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

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?

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?

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

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

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

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

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

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%)

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%

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%

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?

How much do you trust?

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

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

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

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

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

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

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

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