finding patient education information resources
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Finding Patient Education Information Resources. Konstantina (Dina) Matsoukas, MLIS Head of Reference & Education Coordinator CUMC - Health Sciences Library [email protected] May 11 th , 2011. Acknowledgements. - PowerPoint PPT PresentationTRANSCRIPT
Finding Patient Education Information Resources
Konstantina (Dina) Matsoukas, MLIS Head of Reference & Education CoordinatorCUMC - Health Sciences [email protected]
May 11th, 2011
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Acknowledgements
•This project has been funded in whole or in part with Federal funds from the National Library of Medicine, National Institutes of Health, Department of Health and Human Services, under Contract No. NO1-LM-6-3501 with New York University.
•This series of training classes was developed by Konstantina (Dina) Matsoukas, Head of Reference and Education Coordinator of the Augustus C. Long Health Sciences Library at Columbia University.
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IFH Training Class Series 2011
Orientation to Health Sciences Information Resources (Feb 23@12pm)
Comprehensive Searching of the Medical Literature (Mar 3@12pm)
Smart Googling for Healthcare Professionals (Mar 10@12pm)
Community Health and Demographic Data Sources (Mar 21@12pm)
Keeping Up with the Medical Literature (Mar 29@12pm)
Overview of Public Health Information Resources (Apr 6@12pm)
Finding Evidence Based Information Resources (Apr 13@12pm)
Expert PubMed/Medline Searching Skills (Apr 29 @12pm)
Finding Patient Education Information Resources (May 11 @12pm)
Searching for Data in Statistical Information Resources (May 17 @12pm)
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Topics covered in this session:
1. To define what constitutes good patient education
resources by reviewing tools for evaluating online health
information
2. To highlight reliable sources of consumer health information
3. To understand patients’ use of the Internet for locating
health information
4. To look at how “Web 2.0” has led to the proliferation of
“user-generated” health information
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Help people make better healthcare decisions
Patient Education Resources should be…
Accurate
Reliable
Factual
Authoritative
Trustworthy
Current
Up-to-date
Reviewed/editorial board
Research-based/not opinion
Unbiased
Non-judgmental
Transparent
Full disclosure of sponsorship
Intended audience = general public
Easy to understand
Low literacy/low numeracy level
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Evaluating the Quality of Health Information
•A User's Guide to Finding and Evaluating Health Information
on the Web
http://www.mlanet.org/resources/userguide.html
•MedlinePlus: Evaluating Health Information
http://www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html
•MedlinePlus Guide to Healthy Web Surfing
http://www.nlm.nih.gov/medlineplus/healthywebsurfing.html
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Content evaluation guidelines
1.Sponsorship
2.Currency
3.Factual information
4.Audience
Source: http://www.mlanet.org/resources/userguide.html
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Mayo Clinic - http://www.mayoclinic.com/health-information/
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Mayo Clinic - http://www.mayoclinic.com/health-information/
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Examples of high quality patient ed resources
•MedlinePlus
•NOAH
•Healthfinder.gov
•TRIPdatabase
•NLM Dug Information Portal
•Nutrition.gov
•Patient Decision Aids search engine (OHRI)
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http://www.nlm.nih.gov/medlineplus/aboutmedlineplus.html
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Drug Information Portal -http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp
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Drug Information Portal -http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp
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LactMed –http://toxnet.nlm.nih.gov/cgi-bin/sis/htmlgen?LACT
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A-Z inventory of Decision Aids
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Browse by health topic
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Lots of wonderful patient ed resources…
But there’s one big
problem…
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http://www.wtae.com/video/27779398/detail.html
Where are people going for health information?
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705249/pdf/471.S1067502709000802.main.pdf
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http://www.washingtonpost.com/wp-dyn/content/article/2009/07/27/AR2009072701912.html
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Who is surfing the Internet and what are they looking at – health information-wise?
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Who is gathering health info online?
•3/4 (74%) of American adults (>18 yrs), have access to the Internet
•8 in 10 Internet users (83%), or about 2/3 of U.S. adults (61%), look online for health info
Source: Pew Internet & American Life Project http://www.pewinternet.org
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Source: http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/02-A-Shifting-Landscape/2-61-of-adults-in-the-US-gather-health-information-online.aspx
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Source: http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/02-A-Shifting-Landscape/2-61-of-adults-in-the-US-gather-health-information-online.aspx
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Chronic Disease and the Internet
http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
Report data set December 2008
Source: Fox, Susannah and Purcell, Kristen. Chronic Disease and the Internet. PEW INTERNET & AMERICAN LIFE PROJECT, Mar 24, 2010, http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
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Patients with chronic disease
•Only 62% of adults living with one or more chronic diseases go online.
