Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus

The Impact of Technology on Searching for Health Information:Searching for Health Information: Online Communities of Support

Danielle De Jager‐Loftus, MFA, MSLISAsst. Professor, Technology/Medical Librarian

The University of South Dakota, University LibrariesI.D. Weeks and Lommen Health Sciences Libraries

Session GoalsSession Goals

• Health seeking behaviors• Health seeking behaviors–Online communities of support

–Technology

• Providing consumer health information / reference tipsinformation / reference tips

• Questions

Current Electronic Health InfluencesCurrent Electronic Health Influences

• 40% of MD’s use at least one of• 40% of MD s use at least one of the these tools:

electronic prescribing

electronic medical recordselectronic medical records

remote disease monitoring

80% f ll i h f• 80% of all patients search for health information online

www.pewinternet.org/reports/index.asp

Consumer Health Then & Now…Consumer Health Then & Now…

• 1972 – Patient Bill of Rightsg

• 2002 – Pew Internet and American Life

“ f ”• 2006 – “Googling for a diagnosis” [BMJ]

• 2006 – Pew Internet and American Life

Looking for InformationLooking for Information

• Pew Internet & American Life survey said the topPew Internet & American Life survey said the top four health topics searched online were:

• specific diseases; • specific medical treatment;specific medical treatment;

• diet, nutrition and nutritional supplements;

d i fit• and exercise or fitness.

Health Seeker ProfileHealth Seeker Profile

• 72 % of Females as compared to 51%• 72 % of Females as compared to 51% of Males

• 71% of those between 50 and 64 years of age as compared to 53% of those between 18 and 29 years of age *There are no significant differences in theseare no significant differences in these percentages when compared by ethnicityethnicity.

www.pewinternet.org/reports/index.asp

Harris PollHarris Poll

www.harrisinteractive.com

How do we use the Internet ?How do we use the Internet ?

• Growing numbers of internet users look forGrowing numbers of internet users look for health information– helps them have better conversations with their– helps them have better conversations with their doctors

• Big impact on the knowledge of patients• Big impact on the knowledge of patients

• The questions they ask their doctors

• Is therefore changing the doctor‐patient relationship and the practice of medicine.

www.harrisinteractive.com

Google?Google?

• The sight of clinic patients clutching i t t i t t fill d tinternet print‐outs fills some doctors with dread

Murray E, Lo B, Pollack L, Donelan K, Catania J, White M, et al. The impact of health information on the internet on the physician‐patient relationship: patient perceptions. Arch Intern Med. 2003;163:1727‐34

Googling for a DiagnosisGoogling for a Diagnosis

•Article was widely reported in the lay press

•Doctors/ patients could magically become diagnosticians simply by using web search engines?

Tang H, Ng JHK. Googling for a diagnosis—use of Google as a diagnostic aid: internet based study. BMJ. (published 10 November 2006).

Googling for a DiagnosisGoogling for a Diagnosis

• Study of ‘mystery illnesses’ in New England Journal of Medicine case records

• Web search used by experts to ‘fish’ for information on a rare clinical problem pbefore confirming by more rigorous search methods

Tang H, Ng JHK. Googling for a diagnosis—use of Google as a diagnostic aid: internet based study. BMJ. (published 10 November 2006)

Google?Google?

U d i bl th t b th d t d• Undeniable that both doctors and patients use the internet as an pimportant source of health i f iinformation

Cullen RJ. In search of evidence: family practitioners’ use of the Internet for clinical y pinformation. J Med Libr Assoc 2002;90:370‐379

Diaz JA, Griffith RA, Ng JJ, Reinert SE, Friedmann PD, Moulton AW. Patients‘ use of the Internet for medical information. J Gen Intern Med. 2002;17:180‐5

Googling for HealthGoogling for Health

• A recent study showed that almost 19%A recent study showed that almost 19% percent of youth surveyed had used a general word search on Google Wikipedia or Yahoo toword search on Google, Wikipedia or Yahoo to find information about their health concerns.

• A total of about 3 percent used Health.com, Plannedparenthood.com or Mayoclinic.com.

