HEALTH LITERACY

Deborah T. McConnell, Column Editor

Creating an Internet Consumer HealthResource for Western New York Breast

Cancer Patients

DEBORAH T. MCCONNELLUniversity at Buffalo, Buffalo, New York, USA

After a breast cancer diagnosis, it is important to locate quality,reliable information in order understand, explore, and discusstreatment options available to patients with their oncologists andhealth professionals. This column explores the creation of a con-sumer health resource for breast cancer patients and families usingvarious Web 2.0 tools such as wikis and an RSS Feed.

KEYWORDS Breast cancer, consumer health, Web 2.0

INTRODUCTION

Each day thousands of women are newly diagnosed with breast cancer in theUnited States. Due to advances in digital mammography and other diagnostictesting, cancers are being detected at earlier stages. Women with a new diag-nosis experience fear and anxiety when faced with this life-altering challengeand may be ill-equipped to wade through the technical literature to findanswers and information about their condition. Breast cancer patients needto be able to talk with their oncologists and other caregivers intelligentlyto determine the best course of treatment in dealing with a devastating diag-nosis. It is also necessary to learn about creating the most healthy lifestylepossible following treatment in order to lessen the chance of recurrence. This

Address correspondence to Deborah T. MCConnell, MLS, is Assistant Librarian, Referenceand Education, University at Buffalo Health Sciences Library, 3435 Main Street, Buffalo, NY14214. E-mail: dtc3@buffalo.edu

Journal of Consumer Health on the Internet, 15(2):207–211, 2011Copyright # Taylor & Francis Group, LLCISSN: 1539-8285 print=1539-8293 onlineDOI: 10.1080/15398285.2011.573366

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resource was created for breast cancer patients and survivors and morespecifically aimed at women in the Western New York area.

WHO WOULD BENEFIT FROM THIS RESOURCE?

In the last decade, breast cancer has touched the lives of most people,whether it is a personal diagnosis, a family member, a coworker, or a friend.When first given a diagnosis, many turn to the Internet for information to tryto make sense of their diagnosis. Finding quality, reliable consumer healthinformation to help understand a potentially life-threatening illness can bea very difficult task. According to New York State Department of Health’sdata set, women in the Western New York area have the highest rate ofnew breast cancer diagnoses: 162.5 per 100,000 women, the highest in thestate, with the statewide rate being 139.2 per 100,000 women.1 Erie County,the home of the University at Buffalo (UB), has the highest rate of new cancerdiagnoses of any Western New York county. Since UB serves not only theacademic community but also the Western New York community, it seemedhighly beneficial to provide a consumer health breast cancer resource for thispopulation and to host it on the UB’s wiki page.

CHOOSING A PLATFORM

This resource was constructed using Web 2.0 tools, more specifically, a wikiplatform, and housed on the University at Buffalo’s Health Sciences Libraries(UBHSL) wiki page, under collections and resources. The advantage of thewiki tool is the ease of editing from any location with an Internet connection,which can allow for multiple contributors to the resource. Since this resourcepage is located on an official UB Libraries page, editing privileges were pass-word protected by an administrator. Given that breast cancer information isconstantly evolving, with results of new studies and clinical trials being pub-lished weekly, information must be reviewed constantly for relevancy andaccuracy.

LOCATING MEANINGFUL INFORMATION

Breast cancer awareness is a very hot topic in the media. It has become sopopular that one can scarcely get through a day without seeing advertisingfor a ‘‘pink ribbon’’ cause. Until a breast cancer diagnosis becomes pertinentin one’s life, the notion of obtaining more information is often irrelevant. Fora cause that has garnered so much publicity and support, many people stillsurf the Internet blindly in search of information, often relying on the topmatches in a Google search, thereby missing quality and reliable information

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sources that may be buried further down the results page. One of the topconcerns of a newly diagnosed breast cancer patient is the stage of the breastcancer and the survival rate. Women and their families are frightened andconfused, and sorting through technical literature is a difficult place to startwhen anxious about survival or survival of a loved one.

In populating this resource, sources were chosen from broad generalsources to resources more specific to the Western New York community.Very broad general resources such as MedlinePlus1, the American CancerSociety, and the National Cancer Institute were included in the first sectionentitled General Information. The author believes this general informationis what most patients will be seeking at the beginning of a diagnosis. Infor-mation regarding terminology used to describe their disease and encyclo-pedic information describing such things as staging, various treatments,and how they can expect to feel as they move through the various stagesof treatment are not only beneficial but also important to a newly diagnosedbreast cancer patient.

