Patient Education in Gastroenterology
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Transcript Patient Education in Gastroenterology
Getting to the Point
Using the Internet and other tools to
manage IBD
Prepared for the CCFA Family Conference
March 10th, 2007
Goals
Learn about the resources that are right at
your fingertips on the web
•Discuss ways to talk to your healthcare
provider to gain information
•Discover how to take control of IBD
History of Patient Education
A Proprietary Past
Patients had limited access to educational material
They needed to see their doctor in order to get educated
Physicians were protective of their space
Driven by parochial standards
Driven by lack of effective tools
Driven at times by financial incentives
Patient education was poor
Resulted at times in poor medical care
Patients demand better access to medical
information today
The Traditional Knowledge Pathway
Clinical Problem or Issue
University Based
Government Based
Clinical
Research
Pharma Based
Device Manufacturer
Controlled Studies
Publication
Editorial Board
Distribution
Physicians
Nurses
Other Staff
Patients
History of Patient Education Tools
Personal Communication
Doctor, Nurse, or staff to Patient
Handouts and Brochures
Distributed in the office
May be out of date
Newsletters
Largely done as a marketing tool by Pharmaceutical
Companies, hospitals and large medical practices
Videos
Useful for more complex issues: New Procedures
Minimally used due to logistical issues
Helplines
Promoted by managed care companies
Current Requirements for
Medical Information
Information Quality
Must be from reputable sources, ie: editorial review
Must be timely
Information Distribution
Must reach as many people as we can
Must be accessible at the point of care
Information Performance
Must develop ways of determining success in information
dissemination.
Must ultimately improve clinical outcomes
21st Century Tools
The Internet
Multimedia CDs
Email
Handheld Devices
Integrated Electronic Medical Records
The Internet
Benefits
Now the most powerful knowledge base known to
Mankind
80% of Americans use the Internet
Opened the door to direct patient education access
Patients could access Medical Information on their own
Patients no longer needed physician input
Information is high quality
Information is now timely
There are multiple sources of information
Most information is free
There are now edited sites
The Internet
Problems
Uncontrolled information sources
Inaccurate information:
No editorial review
Only 2% display source and date of information
Only 25% of users routinely check the source
Solicitation and Manipulation: Not always apparent
There is a definite need for regulation
Too much information
Search engines are crammed with sites
Most of them of dubious accuracy
Lack of universal access
Not all patients have Internet access
The elderly may not be able to navigate well
Which way do we go?
Search Engines
Google
Google Scholar
Google Alerts
Yahoo
Microsoft Network
The Internet
Options
Search Engines
Government Websites
Healthcare Websites
GI Societies
Drug Companies
Health Institution Websites
Foundations
Blog Sites
Special Interest Groups
“People don’t go there any
more. It’s too crowded”
Yogi Berra
Government Sites
National Library of Medicine/NIH
Medline
PubMed
Alerts
Food and Drug Administration
Center for Disease Control
Health and Human Services
Healthfinder
National Society for Biotechnical Information
“If you come to a fork in the
road, take it”
Yogi Berra
Healthcare Websites
www.Medscape.com
www.WebMD.com
www.CNN.com/Health
www.uptodate.com
GI Societies
American College of Gastroenterology
ACG
www.gi.org
American Gastroenterology Association
AGA
www.gastro.org
Drug Companies
Centocor
Maker of Remicade
www.livingwithcrohnsdisease.com
www.remicade.com
Proctor and Gamble
Maker of Asacol
www.asacol.com
Johnson and Johnson
Parent company of Centocor
Same as Centocor
Abbott
Humira – Recently approved for Crohn’s Disease
NBJ
Crohnsandme.com
Health Institution Websites
Mayo Clinic
www.mayoclinic.com
John’s Hopkins
www.medicine.net
Physician Practice Websites
www.elgingastro.com
Crohn’s Disease Foundations
CCFA
www.ccfa.org
Foundation for Clinical Research in IBD
www.myibd.org
Blog Sites
Basically like online support groups
Information is not monitored
Information may be inaccurate
Information may have strong negative
bias
Must be used with caution
Example
www.trueguts.com
Healthtalk.com
Special Interest Groups
Pharmaceutical Companies
Insurance Companies
Publishing Companies
Online Bookstores
Vitamin and Herbal Supplement Sites
www.crohnshelp.com
Personal Sites
Ibdanswers.com
Crohnscureforkids.com
Practice Websites
Physician Information
Photos
Mini-CVs
Participating Provider Information
Scheduling Information
Some offer the ability to make appointments online
Office Locations
With PDF map files to download
Patient Satisfaction Surveys
Educational Links
Email
Few offer this
Multimedia CDs
Advantages
Uses
Distributable from the
Patient Education
office by the practice
Illnesses
Personalized to the
Treatments
practice
Procedures
Inexpensive
Practice Information
Captures patients who
CVs
don’t have web access
Maps
Captures patients who
Office Hours
don’t have broadband
Web advice
Redistributable to a
Only sanctioned links
Secondary market
Crohn’s Disease CD
Email
Convenient Tool for Patient Communication
Allows the physician to communicate on his/her time
Improves doctor patient communication
Uses
Mass Dissemination of Information to Patient Groups
Confirmation/Reminders of appointments
Individual Patient Care
Useful for chronic illnesses where frequent
communication is necessary
Problem Issues
Medical-legal
Financial
Logistical
Handheld Devices
Uses
Basic Clinical Information
Electronic Brochures
Practice Guidelines
Advantages
Patients want information at the point of care
Immediately Printable
Updatable
Beamable to others
Electronic Medical Records
Most practices have some form of EMRs
Few are fully adopted
Integration of information from multiple
sources is an issue
Web Based EMR
Patient access via the Internet
Confidentiality Issues
Medical Legal Issues
HIPAA issues
Simple Advice
Know your Internet source!
Must have reputable Editorial Boards
Avoid Commercialism and Site with Advertising
Make sure the information is timely
Look for the last time it was updated
Don’t hesitate to discuss sources with your
physician
Older physicians may not be as Internet savvy
They may be intimidated
Don’t be adversarial
Don’t bring in a 60 page download for him to read
Don’t settle for a doctor who won’t take the time to
discuss your need for information
Conclusions
Patients need accurate timely Medical Information
Patients need to have input into their care
The Internet will continue to expand as an information
tool for health care
Medical Providers need to adapt to the patient’s
needs and desires.
Maybe good things
come to to those who
wait,
but the best things come
to those who
seize
the moment and make it
their own.