1. Role of Patients in Getting Communities Connected
Linda F. Golodner, President
National Consumers League
June 27, 2005

2. Today’s Presentation
What do consumers want when it comes to electronic healthcare?
What do they assume?
Who do they trust?
What are their concerns?

3. Today’s Presentation
What is happening at the national and local levels to get consumer buy-in?
What should occur nationally?
What should be going on at the local and regional levels?

4. National Consumers League
Consumer research, education and advocacy since 1899
Network of consumer/patient groups throughout U. S. and abroad
Mission: economic and social justice for consumers and workers

5. NCL – Consumers and IT Internet Fraud Watch – 9 years SOS Rx
Trends in consumer use of technology
Privacy
Security
SOS Rx
eprescribing
Personal medication record
National Patient Safety Foundation
Patient Safety Institute

6. National Consumers League Programs 2005
Healthcare
Safety
SOS Rx
sosrx.org
Consumers in control
Risk communication
Fraud – fraud.org
ID Theft
Internet Fraud
Fraud Against Seniors
Counterfeit, including drugs and devices
Food Safety
Bacteria like viruses change
Technology to make processed food safer
Corporate Social Responsibility
Child Labor
stopchildlabor.org
Sweatshops
International Standards
LifeSmarts for teenagers
lifesmarts.org

7. What do consumers want?
“Health IT is not software and computers – it is physicians making better treatment decisions; nurses and pharmacists delivering safer care; and consumers making better choices among treatment options.”
--David Brailer

8. Every consumer is unique
Access to information
About care
Their own records
Improved health, healthcare delivery
Environment of trust
Privacy
Security
Confidentiality
Know whose got your information

9. Health Information RAND report in March: Harris Interactive
In last 12 months, 60% have searched to help make treatment decisions
More than half: desire to make final treatment decisions for themselves or a family member.
Harris Interactive
Support electronic medical records
Improve quality (76%)
Reduce costs (73%)
Decrease medical errors (62%)

10. Privacy survey
NCL: Thinking about the privacy of all your personal information, how concerned are you that information about your health and medical information is protected?
Concerned – 83%
Not concerned – 17%

11. NCL Survey
Thinking of the privacy…concerned that your Social Security number is protected?
Concerned – 93%
Not concerned – 7%
Of all your personal information, will it be more threatened in 2020?
Yes – 75%

12. Who do patients trust with their information?
NCL: When it comes to making the right decisions about your health care, how much do you trust?

13. How much do you trust?

14. How do we move forward?
Much talk of “selling” consumers on healthcare IT
Little visibility of efforts to educate

15. Call to Action -- National
Appoint at least 3 consumer/patient representatives to American Health Information Community
Direct all AHIC members to review and respond to the set of consumer principles for electronic healthcare submitted by the Markle Foundation/Connecting for Health

16. Call to Action – National
3. Require all future grantees to incorporate a plan for consumer involvement into their research grant applications
4. Commission research with patients and consumers to specifically examine how process changes stimulated by electronic healthcare will impact the care delivery experience

17. Call to Action -- National
Educate consumers about their rights and responsibilities and provide more funding for these efforts
Establish a network of consumer organizations involved in RHIO efforts to encourage collaboration among consumer/patient representatives

18. Call to Action – Local/Regional
RHIOs should have an explicit plan for consumer/patient engagement
Consumer representatives should receive guidance and training on procedures and briefings on technical issues in order to make their contribution effective and meaningful

19. Call to Action – Local/Regional
Community-wide education campaign to inform consumers about electronic healthcare generally, inviting their involvement
Survey patient/community members for attitudes, perceptions and needs. Results will vary by region – cannot rely solely on national data

20. Call to Action – Local/Regional
Consumer/patient advocates integral part of governance and advisory structure
Public, transparent, accountable system

21. Linda Golodner National Consumers League lindag@nclnet.org www.nclnet.org 202-835-3323