REPORT FROM CONSUMERS STAKEHOLDER GROUP

1. REPORT FROM CONSUMERS STAKEHOLDER GROUP Linda F. Golodner, President National Consumers League

2. STAKEHOLDER RESPONSIBILITIES • Consumer participation -- personal • Assuming responsibility for your own health • Understand and use the portals and tools that are available • Control over access to record and ownership of record • Consumer participation – development of NHII • Involved at the beginning – policy and standards • “At the table” – governance structure • Advocacy groups “plus” – community-based grassroots groups • Promote consumer education about role of NHII • Why it is valuable for consumer health – define the need • Create a demand and help consumers take control • Voice consumer expectations through “bill of rights” • Ask consumers what would be the incentives to embrace IT

3. STAKEHOLDER RESPONSIBILITIES • One size does not fit all – • Not all consumers use technology • Diverse population with different needs • Choices must be available • Build a partnership with health professionals • Understand rights, needs and responsibilities of each other • Choose providers based on IT adoption/performance • Condition of grant funding should be that consumers/patients are involved in the process and governance of organization • Begin with Initiative as a model

4. STAKEHOLDER PRIORITIES • Address issues related to privacy/security/confidentiality • Consumer control of access to information • Educate consumers about role, benefits, importance of NHII to their health and the health of their families • Consumer participation in all steps of the development and throughout process • An important part of healthcare provider/patient relationship • User friendly, simple to use and understand • Consumer must have confidence