Getting to the Point Using the Internet and other tools to manage IBD Prepared for the CCFA Family Conference March 10 th, 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 Clinical Research Controlled Studies University Based Pharma Based Device Manufacturer Government Based Editorial Board Publication Physicians Nurses Patients Distribution Other Staff

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 Personal Communication Doctor, Nurse, or staff to Patient  Handouts and Brochures Distributed in the office May be out of date  Newsletters Largely done as a marketing tool by Pharmaceutical Companies, hospitals and large medical practices  Videos Useful for more complex issues: New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

21 st Century Tools  The Internet  Multimedia CDs   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 Google Scholar Google Alerts  Yahoo Yahoo  Microsoft Network 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 Alerts  Food and Drug Administration Food and Drug Administration  Center for Disease Control Center for Disease Control  Health and Human Services Healthfinder  National Society for Biotechnical Information National Society for Biotechnical Information

“If you come to a fork in the road, take it” Yogi Berra

Healthcare Websites    

GI Societies  American College of Gastroenterology ACG  American Gastroenterology Association AGA

Drug Companies  Centocor Maker of Remicade  Proctor and Gamble Maker of Asacol  Johnson and Johnson Parent company of Centocor Same as Centocor  Abbott Abbott Humira – Recently approved for Crohn’s Disease  NBJ Crohnsandme.com

Health Institution Websites  Mayo Clinic  John’s Hopkins  Physician Practice Websites

Crohn’s Disease Foundations  CCFA  Foundation for Clinical Research in IBD

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 Healthtalk.com

Special Interest Groups  Pharmaceutical Companies  Insurance Companies  Publishing Companies Online Bookstores  Vitamin and Herbal Supplement Sites  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  Few offer this

Multimedia CDs  Uses Patient Education  Illnesses  Treatments  Procedures Practice Information  CVs  Maps  Office Hours Web advice  Only sanctioned links  Advantages Distributable from the office by the practice Personalized to the practice Inexpensive Captures patients who don’t have web access Captures patients who don’t have broadband Redistributable to a Secondary market Crohn’s Disease CD

 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.