1. Oncology Update
June 3rd, 2000
Keeping Up With the Well-Informed Patient: locating cancer information on the Internet
Ruti Volk, M.S.I.
Program Coordinator
Patient Education Resource Center
Comprehensive Cancer Center
University of Michigan

2. Outline: Information needs of cancer patients
Attitudes regarding health information on the net
Evaluating Internet resources
Recommended sites

3. Information needs of cancer patients Top Topics at PERC July 99 - April 2000 (by number of interactions)

4. Examples of questions:
My husband was just diagnosed with cancer - I want to know how to “be a good wife for him”
When should I tell my kids? How should I tell the kids?
What do I do if I have to take an extended leave from work? Can I lose my job?
This is the toughest thing I’ve had to face in my life? How do I get through it?

5. Online population: Harris Poll, December 22, 1999
Online population in 1999 is 115 million; 56% of all adults
In 1995, the online population was 9%
It’s a 600% increase!

6. Internet usage for health related questions (in millions)

7. The docs are weary…. Report from Forrester Research (1999):
(60 interviews with US and Canadian docs)
Do not want to patients without getting paid
Concerned about security of medical records transferred online
Do not trust the quality of medical information on the web
This research was requested by health care executives who wanted to find out how will doctors react to integration of information technology to clinical practice…it found that docs feel very uncomfortable about using the internet in clinical practice…they had three major complaints:

8. What does the government say?
National Library of Medicine
PubMed
MEDLINEplus
Long Range Plan : Highest priority new initiatives:
#1 priority: Health information to the public
National Cancer Institute
CancerNet
“translation” of PDQ to plain English
Our government, on the other hand, is investing millions of dollars for distribution of consumer health information on the web.
NLM - traditionally focused on services for health professionals has spent millions on services to the public since the emergance of the internet:
public access to MEDLINE
MEDLINEplus
and not funded projects in 49 public and academic libraries for consumer health
NCI - translated PDQ statements to english - created a huge website for the public with access to clinical-trials database, cancerlit and PDQ statements.

9. In summary: It’s a new world out there...
Patients are looking for health related information online
The government promotes publishing and seeking consumer-health information on the web
The medical community’s role: guidance and direction

10. Watch out... It’s very easy to publish information on the internet
Information may be biased
Hard to differentiate between content and advertisement
It’s a free world: no quality control

11. Evaluating Internet information: How?
Check URL
.com
.org
.edu
.gov
Read the “about us” “who are we” section
Stick by government or university run sites. Medical associations and hospitals are also credible sources.

12. Evaluating Internet information: How? - additional considerations:
Price
Timeliness: when was the information last revised
Look and feel, ease of use and navigation
HON (Health on the Net Foundation ) - self-regulation by content providers.

13. HON Principles: Authority Complementary Confidentiality Attribution
Justifiability
Transparency of authorship
Transparency of sponsorship
Honesty in advertising and editorial policy

14. Recommended Sites: General Cancer
American Cancer Society site
CancerNet --National Cancer Institute
MEDLINEplus -- Consumer health web-directory maintained by NLM

15. Commercial Sites: CancerSource www.cancersource.com
Patient ed. materials in various levels: basic, intermediate, advanced
Medical editorial board - authoritative external sources
Revenue from ads

16. Commercial Sites: cancereducation www.cancereducation.com Medclips
Patient and family section
Health professional section
Medclips
Collaboration with cancer organizations
Medical advisors (?)
Revenue from ads