Moreno, MA; parks, MR; Zimmerman, FJ; Brito, TE; Christakis, DA. (2009) Display of Health Risk Behaviors on MySpace by Adolescents: Prevalence and Associations. Arch Pediatric Adolesc Med., 163, 37‐34

Googling for HealthGoogling for Health

• Teens don’t really know where to• Teens don t really know where to look or whom to ask online

• Neither do adults – the 2006 Pew Internet and American Life report announced the same resultsannounced the same results


• The authors of the 2006 Pew Internet and American Life report point to the need for onlinepoint to the need for online health resources with offline referrals or communities that incorporate peer adviceincorporate peer advice


Information Age Insight:Information Age Insight:

"Medical knowledge is a social h i hprocess: The conversations that

occur around artifactual data are falways more important than the data themselves "data themselves.

Lester, J. Director of Information Technology, Department of Neurology, Massachusetts General Hospital.

Social NetworkingSocial Networking• What is social networking? at s soc a et o g?

• A social networking Web site provides a virtual community for people interested invirtual community for people interested in a particular subject or just to "hang out" together. (PC Magazine) g ( g )

• MySpace and Facebook are online community websites that allow friends andcommunity websites that allow friends and family to communicate.

Internet Support CommunitiesInternet Support Communities

• These online groups each devoted to a singleThese online groups, each devoted to a single medical topic (e.g., breast cancer or depression) usually communicate via postingsdepression), usually communicate via postings on Web‐based forums or electronic mailing listslists.

• Participants share their thoughts, feelings, and experiences and ask and reply to questionsexperiences, and ask and reply to questions.

Ferguson T. Found on the net: What e‐Patients do line: A tentative taxonomy. The Ferguson Report, No. 9, September 2002 . www.fergusonreport.com/articles/fr00804.htm


• They exchange information on medical studies d li i l i l diand clinical trials, discuss current treatment

options

• They recommend treatment centers and professionals with special expertise in the shared condition.

Ferguson T. Found on the net: What e‐Patients do line: A tentative taxonomy. The Ferguson Report, No. 9, September 2002 . www.fergusonreport.com/articles/fr00804.htm


• As with “Googling for Diagnoses” some• As with Googling for Diagnoses , some researchers express concern about

t ti l f i t i f f ddi hpotential for inaccurate info or faddish treatment

• Researchers found there were self‐correcting mechanisms inherent in manycorrecting mechanisms inherent in many online support groups

Feenberg, A. L., Licht, J. M., Kane, K. P., Moran, K. and Smith, R. A. The online patient meeting. J Neurol Sci. 1996;139:129–131.


• Over 85% of members on a cancer f t t d t t ith thforum stated contact with others who have undergone similar experiences was the most beneficial aspect of the forumaspect of the forum

Fernsler J. I., Manchester L. J. Evaluation of a computer‐based cancer support network. Cancer practice 1997;5(1):46‐51.

Wh t b t f•What about consumers of health info that don’t havehealth info that don t have a wireline device?a wireline device?

• Studies mentioned areStudies mentioned are desktop access…

Digital DivideDigital Divide• Term has been used to describe decreased access to information and communication technologies (ICT)communication technologies (ICT), particularly the Internet

f i l d th i i iti– for racial and ethnic minorities

– persons with disabilities

l l– rural populations

– those with low socioeconomic status

Chang Betty L, Bakken Suzanne, Brown S Scott, Houston Thomas K, Kreps Gary L, Kukafka Rita, Safran Charles, Stavri P Zoe. Bridging the digital divide: reaching vulnerable populations. J Am Med Inform Assoc. 2004;11(6):448–57

Digital DivideDigital Divide

• Falling Through the Net: Toward Digital Inclusion reported that Hispanics andInclusion reported that Hispanics and blacks are significantly less likely than the ti l t t tnational average to own a computer, to

have Internet access, and to access the Internet at home

Falling Through the Net: Toward Digital Inclusion—A Report on Americans' Access to Technology Tools. Washington, DC: National Telecommunications and Information Administration, 2000.


• Internet access is increasing at all income levels, but continues to be significantly higherlevels, but continues to be significantly higher for those with higher incomes.

• For example 89% of households earning more• For example, 89% of households earning more than $75,000 have Internet access at home compared with 55% with household incomescompared with 55% with household incomes less than $30,000.

Horrigan J. Pew Internet Project Data Memo. Washington, DC: Pew Internet and American Life, 2004.


• Urban use of the Internet i b hi h h hcontinues to be higher than that

in rural areas (65% vs. 48%).in rural areas (65% vs. 48%).

