Organizing for a Patient 1

Organizing Information for a Patient and Their Family

Andrea McCullough
Emporia State University SLIM Program

Organizing Information for a Patient and Their Family

This annotated bibliography is a compilation of resources for medical libraries about

organizing information for patients and their families. This audience can be anyone of any age,

ethnicity or socioeconomic background. Therefore the considerations in organizing information

for this audience are vast. They include information literacy, patient education, new technologies

and the pace at which patients are using these, and outreach among others. Each resource will

reference one or more of these issues. The annotations have been grouped into four categories:

overviews, print resources, online resources, and upcoming resources.

Overviews

Institute for Family-Centered Care. (2000). Selecting and organizing materials. Creating and

enhancing patient and family resource centers (pp. 145-162). Bethesda, MD: Institute for

Family-Centered Care.

The Institute for Family-Centered Care is a non-profit organization that promotes

collaboration between families and their health care providers and institutions in the decision-

making process. The publication is designed as a guide to assist in the development of new

patient and family resource centers as well as to help evaluate and maintain existing centers. The

chapter on selecting and organizing materials provides examples from centers around the country

in their own words. One resource center shares the most frequently asked about topics by

patients and consumers throughout the region they serve. There is also a table that compares the

pros and cons of several classification systems including Dewey Decimal, the Library of

Congress, the U.S. National Library of Medicine and other less well-known systems. The book

could be easily read by a layperson even though the intended audience is health care institutions.

Written and published by the Institute for Family-Centered Care, bias is apparent. However, the

inclusion of examples of how patient and family resource centers are managed from around the

U.S. balances the bias and proves useful for any medical library interested.
 Organizing for a Patient 3

Barclay, D., & Halsted, D. (2001). The Medical Library Association consumer health reference

service handbook. New York: Neal-Schuman Publishers, Inc.

Both authors of this Medical Library Association sponsored handbook have worked and

taught extensively within the field of medical librarianship. The first two parts of the book are

concerned with reference for health care consumers. Part three speaks more to organization

issues of health information. Chapter nine, “Creating Effective Print Consumer Health

Publications for Your Users”, provides instruction on how to organize and write different types

of publications including bibliographies, referrals, how-to information and fact sheets. In chapter

ten, “Building Consumer Health Web Sites for Your Users”, the basics of creating and managing

a useful website are discussed. These chapters provide hands-on instructional information for

delivering information down to details such as text alignment and typeface. The handbook is

written clearly and is easily readable for all audiences. Published in 2001, there is sure to be

information and conventions discussed that are now obsolete. However, the aforementioned

chapters provide substantial baseline information that can still be appreciated.

Print Resources

Cosgrove, T. (1994). Planetree health information services: Public access to the health

information people want. Bulletin of the Medical Library Association, 82(1), 57-63.

A dated but unique insight on the creation of a classification scheme developed for

consumer health information at Planetree Health Resource Center. Planetree is an independent,

non-profit consumer health organization that focuses on the concept of patient-centered care;

they believe all patients should have access to adequate health information. The center is a
physical library with a collection developed in response to their user’s needs and requests. An

example of this is a directory of national and local voluntary health organizations and support

groups. The collection is organized, as mentioned in “Creating and Enhancing Patient and

Family Resource Centers”, using layman terminology developed with input from users,

community members and advocacy groups to ensure cultural competency. The classification

scheme is said to be constantly evolving to reflect new subjects and perspectives. An appendix is

provided of an overview of the classification scheme. Cosgrove was, at the time of publication,

the Director of the Planetree Health Resource Center, so bias is assumed. However, her

explanation of the operation and organization seems logical and transparent.

Williams, M., Wilder-Gish, K., Giuse, N., Sathe, N., & Carrell, D. (2001). The patient

informatics consult service (PICS): An approach for a patient-centered service. Bulletin

of the Medical Library Association 89(2), 185-193.

This is a descriptive report on a program implemented at the Eskind Biomedical Library

at Vanderbilt University Medical Center called the Patient Informatics Consult Service (PICS).

