Engaging Consumers

STRATEGY

1.
Compile and analyze research, literature, and best practices relevant to successful consumer engagement in HIT/HIE.

ACTIONS

1.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION An existing, trusted Federal Agency and/or NGO should compile and analyze research, literature, and best practices relevant to successful consumer engagement in HIT/HIE. (2007-2008)

STAKEHOLDERS Federal Agencies NGOs

STRATEGY

2.
Lay out the value case for HIT and HIE (including benefits & risks) from consumers’ perspective.

ACTIONS

2.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION Consumer Organizations, NGOs and Federal Agencies should lay out the value case (including benefits and risks), for HIT and HIE from the consumer perspective, with an emphasis on the potential impact on quality of care. Consumers should be included as an integral part of this process through an extensive community consultation technique. (2007-2008)

STAKEHOLDERS Consumer Organizations Federal Agencies NGOs

STRATEGY

3.
Develop an outreach and education plan for consumers and providers.

ACTIONS

3.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION A multi-stakeholder entity or forum (convened by an NGO) should develop an interactive outreach and education plan for consumers and providers that communicates the value case for HIT and HIE, how to evaluate and use particular tools and services, and how to participate more fully in one’s own health and healthcare. Consumer Organizations, with foundation support, as well as Quality Organizations, and other stakeholders should assess, encourage, and validate efforts to implement these strategies for the benefit of consumers. A community consultation technique should be incorporated into the outreach process. Implementation must also take into account the diverse needs of consumer populations, including varying levels of health literacy. (2008)

STAKEHOLDERS NGOs

STRATEGY

4.
Execute the outreach and education plans.

ACTIONS

4.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION Consumer Organizations and other stakeholders should execute an outreach and education plan for consumers. (2008-2009)

STAKEHOLDERS Consumer Organizations

4.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION Provider Organizations should execute an outreach and education plan in partnership with the organizations leading the consumer outreach and education plan. (2008-2009)

STAKEHOLDERS Providers/Provider Organizations

STRATEGY

5.
Create consensus principles and standards that support consumer-control of electronic personal health information.

ACTIONS

5.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION Consumer Organizations, Provider Organizations and NGOs should launch an open, transparent process involving every stakeholder of healthcare from both the public and private sectors to gain consensus acceptance around the following common principles and processes to support consumer control of electronic personal health information (2008-2009): Consumers should have easy access to review, add notations and suggest corrections to existing information in their own records. Consumers should be able to limit which of their health information could be shared with which providers, in a manner compliant with HIPAA, when applicable. Consumers should be able to limit how their personally identifiable medical information is used outside of care delivery (e.g. for research), consistent with all applicable federal, state and local law. Consumers should be able to easily designate others as proxies to act on their behalf (e.g. family member, caregiver, or guardian). The process and infrastructure for monitoring and certifying compliance with the common principles above among organizations, initiatives and technologies.

STAKEHOLDERS Consumer Organizations NGOs Providers/Provider Organizations

5.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION NGOs such as Standards Development Organizations, HITSP, and others, in partnership with HIT Vendors and Provider Organizations, should develop technological standards for functionalities in EHRs, PHRs and other applications that reflect the principles in 5.1. (2009-2010)

STAKEHOLDERS Health IT Vendors NGOs Providers/Provider Organizations

5.3

2007		2008		2009		2010		2011		ONGOING >>

ACTION HIT Vendors should ensure that the products they offer provide appropriate functionalities that reflect the common principles and standards created in 5.1 and 5.2. (2009-2010)

STAKEHOLDERS Health IT Vendors

5.4

2007		2008		2009		2010		2011		ONGOING >>

ACTION Federal Agencies (HHS and others) that fund HIT/HIE initiatives should use consumer principles described in 5.1 in setting funding requirements. (2009-ongoing)

STAKEHOLDERS Federal Agencies

5.5

2007		2008		2009		2010		2011		ONGOING >>

ACTION Certification mechanisms should be put into place by CCHIT and/or other appropriate NGOs, such as accreditation organizations, to establish product compliance (for EHRs, PHRs, and similar products) with functionalities needed to support the consumer principles outlined in 5.1. For example, EHRs and PHRs must possess compatible fields to enable granular levels of information exchange between them. (2008-ongoing)

STAKEHOLDERS NGOs

5.6

2007		2008		2009		2010		2011		ONGOING >>

ACTION Consumer Organizations, Provider Organizations and Federal Agencies, along with NGOs, should educate consumers about the benefits, risks and potential consequences of choosing to limit or to share their health information with providers. (2008-ongoing)

STAKEHOLDERS Consumer Organizations Federal Agencies NGOs Providers/Provider Organizations

STRATEGY

6.
Where electronically available, consumers should be able to acquire historical data from providers, payers and other entities to generate a more complete longitudinal record.

ACTIONS

6.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION Federal Agencies, Purchasers and Health Plans should align incentives to support HIT adoption by providers. (2008-ongoing) (See also Aligning Incentives)

STAKEHOLDERS Federal Agencies Health Plans Payers (Employers/Purchasers)

6.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION Congress should require digitization of an agreed upon core set of health data (such as the CCD or CCR) beginning in 2017.

STAKEHOLDERS Congress

6.3

2007		2008		2009		2010		2011		ONGOING >>

ACTION Congress should require those who hold digital health data about a patient (providers, insurers, labs, etc.) to make it available to him/her in digital form upon request. (Requirements begin for some in 2010—small clinics and others not yet able to meet that requirement have until 2017.)

