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 May be out of date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.