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Consumer Engagement in Heath IT in NYKatie O’NeillLegal 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 Initiatives
Policy Education Advocacy
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
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 CouncilMembership 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