures about the more popular issues. The librarians surveyed also mentioned the services a consumer health library provides beyond information retrieval – often patients and visitors need a quiet, inviting place to take a break from the medical issues they face. The author pointed out that physicians are often perceived as less attentive. “Consumer health librarians have a unique opportunity to fill this gap of compassion and service” (Brawn, 2005). Another study to identify health information seekers and what they want was conducted by the University of Pittsburgh in 2002, this time focusing on those seeking information online (Ketchum, 4

CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES 2005). The researcher found that information seekers on consumer health information websites are often in poor health, and that their use of the website decreases the reliance on health professionals for information. They were found to prefer clean, easy to navigate websites, with links to medical news and alternative medicine. What do users get from their experience of consulting with health information specialists? In 2000, a British study at Bristol’s Frenchay Hospital examined the cognitive, affective and behavioral affects of providing health information to consumers. Neurosciences Librarian Jane Sweetland (2000) found that subjects often forgot the information provided by their doctors, or did not get all of their questions answered. The health information resources were highly valued and empowering to patients. “Before receiving the information, [the respondents] expressed some anxiety about heir diagnosis, not knowing the full implications…the information they had received helped them come to terms with their illness” (Sweetland, 2000). In 2006, researchers from Virginia Commonwealth University set out to explore why consumer health information resource centers in Richmond, Virginia, were underutilized (Kennedy). The study was undertaken because the leadership of the overarching organization, Community Outreach Information Network, felt that the usage of their four consumer health information centers was not commensurate with the service supply. Using a combination of research methods including direct observations, brief intercept interviews, and interviews with stakeholders, the researchers looked at who was using the centers, ways consumers found the centers, and what information was being sought. The centers had already published advertisements and reached out to community organizations. The health consumers entered the centers looking for health information about their illness or diagnosis, advice about credible health websites, general information such as maps or information about other resources at the hospital. Three of the four centers in this network are in the main areas of their facilities, and just over half of the consumers surveyed found the centers by walking by. Another 22

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CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES percent were referred by a health professional. The researchers concluded that to achieve the full service potential of the centers, steps should be taken to make the centers more visible, as well as working with medical staff to increase referrals. The University of Virginia study findings also had implications about the value of CHI resources to the hospital. The vast majority of users surveyed -- 84.5 percent -- said that knowing the information center was present made their attitude about the hospital more positive. All of the users said they would refer a friend or family member to the center. The National Library of Medicine is currently pushing an initiative to improve health information literacy across the country. In 2006, the Jewish Healthcare Foundation collaborated with the Carnegie Library of Pittsburgh to create a Health Information Fellowship for librarians (Zionts, Apter, Kuchta & Greenhouse, 2010). Nurses worked with the librarians participating to address common information needs of public library users through the web, presentations, and pathfinders. This partnership made consumer health a top priority, including information regarding a new diagnosis, chronic diseases, diet and nutrition, and local resources available to the public. “Health care consumers have become more interested and involved in understanding their issues and needs and in making decisions regarding treatment options and services” (Zionts, et al., 2010). Several publications about CHI resources in hospitals discuss the importance of making hospital administrators aware of the value of the library’s offerings. In 2005, Library Trends published a piece about the high number of medical libraries closing across the U.S (Weldon, 2005). This article suggests that the key to future viability lies in collaboration with public libraries, hospital marketing teams, administrators and practitioners. Misconceptions about the role of medical libraries and librarians cause them to be overlooked as in information source for patients. Hospital management teams may be more swayed by proof that CHI resources save their staff time and money. These effects were reported in Library Journal in 1997, in an article by Kathleen Moeller. “Some 54 percent of [consumer health information library patrons] reported lower fear or 6

CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES anxiety levels. Also, 30 percent avoided phone calls to doctors, 26 percent reduced an unsafe habit or practice, 21 percent avoided or reduced medical costs, and 18 percent avoided return visits to the doctor” (Moeller, 1997). Moeller, an advocate for the establishment of consumer health libraries since 1982, outlines the typical types of health information consumer, and what a consumer health collection should contain. The Overlook Hospital in Summit, New Jersey, conducted a customer satisfaction survey in 1993, and the results show that the library is making a difference in users’ health care. Incorporating consumer health information resources in the library Evaluate what information health consumers are seeking. Do consumers want books? Pamphlets they can take home? Internet resources for ongoing research? This should be a first step for a library thinking of establishing or rejuvenating its CHI resources. Consider employing some of the methods reported in the study conducted by Brawn (2005) at Methodist Hospital of Dallas, Texas and at Virginia Commonwealth University’s centers: intercept surveys, survey of other CHI professionals, and conducting needs assessments one-on-one in patient wards. Create a user friendly website with credible health information resources aimed at consumers. According to a Pew Internet Study in 2009, 61 percent of adults search online for health information. Creating a website or web page devoted to consumer health resources is arguably the simplest and most straight-forward action a library can implement to serve consumers. It may be a solution for libraries that do not have the physical space or resources to dedicate to consumer health information. A consumer health information website needs good navigation and reliable information according to a report by Andrea Ketchum, a reference librarian for the University of Pittsburgh Health Sciences Library System (2005). Ketchum reviewed website statistics and surveyed 33 consumer health