Clinicians use a prescription form developed for the service to request information for their

patient, who then contacts a PICS librarian who provides an information packet that includes

resources for laypersons, medical literature and other authoritative information. All resources are

summarized by the librarian and relevant information is highlighted. Additionally, the librarians

have created a pathfinder database designed to re-use the information packets and reduce

redundant searches. Evaluations from clients and clinicians were collected and have been

positive, but the authors admit that additional data would be necessary to truly gauge the value

and impact of the service. This article provides a look into a practical service that could be
 Organizing for a Patient 5

provided by any medical library in coordination with clinical staff. An appendix is included

which goes into detail the editorial guidelines for including information into the PICS pathfinder

database; a useful resource in and of itself. The five authors are employed by the medical center,

one working solely as the coordinator of the service, therefore bias is assumed, especially in the

absence of mention of barriers or challenges with the service.

Magnan, D., DellaFave, K., & Reich, B. (2009). Using an integrated library system to create a

patient education database. Journal of Hospital Librarianship, 9(3), 286-293.

This journal article is a descriptive account of collaboration between the medical library

and the patient and family education committee at the Hackensack University Medical Center.

The project involved pooling all patient education materials (most in paper format), which had

been collected and/or written by the individual clinical departments throughout the hospital and

creating a database of these that could be accessed from anywhere by any health care

professional in the hospital in order to provide immediate and global access. The patient

education department developed policies and procedures for cataloging the materials and the

medical librarians were responsible for the creation of the database using a new Integrated

Library System (ILS). Medical Subject Headings (MeSH) were assigned to each item, as well as

other bibiliographic data. Similar to the PICS program described by Williams, Wilder-Gish,

Giuse, Sathe & Carrell (2001), a project such as this is feasible within most medical libraries.

Involvement in with the patient education materials provided to patients is necessary to eliminate

possible duplication of information given to them, and to provide complementary resources. The

authors were all involved in the project, so bias is possible, however, the account seems

objective.
Esparaza, J. (2008). Consumer health services in hospitals: The front line for health literacy. In

Kars, M., Baker, L., & Wilson, F. (Eds.), The Medical Library Association guide to

health literacy (pp. 217- 242). New York: Neal-Schuman Publishers, Inc.

Written by Julie Esparaza, a seasoned medical librarian currently a clinical medical

librarian at the University of Louisiana at Shreveport, the chapter is an overview of what

consumer health services are provided by hospital libraries to both hospital staff and consumers,

as well as how hospital libraries are dealing with the issue of health literacy. The author

conducted a national survey of hospital libraries, examined their responses and tied the responses

to evidence from her literature review. Topics include internal partnerships, collection

availability, information packets, outreach services, and partnerships and services. The data

collected on information packets is extremely useful to examine trends in how hospital libraries

are organizing and providing information for consumers. The detail and format of information

provided to consumers is discussed. The Planetree Health Resource Center models are

mentioned, as is the PICS program. Other examples include how a patient education element ties

in with providing health information to patients. The author was heavily involved in cultivating

the information via the survey, but no bias is detected. She describes her findings plainly and

associates them with the literature seamlessly.

Online Resources

Lewis, D., Eyenbach, G., Kukafka, R., Stavri, P., & Jimison, H. (Eds.). (2005). Consumer health
 Organizing for a Patient 7

informatics: Informing consumers and improving health care. New York: Springer

Science+Business Media, Inc.

An edited book compiled of chapters written by various clinicians, medical informatics

professionals and information professionals concerned with the issues of consumer health

informatics and the patient-empowering theories that drive the field. Of particular interest to the

medical librarian in terms of organizing information are chapters three (“Tailored Health

Communication”), four (“Design and Evaluation of Consumer Health Information Web Sites”),

five (“Information Delivery Methods”), and twenty (“CHESS: 10 Years of Research and

Development in Consumer Health Informatics for Broad Populations, Including the

Underserved”). An important component of consumer informatics is the use of computers and

telecommunication services to deliver information. The digital divide is discussed, but solutions

are not presented. All chapters are academic in nature, citing much research and providing charts

and graphs. The information is dense and would not be advisable for a lay person. However, it is

a rare comprehensive collection of information about consumer health informatics.