Horrigan J. Pew Internet Project Data Memo. Washington, DC: Pew Internet and American Life, 2004.


•The number of “wired” seniors is i i i h % i hincreasing, with 22% using the Internet, and 66% of “wired”Internet, and 66% of wired seniors have used the Internet to search for health information

Fox S. Older Americans and the Internet. Washington, DC: Pew Internet and American Life, 2004

DisparitiesDisparities

•Elimination of health disparities

a major goal for next decade identified in Healthy People 2010identified in Healthy People 2010

Office of Disease Prevention and Health Promotion. Healthy People 2010: Understanding and Improving Health. Washington, DC: Office of Disease Prevention and Health Promotion (ODPHP), United States Department of Health and Human Services, 2000.

DisparitiesDisparities

• Advisory Commission on Consumer Protection and Quality in the Health Care Industry suggested that “telemedicine and similar innovations … should be assessed as approaches for improving the access to care of those facing … barriers to appropriate care.”

Advisory Commission on Consumer Protection and Quality in the Health Care Industry. Quality First: Better Health Care for All Americans. Available at: http://www.hcqualitycommission.gov/final.

Mobile TechnologiesMobile Technologies

• At least 62% of all adults owned a mobile phone in 2001 pand by 2003, 66% of all U.S. households owned mobile phones.

A ith ll tl t h l i th l th f• As with all costly technologies, there looms the concern of a digital divide.

• Low‐income families are more likely to have no or ysuboptimal cell phones.

• However, even among families of underrepresented minorities, the penetration rate of this technology is high.

Sax U, Kohane I, Mandl KD. Wireless technology infrastructures for authentication of patients: PKI that rings. J Am Med Inform Assoc 2005;12:(3):263‐268May‐Jun.

Mobile TechnologiesMobile Technologies

• Mobile/cordless/DECT phone (Digital• Mobile/cordless/DECT phone (Digital Enhanced Cordless Technology)

WI FI/WLAN ( i l l l t k)• WI‐FI/WLAN (wireless local area network)

• WiMAX (Worldwide Inter‐operability for Microwave Access)

• Handheld PCs, PDAs, messagingHandheld PCs, PDAs, messaging devices, electronic organizers and smart phonessmart phones

Smart Phone EmulatorEmulator

htt // / d ht lhttp://www.yospace.com/spedemo.html

•Developer edition

•Test your Webpages

Mobile RevolutionMobile Revolution

• Over 850 million/about 14 percent of the• Over 850 million/about 14 percent of the world population owns one or more

bil hmobile phones

• Mobile Internet and wireless technologies have expanded current Internet sales into more immediate andInternet sales into more immediate and personalized mobile environments

Siau, K., & Shen, Z. (2006, June). Mobile healthcare informatics. Medical Informatics & the Internet in Medicine, 31(2), 89‐99.

The Mobile DifferenceThe Mobile Difference

• “Mobile connectivity is now a powerfulMobile connectivity is now a powerful differentiator among technology users. Those who plug into the information andwho plug into the information and communications world while on‐the‐go are notably more active in many facets of digitalnotably more active in many facets of digital life than those who use wires to jack into the internet and the 14% of Americans who areinternet and the 14% of Americans who are off the grid entirely.”

Horrigan J. Technology User Types, Mobile, Digital Divide. Washington, DC: Pew Internet and American Life, Mar 25, 2009

Realities of Health Care TodayRealities of Health Care Today

• Patients are now asked to make• Patients are now asked to make decisions about their own disease process.

• Most info consumers do not have the• Most info consumers do not have the tools to make these kinds of decisions

• Libraries can help!• Libraries can help!

ScenarioScenario• A familiar woman approaches you while youA familiar woman approaches you while you are working on the reference desk at a public library. She tells you that her mercury fillings have been poisoning her and then hands you a article she found on the web. She says that h i i d id h h hshe is trying to decide whether to remove her fillings and wants some more information to help her make up her mind She finishes byhelp her make up her mind. She finishes by mentioning that the “other librarian” was no help at allhelp at all.

QuestionsQuestions

• What are some issues to consider?

• How would you behave in this situation? y

• What kind of evidence would you use to answer this question?answer this question?

• What if this “frequent flyer” doesn’t like the information you find? What if she comesinformation you find? What if she comes back?

What are some good sources?What are some good sources?