STAKEHOLDERS Congress

6.4

2007		2008		2009		2010		2011		ONGOING >>

ACTION Federal Agencies (HHS) should provide grants and loans to support providers and others who need help transitioning to HIT/HIE. (2008-ongoing)

STAKEHOLDERS Federal Agencies

STRATEGY

7.
Make a variety of types of useful tools and services available to consumers.

ACTIONS

7.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION Federal Agencies, NGOs, Provider Organizations and other stakeholders (including the public and private sectors) should continue to develop free health content in digital form about a variety of conditions and in a variety of formats. (2007 - ongoing)

STAKEHOLDERS Federal Agencies NGOs Providers/Provider Organizations

7.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION Congress should provide explicit long-term funding support to Federal Agencies such as the National Library of Medicine and the National Institutes of Health to develop free health content in digital form about a variety of conditions and in a variety of formats. (2007-ongoing)

STAKEHOLDERS Congress

7.3

2007		2008		2009		2010		2011		ONGOING >>

ACTION Federal Agencies (CMS) should provide personal health information tools (or financial support to acquire them) to all Medicaid and Medicare beneficiaries. (2012-ongoing)

STAKEHOLDERS Federal Agencies

STRATEGY

8.
Design content, tools, and interfaces to support different consumer needs, including but not limited to different languages, levels of health literacy, cultural perspectives, geographic access needs, and physical disabilities.

ACTIONS

8.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION Vendors should use focus group input and product testing that addresses consumer preferences in product development, taking into account the wide variety of consumer needs. (2007-ongoing)

STAKEHOLDERS Health IT Vendors

8.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION Provider Organizations and Researchers, with support from NGOs (foundations), should develop prototypes of useful electronic health information tools, with an emphasis on those that help consumers and providers to make decisions based on scientific evidence. Information from these efforts should feed into the development of guidelines described in 9.1. (2007-ongoing)

STAKEHOLDERS NGOs Providers/Provider Organizations Public Health, Researchers, Etc.

8.3

2007		2008		2009		2010		2011		ONGOING >>

ACTION Federal Agencies (HHS) should research the development of tools to meet the specific needs of various underserved populations, in collaboration with Consumer Organizations. Information from these efforts should feed into the development of guidelines described in 9.1. (2008-ongoing)

STAKEHOLDERS Federal Agencies

STRATEGY

9.
Develop tools that explicitly help people to make evidence based decisions about their health.

ACTIONS

9.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION NGOs, in coordination with Federal Agencies (AHRQ) should study and develop guidelines and best practices for involving consumers in decision-making based on scientific evidence (e.g. information prescriptions, patient decision aids, and reminders/action items). These guidelines should be incorporated into the product certification process (See 5.5). (2007-ongoing)

STAKEHOLDERS Federal Agencies NGOs

STRATEGY

10.
Develop, post, and adhere to Notices of Information Policies that explain how health information is handled.

ACTIONS

10.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION NGOs should analyze how HIPAA applies to HIT/HIE and recommend how gaps in coverage need to be addressed. (2007-2008)

STAKEHOLDERS NGOs

10.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION Given the lack of a comprehensive privacy-protective policy framework, any entity that may have contact with electronic personal health information (State and Community HIE Collaboratives, Health IT Vendors, Health Plans, Payers, Providers, etc.) should develop and publicly post a Notice of Information Policies. (2007-ongoing)

STAKEHOLDERS Health IT Vendors Health Plans Payers (Employers/Purchasers) Providers/Provider Organizations State and Community HIE Collaboratives

10.3

2007		2008		2009		2010		2011		ONGOING >>

ACTION A Federal Agency (such as the Federal Trade Commission) should be responsible for enforcing Notices of Information Policies. (2007-ongoing)

STAKEHOLDERS Federal Agencies

STRATEGY

11.
Establish accreditation processes for HIE networks and services and certification of HIT tools.

ACTIONS

11.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION An NGO and/or Federal Agency should work with accreditation organizations to develop “policy standards” for State and Community HIE Collaboratives that establish compliance with the consumer principles described in 5.1. These “policy standards” should address attributes and/or procedures (for example, whether an HIE conducts its business in a transparent way). (2008-ongoing)

STAKEHOLDERS Federal Agencies NGOs

11.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION An NGO and/or Federal Agency puts into place a process to establish compliance by HIEs and others providing related services with the consumer principles described in 5.1. (2008-ongoing)

STAKEHOLDERS Federal Agencies NGOs

STRATEGY

12.
Define organizational requirements for consumer participation and transparency and require compliance with those requirements.

ACTIONS

12.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION An existing, trusted entity (NGO, Consumer Organization or Federal Agency) should define and catalog the types of entities that govern, oversee, operate and/or create policy for the electronic exchange of health information and produce recommendations regarding the appropriate level of consumer participation and requirements for transparency that should apply to them. (2007-2008)

STAKEHOLDERS Consumer Organizations Federal Agencies NGOs

12.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION An NGO, Quality Organization and/or Federal Agency should put into place a process to establish compliance with consumer participation and transparency requirements by entities described in 12.1. (2008-ongoing)

STAKEHOLDERS Federal Agencies NGOs Quality Organizations

STRATEGY

13.
Strengthen and expand the cadre of consumer organizations well-versed in HIT/HIE policy issues at the national, state, and local level.

ACTIONS

13.1

2007		2008		2009		2010		2011		ONGOING >>

ACTION A trusted, existing NGO should organize/support development of a larger cadre of consumer organizations well-versed in HIT/HIE policy and coordinates their activities for maximum impact. (2007-ongoing)

STAKEHOLDERS Consumer Organizations NGOs

13.2

2007		2008		2009		2010		2011		ONGOING >>

ACTION State and Community HIE Collaboratives and NGOs (foundations) should pay for individual consumers to attend HIT conferences in the states and at the national level, in order to support their education and participation in HIT and HIE initiatives. (2007-ongoing)

STAKEHOLDERS NGOs State and Community HIE Collaboratives