•Once online, living with chronic disease is associated with a greater likelihood to access user-generated health content such as blog posts, hospital reviews, doctor reviews, and podcasts.
•More than half (57%) of e-patients living with chronic disease consume user-generated health information.
Source: Fox, Susannah and Purcell, Kristen. Chronic Disease and the Internet. PEW INTERNET & AMERICAN LIFE PROJECT, Mar 24, 2010, http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
(Page 25)
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Of e-patients with chronic disease…
•“37% have read someone else's commentary or experience about health or medical issues on an online news group, website, or blog.
•25% have consulted rankings or reviews online of hospitals or other medical facilities.
•25% have consulted rankings or reviews online of doctors or other providers.
•22% have signed up to receive updates about health or medical issues.
•13% have listened to a podcast about health or medical issues.”
Source: Fox, Susannah and Purcell, Kristen. Chronic Disease and the Internet. PEW INTERNET & AMERICAN LIFE PROJECT, Mar 24, 2010, http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
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Patients 2.0 with chronic disease
•One in five (20%) e-patients living with chronic disease create online health content.
•Once online, having a chronic disease increases the probability that someone will take advantage of social media to share what they know and learn from their peers.
Source: Fox, Susannah and Purcell, Kristen. Chronic Disease and the Internet. PEW INTERNET & AMERICAN LIFE PROJECT, Mar 24, 2010, http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
(Page 26)
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Of e-patients with chronic disease…
•“7% have tagged or categorized online content about health or medical issues.
•7% have posted comments, queries, or information about health or medical matters in an online discussion, listserv, or other online group forum.
•6% have posted a review online of a hospital.
•5% have posted a review online of a doctor.
•4% have shared photos, videos or audio files online about health or medical issues.
•6% have posted comments about health on a blog.”Source: Fox, Susannah and Purcell, Kristen. Chronic Disease and the Internet. PEW INTERNET & AMERICAN LIFE PROJECT, Mar 24, 2010, http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
(Page 26)
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Web 2.0 / Social Media – it’s everywhere…
…but what is it?
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Some ways to describe Web 2.0 / Social Web
Traditional Web
Expert-generated content
Static pages
Not dynamic
Read-only
Passive
One-way flow of info
Slow Internet connections
Indexed by search engines
HTML links & bookmarks
Information dissemination is not user-driven
Web 2.0
User-generated content
Social networking/media
Information sharing
Participatory web
User-centered design
Interoperable/open
Collaborative/collective
Interactive/dynamic
Group/community driven
More personalized experience
Communication tool
Broadband, fast Internet
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Web 2.0 in one word…
Sharing
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What are patients sharing?
•Personal experience with illness/healthcare
•Noteworthy clinical trial research findings
•Information on new therapies
•Drug side-effect & drug effectiveness info
•Personal health data
– Symptoms
– Treatment regiments
– Disease progression details
•Etc.
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How are providers getting patients involved in sharing?
•Shared decision-making tools
•Full access to electronic medical records
•Personal health management tools
•“Expert patient” experience/wisdom
•Connecting patients with shared illness
•Involving patients in setting research priorities
•Etc.
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Let’s have a look…
…at some sample sites with social media elements that your patients may be going to for their “user generated” online
health information.
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http://www.healthtalkonline.org/myflv.swf?myFlv=introductionVideos/John Snow Edited_NEW.flv
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http://lo-wiki.acor.org/index.php/Main_Page
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Example of “Crowd-sourced / patient-driven research”http://www.patientslikeme.com
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http://www.patientslikeme.com/about
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Eg. of “crowd-sourced research” - http://www.curetogether.com/
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http://curetogether.com/blog/about/
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http://www.invo.org.uk
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Questions?
Konstantina (Dina) Matsoukas, MLIS Head of Reference & Education CoordinatorCUMC - Health Sciences Librarytel. [email protected]
Reference Desk: 212-305-3692email: [email protected]
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References
Social Networks: a Lifeline for the Chronically Ill, by Claire Cain Miller, published: March 24, 2010, NYTimes
http://www.nytimes.com/2010/03/25/technology/25disable.html
Chronic Disease and the Internet, by Susannah Fox and Kristen Purcell. Pew Internet & American Life Project, Mar 24, 2010
http://www.pewinternet.org/Reports/2010/Chronic-Disease.aspx
When Patients Share Medical Data Online, by Bonnie Rochman, published Feb. 8, 2010, TIMEhttp://www.time.com/time/magazine/article/0,9171,1957460,00.html
e-Patients: How they can help us heal healthcare, by Tom Ferguson, MD (March 2007)http://acor.org/epatientswiki/index.php/Main_Page