A personal weapon in the war on chronic illness

A Personal Weapon In the War On Chronic Illness: Expert Patients and Their Use of Health Information Teresa Hartman, MLS Diane Tobin Johnson, MLS, Ph.D. Medical Library Association Annual Meeting, Philadelphia, PA May 20, 2007

Why This Presentation Is Important Trends from 1960 onward show that patients and their families want more, not less, information about cancer (3,8) Research shows that people use a variety of sources to gather information including personal sources such as friends and neighbors (4) Eight of 10 Americans now search online for health information (6) People find it more comfortable to use personalized information - it is not sloppiness on their part Librarians need to consider how to provide not only accurate information, but information online in a more personalized format Hartman & Johnson, 05/20/07

Who are health information searchers? According to Pew Internet Life report (6) 8 in 10 go online for health information in all adult cohorts (18-70+) 36% look for information for themselves 48% look for information for others 8% look for both themselves and others 66% of health information seekers begin at search engines 72% begin at two or more sites Blogs don’t frequently show up in search engines, but that may change Hartman & Johnson, 05/20/07

The problems associated with lay provided information are legion… Professional assessment of quality and accessibility of health information on the Internet is mixed. For example: Berland et al. (2001) looked at 25 E-health websites (2) 45% of English-language sites accurate 22% of Spanish-language sites accurate Both types required high school or above reading ability Friedman et al. (2004) looked at 55 cancer websites (5) 64% required college-level reading ability Hargrave et al. (2003) looked at 22 pediatric neurology sites (7) 59% rated “poor” for content Most required college-level reading ability Hartman & Johnson, 05/20/07

There are success stories with lay-provided information There are successes with lay-provided information offline: Chronic Disease Self-Management Program Stanford Patient Education Research Center, Kate R. Lorig, primary investigator Expert Patient Programme, National Health Service, United Kingdom Hartman & Johnson, 05/20/07

The driving forces behind expert patient programs Population shifts, health expenditures drive interest in expert patient programs Chronic disease incidence increases as population ages (14) By 2030, 20% of Americans (72 million) will be 65 or older Expense associated with chronic disease increases 70% of health care costs are associated with chronic disease (14) Hartman & Johnson, 05/20/07

“Big three” chronic diseases Heart disease, diabetes, and cancer (14) cause 7 out of every 10 deaths in the US affect the quality of life for 90 million Americans Hartman & Johnson, 05/20/07

Roles of Information Prevention, treatment, and survival Six functions of information for cancer patients (12) - to gain control - to reduce anxiety - to improve compliance - to create realistic expectations - to promote self-care and participation - to generate feelings of safety and security Hartman & Johnson, 05/20/07

Patients use the web to find that information Even doctors acknowledge the importance of “additional resources” (8): “In addition to better communication and counseling skills by oncologists, patients need additional resources to satisfy information needs and to achieve greater participation in their care.” Hartman & Johnson, 05/20/07

So, what is an expert patient? Expert patients (1): - know the quality of their lives is primarily up to them -believe they can exert significant control over their lives - are determined to live a healthy life despite their chronic condition -are realistic about the impact of their disease -have worked out what services exist and utilize those services appropriately Hartman & Johnson, 05/20/07

Foundation of expert patient programs Work in the US and the UK is founded on: Theories of social learning and self- positive role models Includes the belief that one can influence outcomes Ideal participants have willingness to take responsibility and take action Hartman & Johnson, 05/20/07

Critical characteristics of expert patients seeking and using information is part of influencing outcomes sharing information is part of being a positive role model a significant part of seeking, using, and sharing does and will take place online(1) Hartman & Johnson, 05/20/07

Why Look at Bloggers for Expert Patients Sheer numbers: 79.2 million blogs are being tracked by Technorati (13) Many types of blogs and blogs are evolving (9): personal journals ffilter blogs corporate blogs professional knowledge blogs civic citizen blogs Hartman & Johnson, 05/20/07

People experiencing severe illness often write personal journal blogs to: communicate with their support group keep track of their own understanding of their condition get feedback from others actively link with resources Hartman & Johnson, 05/20/07

Spotting an Expert Patient’s Blog Expert patients blogs: have a sense of audience that goes beyond family and friends show evidence of actively seeking a variety of information from a variety of sources talk about treatments beyond their own course of treatment share links that could be useful to others Hartman & Johnson, 05/20/07

Methodology We used grounded theory to examine a series of blogs written by cancer patients and their families, distinguishing personal journal blogs from expert patient blogs. Hartman & Johnson, 05/20/07

