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

2. Information Technology has Transformed…
Banking
Shopping
News
Health care (behind, but catching up)
…in part by engaging and empowering consumers
Banking – online, use ATMs anywhere
Shopping – research buy from your couch at home; sell via ebay/amazon
Not just access to info, but people generating their own info.
Most evident in news: more than 15.5 million active blogs;
US Internet users viewed more than 10 BILLION videos in the month of February. (Up 66% from previous year). 96% of those on YouTube.

3. 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
Traditional sources – data from clinical visits – labs, medications, record of conditions
New sources – diet, exercise, over time we’ll see more devices that monitor health data (heart rate) and upload it to a device like a PHR
Heart disease, stroke, and cancer – the leading causes of death in the US> each has potentially strong behavioral elements – exercise, diet, screenings, smoking cessation, sunscreen…

4. 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
Legal system is designed to protect unauthorized disclosures of records by a provider or payer; was developed in a siloed, paper based system in which provider and payers are the primary keeper of information.
Consumers’ access is a less important consideration and there is no distinction between providers, medical records and a patient’s personal health information

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

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

7. NY’s Consumer Engagement Team
NYS DOH
NYeC
Consumer Advocacy Organizations/Consultants
RHIO Representatives
Lori, Ellen Flink, Keegan Bailey
Rachel Block, Alex
Janlori Goldman, Art Levin, Katie and me
Pat Hale

8. 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
Co-chairs of Connecting NY’s and Clinicians subgroup – Christina Galanis, Irene Koch
Edo Banach – Visiting Nurse Service of NY
Janlori Goldman, Columbia University – a leader of consent work
Rachel Block – NYeC
Art Levin – Center for Medical Consumers – consent
California Healthcare Foundation, Markle Foundation, Robert Wood Johnson’s Project Health Design
Provide initial recommendations with in a year

9. 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
Christina – United Health Services
Irene – Maimonides Medical Center

10. 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
Through next April we’ll be developing materials and evaluating them in a few RHIOs, as well as packaging NY’s experience and knowledge for other states
Consent education has to be much broader than info about specific consent decisions – needs to be about Health IT in general and its potential benefits and risks.

11. For Example . . .
Developed by Rochester RHIO… other excellent work done by Brookline Health Information exchange, Visiting Nurse Service of NY
Build on what’s been done – develop materials that are customizable by RHIOs….
Turn over to Katie to talk re Advocacy (the final strategy) and the consumer advisory council and netwok – which links to all four strategies
To talk about advocacy – final strategy – turn you over to Katie. She’s also going to talk about the
May include ad copy, web site, PSA’s, posters

12. 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

13. 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)

14. 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.”

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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.

22. 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 . . .

23. 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)

24. 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

25. 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

26. 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