EDUCATION, CLINICAL TRIALS, AND STUDIES

Other sections that were included in the wiki were those of education andclinical trials and studies. In the education section, sites that offered infor-mation in other languages, such as Cancer Resource Center of the FingerLakes, and those that offered unique programs were included. One suchunique program is through the Cancer Wellness Center of Western NewYork. This organization offers sophomore medical students the opportunityto participate in a program designed to instruct them in the methods ofdelivering bad news. Those newly diagnosed with breast cancer and thosewho are in the midst of their treatment may benefit from participation inclinical studies and awareness of the results of recently completed studies.Therefore, resources pertaining to clinical trials such as Clinical Trials.gov,eCancer Trials, Center Watch, and the Sister Study were included in thissection.

LOCAL SUPPORT AND PROGRAMS

Support while coping with a diagnosis, while undergoing treatment and inthe months and years following an illness, can be beneficial to patients. Inbuilding this resource, the author noted how many support programs wereavailable to women and their families undergoing treatment and recoveryboth nationally and in the Western New York area. Two important programsin the Western New York area have been included in this resource.

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According to a 2005 study and a 2009 randomized controlled trial, ithas been shown that exercise may play an important role in preventingrecurrence in those previously diagnosed as well as reduce the risk of mor-tality from breast cancer.2,3 It has also been shown to be beneficial duringtreatment, as well as in the period immediately following cancer treatmentin improving both physical and psychological rehabilitation outcomes.4

The first resource support program to be highlighted is the Hope Chest Dra-gon Boat team. Formed from breast cancer survivors of all ages and fitnesslevels, this unique paddling and exercise program’s aim is to empower sur-vivors to take an active role in their emotional and physical healing. HopeChest also hopes to raise awareness with regard to early detection and find-ing a cure for breast cancer. For more information on the Hope Chest pad-dling program see <http://www.hopechestbuffalo.org/>.

The second local resource highlighted is WeCanRow–Buffalo. Foundedby breast cancer survivor Lisa DeMarco and established as a regional chapterof the national WeCanRow program founded in 2002 by Olympic gold med-alist rower Holly Metcalf, DeMarco joined the University at Buffalo in 2009 tocreate a rowing program to aid female cancer survivors in improving theirself-image and building strength. The group works with the coaches of thewomen’s crew team at the University at Buffalo and with several membersof the team who come out to train with the survivor team. Members of theUB crew team train with the WeCanRow team and are inspired by members’strength and determination. Participants are at different stages of recoveryand draw inspiration from each other. The team also works closely with aphysiotherapist, who screens each participant and assesses their strength,flexibility, and motion and provides advice on how to get in shape and avoidinjuries. More information about the program can be found at <http://wecanrowbuffalo.com/>.

BOOKS, NEWS, AND ADDITIONAL RESOURCES

Patients facing breast cancer treatments are extremely interested in readingabout their disease and their diagnosis. A book section was added to the wikiwhich highlights resources that can be found in the UB libraries. Additionalresources that can be found at the area public libraries will be added to thissection of the wiki at a later date. In an effort to take advantage of other Web2.0 tools, a news section was recently added to the wiki to highlight relevantarticles from research institutions and general news publications regardingnew breast cancer treatments and news articles about breast cancer studies.This section will be the most challenging to maintain. Since new informationis published daily, news sources will have to be scanned and vetted on a reg-ular basis for this section to maintain relevancy for the intended audience. AnRSS feed and e-mail alert was set up by the author for this subject in order to

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have the most up-to-date information delivered to the author to be vetted forboth reliability and relevancy. Also in the future, users will have the ability tosubscribe to the page via RSS feed and will be alerted to any new informationadded to the page.

CONCLUSION

One of the most challenging aspects of dealing with a breast cancer diagnosisis overcoming the initial fear that comes with lack of information and under-standing. With the rise in cancer diagnoses, particularly in the Western NewYork area, a quality consumer health resource was developed for breast can-cer patients and their families in Western New York. It is hoped that thisresource will help to alleviate some of the fear and confusion of such a dev-astating diagnosis and provide valuable information and support to patients,survivors, and their families.

REFERENCES

1. New York State Department of Health. ‘‘Female Breast Cancer – Deaths andDeath Rates Per 100,000 Female Residents.’’ (May 2009). Available: <http://www.nyhealth.gov/statistics/chac/cancer/ca_bre.htm>. Accessed: February 2,2011.

2. Holmes, M.D.; Chen, W.Y.; Feskanich, D.; Kroenke, C.H.; and Colditz, G.A.‘‘Physical Activity and Survival After Breast Cancer Diagnosis.’’ JAMA 293, no.20 (2005): 2479–2486.

3. Rogers, L.Q.; Hopkins-Price, P.; Vicari, S. et al. ‘‘A Randomized Trial to IncreasePhysical Activity in Breast Cancer Survivors.’’ Med Sci Sports Exercise 41, no. 4(April 2009): 935–946.

4. Spence, R.R.; Heesch, K.C.; and Brown, W.J. ‘‘Exercise and Cancer Rehabilitation:A Systematic Review.’’ Cancer Treat Rev 36, no. 2 (April 2010): 185–194.

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