Consumer Engagement in Heath IT in NY Katie O’Neill Legal Action Center Lygeia Ricciardi Clear Voice Consulting, LLC

Information Technology has Transformed… Banking Shopping News Health care (behind, but catching up) …in part by engaging and empowering consumers

Engaging Consumers in Their Health Care = Stronger partnerships between providers and patients Richer knowledge (traditional and new data sources) for diagnoses, treatment, research, public health, quality measurement, etc. Better quality, more efficient care Consumers engaging in healthier behaviors

Current Barriers Records largely in paper form Requires contacting multiple parties/paying fees Even when records are electronic, no place to which New Yorkers can have them easily sent and stored securely Legal system needs updating—need to evolve to provide consumers with meaningful right to have access to their personal health info and control its use

New York State’s Consumer Engagement Strategy Policy Education Advocacy Technology

New York State’s Consumer Engagement Initiatives PolicyEducationAdvocacy SCP Connecting NYers Subgroup Consumer Access Policy Paper HISPC Materials Consumer Advisory Council and Consumer Network Technology

NY’s Consumer Engagement Team NYS DOH NYeC Consumer Advocacy Organizations/Consultants RHIO Representatives

Consumer Access Policy Recommendations (Policy) Closely linked to Technical Implementation Advisory Group – experts from within NY and beyond Identifies barriers to consumer access and proposes solutions Feeds into Policy and Operations Council process

Connecting New Yorkers and Clinicians Workgroup (Technology) One of the 4 Clinical Priorities Workgroups Chaired by Christina Galanis and Irene Koch Emphasis on HEAL 5 consumer use case and other efforts to link consumers to providers and their own health information

HISPC (Education) Federal grant program focused on privacy and security in health information exchange (HIE) implementation at the state level Includes 40 plus states This is NY’s 3rd round of participation (including consent policy development) Goals of education work in this round: Develop educational materials to prepare consumers in NY to make informed consent decisions…and to support other states

For Example...

Advocacy Build capacity within consumer and health advocacy organizations…. Develop & implement new statutory framework to provide affirmative right to and control over personal health information in an affordable and timely manner, including strong consumer protection framework

Health IT Consumer Advisory Council & Consumer Network Cuts across Advocacy, Policy, Education – and influences Technical Implementation Cornerstone: Consent White Paper vision and strategies (HISPC Phase II)

Key White Paper Concepts: Consumer Education, Engagement & Advocacy “Establishment of public trust with respect to the privacy and security of health information: single most important goal of NY’s health IT investment program.” “Essential cornerstone of NY’s health IT policy is to ensure that consumers are appropriately educated about how their health information can be shared and to provide consumers with the informed opportunity to decide whether or not they desire to have their health information accessible via the SHIN-NY governed by RHIOs.”

Key White Paper Concepts: Consumer Education, Engagement & Advocacy Goals: Enable consumers to make informed decisions regarding collection, storage and exchange of their health information Build consumer trust as key to buy-in to SHYN-NY and RHIOs

How: Our consumer engagement and education initiative Craft public education and consumer engagement initiative Include development of consumer-centric materials geared toward ensuring consumers understand how SHIN-NY and RHIOs change way their health information is accessed and potential risks and benefits Develop and approve consumer education standards to ensure that consumers are aware of what they are consenting to and to whom their personal health information is available Require RHIOs to appoint at least one consumer representative to RHIO Board

Consumer engagement and education initiative activities Identify, organize and engage consumer stakeholders, including health consumers and consumer advocacy organizations, as participants in Health IT Consumer Advocacy Coalition to play key role in developing and implementing health IT initiatives in New York Conduct consumer-stakeholder education, support and communication activities to support establishment and build capacity of Coalition participants and other HIT/HIE consumer stakeholders to play key role in developing and implementing HIT and HIE initiatives in New York With public/private partners, organize and lead Coalition’s education and policy development efforts

Health IT Consumer Advisory Council and Coalition/Network Identify and recruit leading consumer and health advocacy groups in NY to participate in health IT initiatives, policy and practice development Recruit and launch Consumer Advisory Council to help plan and guide consumer engagement and education activities Develop and grow statewide Health IT Consumer Advocacy Coalition/Network

Consumer Advisory Council Vision for CAC: Develop public education strategy Guide consumer education activities Advocate on behalf of consumer interests Build capacity of consumer and health advocacy organizations across NYS to support health IT

CAC Mission (draft) Educate and engage New Yorkers about the potential for e-health to improve access to care and health care quality in the state, while safeguarding individual privacy Develop set of guiding principles to assist policymakers, consumer and health advocacy organizations and providers to develop policies and practices related to e-health initiatives to promote progress, as well as safeguard confidentiality and consumer autonomy

CAC Mission (draft) Develop a network of organizations throughout New York State to participate in ongoing education and outreach efforts Create website to act as a clearinghouse for materials and news: ehealth4NY Convene meetings & conferences over next 2 years to create and foster a consumer movement for e-health.

Consumer Advisory Council Membership Groups representing consumers focusing on: Specific health conditions HIV/AIDS Alcohol/drug use Reproductive health/family planning Mental health Cancer (breast cancer) Diabetes and...

Consumer Advisory Council membership, cont. More general health/consumer advocacy organizations & coalitions American Association of People with Disabilities Center for Independence of the Disabled Community Service Society AARP – American Association of Retired Persons Primary Care Coalition (NY Chapter, American College of Physicians)

Consumer Advisory Council and Coalition/Network Activities Consultants leading these consumer engagement/education/advocacy efforts: Legal Action Center with Janlori Goldman Now recruiting and planning inaugural meeting of Consumer Advisory Council (within month) With CAC, will finalize Mission Statement and Working Principles to guide consumer engagement activities

Activities... Information-sharing:  Identifying, developing database, list serve of groups invited to to participate in statewide consumer network  Planning launch of website – ehealth4NY – within month  Compiling information, resources, news to share on website and through list serves

Activities... Invite & engage Consumer Advisory Council and Health IT Consumer Network participants in activities, meetings, events relating to health IT initiatives statewide, through 2008 and 2009, to  Raise awareness, educate, build capacity, enable and empower consumer stakeholders to inform development of health IT policies, practices at all levels  Build and strengthen liaisons among all public/private partners and stakeholders