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

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

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

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?

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!

Internet usage for health related questions (in millions)

The docs are weary…. Report from Forrester Research (1999): (60 interviews with US and Canadian docs) Do not want to e-mail 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:

What does the government say? National Library of Medicine PubMed MEDLINEplus Long Range Plan 2000-2005 : 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.

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

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

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.

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.

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

Recommended Sites: General Cancer American Cancer Society site www.cancer.org CancerNet --National Cancer Institute http://cancernet.nci.nih.gov MEDLINEplus -- Consumer health web-directory maintained by NLM http://www.nlm.nih.gov/medlineplus/

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

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