Key Elements: Engaging Consumers

Engaging Consumers Principles

Health IT and health information exchange (HIE) can provide the knowledge and tools to enable consumers to fully engage in their own care in partnership with providers and the larger health system. Such tools allow consumers to do more for themselves, including making informed behavioral choices, knowing when to seek outside care, and coordinating the care they receive from multiple sources. Health IT can create a new standard of care in which delivering information, self-care tools and decision aids to the patient are as integral to high quality care as providing tests, medications and treatments.

While there were many areas of consensus, the broader vetting process identified some priority areas where consensus has not yet been established. Nearly all stakeholders agree strongly in principle that consumers should be able to control their own health information, but the specific policies and mechanisms to implement this principle have not yet been well defined, let alone broadly accepted or developed.

For example, there is not consensus in the industry regarding the level of consumer control with regard to de-identified health information for non-direct care purposes such as research. In addition, when it comes to consumer control of personally identifiable information, some stakeholders are concerned about giving more control than HIPAA currently requires, particularly in the areas of information necessary for treatment, payment or administrative operations. There is also ongoing discussion regarding the interpretation and application of HIPAA itself. Finally, as we seek to mobilize patient data in order to improve quality, safety and efficiency of healthcare delivery, questions arise such as which providers should have access to what types of data, under what circumstances. This applies to both identifiable information and de-identified information, which could be used for analysis, aggregation and reporting purposes beyond what is needed for direct patient care.

The consent process should include a dialogue between patients and their clinicians regarding access to detailed identifiable clinical information. In addition, policy issues remain regarding the use of personal health information – identifiable or otherwise – for purposes other than direct patient care. All of these critical issues should be addressed as part of a multi-stakeholder consensus process, which we call for under strategy number five.

PRINCIPLES
The following principles, strategies and actions are designed to catalyze the development of health IT applications and the flow of information to support them in a way that emphasizes the fullest possible engagement of consumers in their own healthcare.

1. Consumer Engagement in Healthcare: Engaging consumers is critical in improving healthcare safety, equity, timeliness, quality, efficiency, and patient-centeredness. Health IT and health information exchange should support informed consumer action and decision-making about health and healthcare, in partnership with providers. The absence of health IT and health information exchange serves as a barrier to achieving these goals. In addition, consumers need clear information, shaped by their input, about health IT, health information exchange, and how to participate more fully in their own health and healthcare.
   
   
2. Consumer Access and Control of Personal Health Information: Consumers have the right to access all of their personal health information in an understandable form, as well as to annotate and request corrections to this information. Providers, payers and others who hold personal electronic health information have an obligation to make that information readily accessible or to facilitate its availability to the consumer. Individuals should be able to limit when and with whom their identifiably personal health information is shared.
   
   
3. Consumer Access to Electronic Health Information Tools and Services: Tools that engage consumers through the mobilization of electronic health information should be universally available to consumers regardless of whether or not they have health insurance, serve consumers’ varied needs, be integrated in the delivery of care and conveniently available outside of care delivery settings. These tools should also be designed explicitly to meet the needs of diverse groups including the economically and geographically underserved, disabled, older, and culturally diverse populations.
   
   
4. Consumer Privacy: Consumers have a right to privacy of their personal health information, consistent with all applicable federal, state and local law. (See also additional principles in Privacy, Security and Confidentiality.)
   
   
5. Consumer Trust: Consumers must be able to trust that their personal electronic health information is kept and used, with appropriate consent, in a secure, reliable and auditable manner. All stakeholders in healthcare who handle personal health information must make their policies regarding privacy and information use public, understandable and easily accessible.
   
   
6. Consumer Participation and Transparency: All entities that govern, oversee, operate and/or create policy for the electronic exchange of health information should be transparent and open to meaningful consumer participation.