What we looked for How did the blogger : handle the “personalizing” of the blog? make personal connections? start and follow a trail of thought within the blog? Include or exclude reader’s comments and responses? Hartman & Johnson, 05/20/07

Serving Bloggers’ Information Needs Librarians continue and expand use of social networking software to personalize information service & resources according to patron groups Create liaison positions to serve specific groups of health information consumers Hartman & Johnson, 05/20/07

Customer relationship building Librarians should consider using social networking software in addition to their other online methods of building relationships with their customers. Relationships can be better built through blogs than web pages (9) Hartman & Johnson, 05/20/07

Future Research studies that assess the impact of information on quality of life for cancer patients studies involving measures of self-efficacy and people who write expert patient blogs studies that compare lay-led self-management group results with results of blog users studies that assess the quality of information on expert patient blogs and the use of links to high-quality cancer information resources Hartman & Johnson, 05/20/07

quot; I'm personally convinced that people facing an illness/disability (as well as spouses, parents, families, etc.) want health information online not just as it can be downloaded or shoveled out, but within the context of a supportive community of peers (sort of a live Consumer Reports team analysis).” -Ed Madara, M.S. American Self-Help Clearinghouse St. Clare’s Hospital, New Jersey (11) Hartman & Johnson, 05/20/07

Bibliography References Bellingham C. (2003). Time to mobilise expert patients' skills. 1. [Electronic version]. The Pharmaceutical Journal, 270(May), 743-744. Retrieved April 26, 2007, from Ebscohost database. Berland, G.K., Elliott, M.N., Morales, L.S., Algazy, J. I., 2. Kravitz, R.L., Broder, M.S., Kanouse, D. E., Munoz, J.A., Puyol, J.A., Lara, M., Watkins, K.E., Yang, H., & McGlynn, E.A. (2001). Health information on the internet: Accessibility, quality, and readability in English and Spanish. [Electronic version]. Journal of the American Medical Association, 285(20), 2612-2621. Retrieved April 26, 2007, from Ebscohost database. Cassileth BR, Zupkis RV, Sutton-Smith K, March V. (1980). 3. Information and participation preferences among cancer patients [Abstract]. Annals of Internal Medicine, 92(6) 832- 836. Hartman & Johnson, 05/20/07

Bibliography Dervin, B. (2005). Sense making studies. Retrieved April 24, 4. 2007, from http://communication.sbs.ohio-state.edu/sense- making/ Friedman, D.E., Hoffman-Goetz, L. & Arocha, J.F. (2004). 5. Readability of cancer information on the internet. [Electronic version]. Cancer Education, 19(2), 117-122. Retrieved April 26, 2007, from Ebscohost database. Fox, S. (2006). Online health search. Washington, D.C.: Pew 6. Internet & American Life Project. Retrieved April 26, 2007, from http://www.pewinternet.org/ Hartman & Johnson, 05/20/07

Bibliography Hargrave, D. Bartels, U., Lau, L., Esquembre, C. & Bouffet, E. 7. (2003). Quality of childhood brain tumour information on the internet in French language. [Abstract]. Bulletin for Cancer, 90(7) 650-655. Abstract retrieved April 26, 2007, from MEDLINE database Jefford, M., & Tattershall M. Informing and involving cancer 8. patients in their own care.(2002). [Electronic version]. The Lancet Oncology, 3(10), 629-629. from MD Consult database. Kelleher, T., and Miller, B. M. (2006). Organizational blogs 9. and the human voice: Relational strategies and relational outcomes. [Electronic version]. Journal of Computer-Mediated Communication, 11(2), 395-414. Retrieved April 24, 2006 Hartman & Johnson, 05/20/07

Bibliography Lorig, K.R., Sobel, D.S., Stewart, A.L., Brown, B.W., Bandura, 10. A., & Ritter, P. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care, 37(1), 5-14. Madara, E. (2007). In Hartman T. email communication: . 11. Retrieved May 10, 2007, Mills M.E., & Sullivan K. (1999). The importance of 12. information giving for patients newly diagnosed with cancer: A review of the literature. [Electronic version]. Journal of Clinical Nursing, 8(6), 631-642. Retrieved April 24, 2006, from Ebscohost database. Technorati: About us. Retrieved April/24, 2007, from 13. http://technorati.com/about/ Wan, H., Sangupta, M., Velkoff, V.A., & DeBarros, K.A. 14. (2005). 65+ in the United States: 2005. Washington, D.C.: U.S. Government Printing Office. Hartman & Johnson, 05/20/07

A personal weapon in the war on chronic illness

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A personal weapon in the war on chronic illness — Presentation Transcript