Pratt, W., Hearst, M., & Fagan, L. (1999, November). A knowledge-based approach to

organizing retrieved documents. Paper presented at the American Association of

Artificial Intelligence Fall Symposium, North Falmouth, MA.

A summary of a research study presented at a 1999 American Association for Artificial

Intelligence symposium describing the use of a tool called DynaCat which categorizes and

organizes documents retrieved in Medline searches by laypeople. The researchers involved are

Wanda Pratt, who is currently an Associate Professor at the University of Washington’s

Information School and Division of Biomedical & Health Informatics, Marti Hearst, professor at
both the University of California at Berkeley School of Information and the Computer Science

department, and Lawrence Fagan, co-director of Stanford University’s program in Biomedical

Informatics. The article is not overly technical and is an easy read for those who are familiar with

theories of information organization. The research outcomes are very positive, with all

participants determining that the DynaCat tool makes sense and is helpful. However, the findings

are based on only fifteen participants and the feasibility of using a tool such as DynaCat in a

small medical library is unlikely. The article is ten years old, so it is possible that this type of

knowledge-based tool may be out-of-date.

Kenyon, A. (2005). Philly health info: The College of Physicians of Philadelphia's regional

community health information project. Library Trends, 53(3), 457-463.

Andrea Kenyon, Director of Public Health and Community Outreach at the College of

Physicians of Philadelphia, describes a regional community health information model

implemented by the College intended to help guide health care consumers, especially those who

may be underserved, to reliable health information on the Internet as well as provide a directory

of regional health services. Potential users were administered a survey and focus groups were

conducted to identify the needs of the community. A Web portal was created that includes ten

health information Web sites, the aforementioned directory and information on a currently

relevant health topic for the community which revolves quarterly. To avail the portal to the

underserved, kiosks at area libraries were set up accompanied by a volunteer to assist users. That

the service was created with the user in mind is of great value. However, the portal’s

effectiveness is questionable. The visitors are asked to complete a survey on their satisfaction

after using the service, but this data is not included. This article could be of interest to medical

library staff concerned with organizing information for community outreach.

 Organizing for a Patient 9

Siegel, E., Logan, R., Harnsberger, R., Cravedi, K., Krause, J., Lyon, B., Hajarian, K., Uhl, J.,

Ruffin, A., & Lindberg, D. (2006). Information rx: Evaluation of a new informatics tool

for physicians, patients, and libraries. Information Services & Use, 26(1), 1-10.

This report describes the results of an evaluation of the Information Prescription

Program, or “Information Rx”. Similar to the information prescription method described by

Williams, et al. (2001), prescription pads are used by physicians to refer their patients to the

MedlinePlus website using the terminology noted by the physician. Findings show that

physicians found the program useful and effective in promoting self-efficacy and improving

patient-physician communication. From the patient perspective, they trusted the information

because it was recommended by their doctor and thought the program helped them communicate

better with their doctor. Of most interest to medical libraries is the finding that patients thought

the recommendation was a catalyst for further health information seeking. For medical libraries,

this could mean patients may already be familiar with MedlinePlus and are looking for more in-

depth information. Not directly related, but worth noting is that the patients also reported that

reading health information on a computer is as easy as reading it in hardcopy format. The

research study was funded by the NLM and the American College of Physicians Foundation. The

authors are all affiliated with one of these organizations but because it is a research project, no

biases were detected. The limitations of the study were not reported.

Lacroix, E. M., & Backus, J. E. (2006). Organizing electronic information to serve the needs of

health practitioners and consumers. Library Trends, 54(4), 607-619.

Eve-Marie Lacroix and Joyce Backus, both in the Public Services division of the U.S.