• Journal of the American Dental AssociationJournal of the American Dental Association, “Dental Amalgam FAQs”

• U.S. Food and Drug Administration, CDRH Consumer Information “Questions andConsumer Information, Questions and Answers on Dental Amalgam”:

htt // fd / d h/ / l ht lhttp://www.fda.gov/cdrh/consumer/amalgams.html

As Info ProfessionalsAs Info ProfessionalsHow Can/Should We

Provide Help?

•General Tips for Reference InterviewsInterviews


Provide Help?

http://www.nlm.nih.gov/services/guide.html

• Librarians can't answer questions about individual medical cases or offer medical advice, because we are not doctors, nurses, or pharmacists. We can help you find health information resources.

Challenges of the reference interview h f h l h fin the context of health information

• Not being familiar with the resources

• Medical terminology• Medical terminology

• Knowing how much to ask

• Using open ended questions

• Being aware of body languageg y g g

• Others?


Provide Help?

• Put together web‐based and gprint directories of a FEWconsumer health resources


Provide Help?

•Practice compassionatePractice compassionate reference: Listen, observe, empathize


Provide Help?

•Keep information•Keep information confidentialconfidential


Provide Help?

K l i i t•Keep personal opinions to yourselfyourself

As Info ProfessionalsAs Info Professionals How Can/Should We

Provide Help?

•Anticipate commonAnticipate common concerns or worries (i.e., (financial repercussions, physician reprimand)


Provide Help?

• Teach basics of sound internet searching


Provide Help?

•Promote

The “Best” Sources of Consumer Health Information

• Are written for a consumer audience• Are written for a consumer audience (grade 6 to 8 reading level)

• Are written by medical authorities

• Include references to evidence‐based• Include references to evidence‐based sources

The “Best” Sources of Consumer Health Information

• Have a review board

• Are updated regularly

D ’t i l d d ti t• Don’t include advertisements

Questions to ask when picking a Q p gresource

• Is the information age‐appropriate?

• Is the information culturally appropriate?• Is the information culturally appropriate?

• Is the information understandable to the t ?patron?

• Does the information answer the patron’s questions?

• Is the information accessible? i.e., Can you increase the font size?

Consumer Health ResourcesConsumer Health Resources

•AboutKidsHealth: http://www.aboutkidshealth.ca/

•NIHSeniorHealth: http://nihseniorhealth gov/•NIHSeniorHealth: http://nihseniorhealth.gov/

•Asian American Health (Includes materials in Chinese, Filipino and Japanese): http://asianamericanhealth.nlm.nih.gov/

•General Consumer Health ‐MedlinePlus: http://medlineplus.gov/http://medlineplus.gov/

Subscription Clinical Databases with Patient Handouts

•ACP PIER •MD Consult

•Micromedex

•UpToDatep

CollectionsCollections

• How do I begin collecting consumer h l h i l ?health materials?

Collections Considerations

• “Consumer health” not used as LC subject heading. (hint: try your medical term followed by “popular works”) i.e., Dentistry–Popular works.

• Order books for a “general audience”

Collections Considerations

• Base collections decisions on patron requests and local demographic information –Ask for patron feedback

• Hand‐pick –check currency, authority, references, publisher, etc...p

• Consider audio/visual materials as well as printprint

As Info ProfessionalsAs Info Professionals

• ChallengeChallenge

ControlledV b l

Reference Interview

MARCMeSH Thesauri

Vocabulary

Concept CodesInfo Literacy

MeSH Thesauri

Info LiteracyClassification

VerificationUDC

BooleanVerification

Acquisitions

Doc TypesNegotiation

BlWeb 2.0 Screencasts

AJAX

XML FRBR

Blogs

CMSPerl

XML FRBR

XHTML

HTMLCSS

Perl

MODSRSS

JavaScriptWikis

MODS

PodCastsLibrary 2.0

PodCasts

SecondLife TwitterSecondLife Twitter

As Info ProfessionalsAs Info Professionals

• ChallengeChallenge

• Keeping Up with TechnologyKeeping Up with Technology

• Integrating All for Our UsersIntegrating All for Our Users

QuestionsQuestions…

• and Thanks!and Thanks!

dl f d d• [email protected]

• Blog: http://blogs.usd.edu/2library/

• Slideshare: http://www slideshare net/dloftusSlideshare: http://www.slideshare.net/dloftus

Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus

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