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CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES information websites, and found that clean, uncluttered, easy-to-us interfaces with minimal clicking are what consumers want (Ketchum). The health information website may be free, or charge a fee. In a survey of hospital CHI websites conducted by Fulda, Kwasik and Ische in 2003, 52 percent were feebased, commercially prepared resources. While this is a decision that will vary from hospital to hospital, a fee-based service can help defray some costs of CHI resources. The National Library of Medicine is an invaluable resource for both consumers and medical libraries. Its website (http://www.nlm.nih.gov/) has comprehensive lists of websites and resources for consumer health information. Create a consumer health resource center that is open and inviting. Location plays a key factor in whether the CHI resource center will be utilized to its full potential, as seen in the study about the Virginia Commonwealth University’s centers. Placing CHI resources in a public area, where consumers are likely to walk by and notice is an ideal scenario. Another tactic to encourage use is to hold events in the library to draw the public in. This may include holding educational events or training in the space. Evaluate they physical space and location, and create an area for research, computer use, but also a comfortable place to “get away.” Several of the studies reviewed in this report smentioned that people coming in resource centers just needed a quiet place to give them a break from the stress or strain they may be experiencing at the hospital. Some resource centers include amenities such as free wi-fi, or a children’s area. Collaborate with hospital marketing department to promote consumer health services. Teaming up with the hospital’s marketing department will help ensure that the public knows about the hospital’s CHI resources. Marketing can be traditional advertising in print, television, web or radio, but also signage inside the hospital and outpatient medical clinics, brochures about CHI resources distributed at health fairs, assisted living facilities, and public libraries. The added benefit of working with the marketing department is increased recognition from hospital administrators, including those who 8

CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES make decisions about the library’s budget. “With the marketing department on the side of librarians, hospital administrators may see an additional value to the medical library” (Weldon). Reach out to health practitioners for referrals. The study conducted at the Richmond, Virginia COIN centers found that after walk-by foot traffic, the motivation to seek out the center was a referral from a health professional. In 2005, the Atlantic Health System, which includes three hospitals in New Jersey, created a program known as Consumer Library Information Prescription (CLIP) where doctors “prescribe” medical information to be filled by the hospital librarian. Advertise the advancement of services to counteract the negative stereotypes or misconceptions about medical libraries. There may be the misconception out there that the sole purpose of medical libraries is to serve doctors and nurses, or that the only information available is highly scientific or technical texts. Even though many medical libraries are open to the public, this perception exists. Once a medical library has created its CHI resources, the public needs to be made aware that helpful and reliable information is accessible. The idea of promoting an open, useful service with staff members ready to lend a hand and give assistance should be behind every decision when designing the CHI resource library’s space, website, pamphlets and advertisements. Collaborate with public librarians. Ask any public librarian if they receive health related questions from their patrons and you will hear a resounding “yes.” Reference librarians in public libraries estimate that between 6 and 20 percent of total reference requests are health related (Zionts), and that these requests generally take longer to answer. Medical libraries that do not have the physical space for a CHI library in their facility or are

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CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES looking for more outreach opportunities would do well to create a partnership with the local library system. Conclusion Consumer Health Information Libraries are spread across the United States and in hospitals around the world, but they are far from being the standard. Lack of resources, hospital budgeting decisions, have led to the closure of medical libraries in many hospitals. Creating CHI libraries benefits medical libraries, hospitals and their staff, and consumers. The research shows that when provided accurate health information and given assistance in their information search, consumers respond and benefit. Useful health information promotes good health behaviors and lessens anxiety in consumers. A CHI library contributes to a decreased need for follow up phone calls and visits with doctors. It contributes to good public relations for the hospital and adds to a hospital’s positive image in the public eye. It is added value to a patient’s healthcare experience, another valuable service for hospitals to offer. In an age of confusing, overwhelming and inaccurate information perpetuated on the internet, medical librarians can lead consumers from a place of confusion, anxiety and frustration to a place of increased health literacy.

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CONSUMER HEALTH INFORMATION RESOURCES IN MEDICAL LIBRARIES References Brawn, T. (2005). Consumer health libraries: what do patrons really want? Journal of the Medical Library Association, 93(4), 495-496. Consumer and Patient Health Information Section of the Medical Library Association. http://caphis.mlanet.org/ Fulda, P. (2004). Consumer health information provided by library and hospital websites in the south central region. Journal of the Medical Library Association, 92(3). Kennedy, M., Kiken, L., & Shipman, J. (2008). Addressing underutilization of consumer health information resource centers: a formative study. Journal of the Medical Library Association, 96(1). doi: 10.3163/1536-5050.96.1.42. Ketchum, A. (2005). Consumer health information websites: a survey of design elements found in sites developed in academic environments. Journal of the Medical Library Association, 93(4), 496-499. Moeller, K. (1997). Consumer health libraries: a new diagnosis. Library Journal, 117(12), 36+. Sweetland, J. (2000). Users’ perceptions of the impact of information provided by Consumer Health Information service: an in-depth study of six users. Health Libraries Review, 17, p. 77-82. Weldon, S. (2005). Collaboration and Marketing Ensure Public and Medical Library Viability. Library Trends, 53(3), 411-421. Wells, K. Cost savings of closing, downsizing, resource cutting, and outsourcing: myth or truth? Medical Library Association white paper. Retrieved from Medical Library Association website: http://www.mlanet.org/pdf/resources/wells_myths_truths_0610.pdf Zionts, N. D., Apter, J., Kuchta, J., & Greenhouse, P.K. (2010). Reference & User Services Quarterly, 49(4), 350-359. 11

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