National Library of Medicine (NLM), author this descriptive piece on how the NLM has
historically served the needs of a variety of users. As in Kenyon’s (2005) article, assessing user

needs is a component of how information is organized. Of particular interest is the origination of

MedlinePlus.gov in response to survey findings that over 30% of MEDLINE/PubMed users were

health care consumers in addition to its intended audience of health care professionals, librarians

and scientists. Lacroix and Backus explain that MedlinePlus is continuously being adapted to

meet the needs of users, an example being the expansion from the original organization of twenty

original health topics to over 800 today. Coincidentally, MedlinePlus changed its user interface

again in October 2009, so it would seem that the methods and goals of the NLM outlined in this

article in regards to MedlinePlus have not changed. Missing from this article is any reference to

the NLM’s consideration of like organizations or websites for comparison and/or idea gathering.

Either the NLM’s work is created in a vacuum, or this indicates bias by the authors.

Alpay, L., Verhoef, J., Xie, B., Te’eni, D., & Zwetsloot-Schonk, J. (2009). Current challenge in

consumer health informatics: Bridging the gap between access to information and

information understanding. Biomedical Informatics Insights, 2, 1-10.

Like Pratt, Hearst and Fagan (1999), this article is concerned with presenting information

retrieved online in a way in which consumers can easily understand. The authors’ areas of

expertise are medical informatics specialist, information specialist, clinician and management

specialist, respectively. Their desire to produce tools that contextualize and personalize

consumer health information using information seeking behavior and communication theory is

based upon their own research. They cite predictors of consumer’s online health information

seeking behavior as the degree of engagement and the degree of independence in health care

decision making, as well as age, gender, education, race/ethnicities and computer/internet

 Organizing for a Patient 11

experiences. They believe users can then understand better the information found with a tool

using these predictors along with the cognitive style of the consumer. Because the development

of such a tool is beyond the scope of most medical libraries, and because the article is so

theoretical, it is not of practical use for the medical librarian. However, the investigation into the

needs of healthcare consumers is deep and could be reason alone to read the article.

Upcoming Resources

Detmer, D., Bloomrosen, M., Raymond, B., & Tang, P. (2008). Integrated personal health

records: Transformative tools for consumer-centric care. BMC Medical Informatics and

Decision Making, 8(45). doi:10.1186/1472-6947-8-45.

A summary report of a roundtable meeting sponsored by Kaiser Permanente Institute, the

American Medical Informatics Association, and the Agency for Healthcare Research and Quality

about integrated personal health records (PHRs). PHRs are described as tools to promote patient

collaboration in healthcare delivery and decision making; they place more information in the

hands of patients. The report includes the background of PHRs, different models currently being

used, their functionality, their potential and the barriers of their use. The information is presented

factually and in a balanced way. However, one of the four authors, Paul Tang, has possible

competing interests: he served on Google’s Google Health Advisory Council which was

involved in Google Health, a type of PHR. This relationship was dissolved before the article was

written. The intended audience could potentially be anyone from healthcare policy makers to

patients alike. Although PHRs are not of obvious interest for medical libraries in terms of

organizing information for patients, it is advantageous to be aware of their development; in the

future, tailored health information for the patient could easily be included in their function.
Shaprio, J. (2009, November 16). Patients turn to online community for help healing. National

Public Radio. Retrieved from http://www.npr.org/templates/story/story.php?

storyId=120381580

A news report on PHR services offered by companies such as Google, Microsoft and

MyHealthInfo.com and their increasing demand by patients. Citing research by the Pew Internet

and American Life Project and a study in the New England Journal of Medicine, so-called “e-

patients” are using internet social networking sites to post information about their health

conditions, medications they are taking and their experiences. The information is tagged and

shared within a social networking model. Health records can be uploaded, reference links are

available to search for related information and some offer connections to a health care

professional. Also mentioned is the gap between patient usage of electronic medical records and

health care professional and hospital usage. While this report is only an overview, it underscores

the way patients are demanding their medical information be organized and managed. The

National Public Radio report is an independent news organization, so no bias is detected. The

article is short and readable and is accompanied by an option to hear the audio news report dated

November 16, 2009.