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Health IT and EHRs: Principles and Practice, Sixth Edition

Chapter 17: Health IT for Consumers

Health IT for Consumers

Personal health records

Scanned documents

Software supplied by vendors

Offered by providers and others

Acquired by consumer

mHealth, aka digital health technology

Screening kits

Physiological monitoring

Social media sites for health consumers

PHR Definition – no standard

AHIMA defines the PHR as “an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR is separate from and does not replace the legal record of any provider” (AHIMA 2010)

Connecting for Health observes that “PHRs encompass a wide variety of applications that enable people to collect, view, manage, or share copies of their health information or transactions electronically” (2006).

PHR Definition – no standard (continued)

Health IT.gov defines PHR as:

“An electronic application used by patients to maintain and manage their health information in a private, secure, and confidential environment.”

PHRs:

Are managed by patients

Can include information from a variety of sources, including providers and patients themselves

Can help patients securely and confidentially store and monitor health information…

Are separate from, and do not replace, the legal record of any health care provider

Are distinct from portals that simply allow patients to view provider information or communicate with providers

Properly designed and implemented, PHRs can help patients manage their health information and become full partners in the quest for good health” (2013)

PHR Dimensions and Attributes

From Connecting for Health

Sponsor – supplier of PHR (provider, payer, employer, HIE, professional organization, or disease-related group – which may be non-profit or commercial)

Integration

Tethered – connected to sponsor (each of which may supply data to or use data from a PHR in different ways)

Standalone – independent of any sponsor

Platform – how PHR is technologically supplied

Data source – single sponsor supplies data; sources can be mixed

Consumer should always be included as a data source, but frequently is not when sponsor is a provider or payer

Consumer should have the ability to exercise control over who is provided access

Business model – how PHR is funded

Licensed, subscription, through advertisements, investment by sponsor

PHR Attributes – no standard

National Committee on Vital and Health Statistics notes that “PHRs are broadly considered as a means by which an individual’s personal health information can be collected, stored, and used for diverse health management purposes. There is no uniform definition, and the concept continues to evolve. NCVHS concluded that “it is not possible, or even desirable, to attempt a unitary definition at this time” (NCVHS 2006).

Health Level Seven (HL7) notes that its PHR-System Functional Model (see next slide) does not attempt to define PHR, but rather identifies features and functions necessary to create and manage an effective PHR. HL7 also makes a clear distinction between a PHR and a PHR system, where PHR is the underlying record that the software functionality of a PHR system maintains.

AHIMA organizes PHR attributes into six categories:

Functionality

Format and content

Privacy, access, and control

Maintenance and security

Interoperability

Ownership of the PHR

HL7 PHR System Functional Model

Source: HL7 2014

PHR Standards

Continuity of Care Record (CCR) from ASTM International E31 Committee on Health Informatics, Massachusetts Medical Society, American Academy of Family Physicians, and HIMSS

CCR is a specification of content for an organized, transportable set of basic patient information consisting of most relevant and timely facts about a patient’s condition, especially for use in referrals and transfers of patients across the continuum of care.

It is not an EHR.

It does not provide interactive clinical decision support.

It is not universally accessible.

It does not have a universal patient identifier or record locator service.

It may be rendered in XML or as a document when combined with HL7 CDA.

Clinical Document Architecture (CDA), from HL7, is a document markup standard that specifies the structure and semantics of clinical documents for the purpose of exchange. A CDA document is a defined and complete information object that can include text, images, sounds, and multimedia content.

CCR + CDA = CCD

HL7’s Clinical Document Architecture is a Web Services Architecture (WSA) to support the exchange of documents (See chapter 14).

ASTM and HL7 have harmonized these content and message standards to become the Continuity of Care Document standard.

Various types of document templates are being created by HL7 and the consolidation of these documents with the CCR content specification is referred to as the Consolidated-Clinical Document Architecture (C-CDA).

Current Status of PHR Utilization

More definitive information on PHR usage is needed.

It is often not clear to the average consumer what a PHR is; with those stating they have a PHR overwhelmingly maintaining it via paper received from providers and personal notes.

Providers contribute to lack of understanding of PHR by offering portals for scheduling appointments, paying bills, exchanging emails, and providing (often limited) access to a person’s health information, which they call a PHR.

Benefits of PHRs

Of strong interest to sponsors for different purposes, though mostly associated with consumer engagement, which is believed to enhance care coordination and improve patients. They are also of interest for the ability to make more informed health decisions, and ultimately improve health and lower the cost of health care.

Physicians find PHRs valuable when information from disparate sources is structured and legible. The American Academy of Family Physicians identifies benefits as:

Empowerment of patients

Improved patient-provider relationships

Increased patient safety

Improved quality of care

More efficient delivery of care

Better safeguards on privacy

Bigger cost savings as a result of improved documentation with PHRs lowering malpractice costs (Endsley et al. 2006)

Barriers to PHR Use

Some concerns reflect an incomplete understanding of PHRs.

Barriers and suggestions for addressing:

Barrier: Are data faithfully and accurately maintained?

Suggestion: Ensure PHR data are appropriately sourced

Barrier: No reimbursement for PHR review.

Suggestion: Move to patient entry of data via templates to move data to EHRs

Barrier: Liability for overlooking red-flag medical symptoms? Suggestion: Ask patients to use their PHRs as a personal reference

Barrier: Will patients understand the content of their health records? Will there be risk of using unscrupulous sources?

Suggestion: Provider workflow changes to educate and explain results saves downstream time. “Cyberseals” of approval can validate legitimacy of websites

Barrier: Are PHRs secure (like a flash drive or download from patient)? Suggestion: Virus protection and other measures should be the norm for all records

Deeper Challenges with PHR Best Practices

Should sensitive diagnoses be shared? (Yes, with appropriate security measures.)

Should entire medication list be shared? (Yes, with origin of documentation and updates.)

Should all lab results be shared? (Variations in workflow due to state law restrictions noted, but CLIA requirements have changed.)

Should all clinical notes be shared? (Access should be supplied on request.)

Should patients be authenticated to access PHR? (Yes.)

Should minors have access to PHRs, share access via proxies? (Variations in state law prevail.)

Policies and procedures should address these and other issues

Supporting Patient Use of PHR

Blue Button

Portal for Medicare benefits and services, as well as information about acquiring a PHR (including reference to myPHR.com.)

MyHealtheVet

Veterans Health Affairs portal for benefits and services, including Personal Health Journal and prescription refill requests; in the future, will be able to view portions of their medical records.

Ten Questions to Ask about PHRs

Mobile Health Devices

No significant differences across demographics of age, gender, income, education, and geography with respect to use of or interest in digital health technology.

Activities:

Integrated delivery networks enrolling patients in directed exchange

Wearable fitness devices, personal testing tools, health apps, and others, with caution for:

Digital footprints left behind

Interoperability (IEEE 11073 Health Informatics – Medical/Health Device Communication Standards recognized by FDA for medical device interoperability)

Reliable and easy-to-understand information via the web

Building communities in social media

Privacy and security important issues

Self-empowerment, often without the aid of their personal physicians

Consumer Empowerment & Patient Engagement

Consumer empowerment is the investment of power or authority in those who purchase goods and services

In healthcare, consumer empowerment is believed to make consumers more financially responsible and accountable for their own healthcare.

Consumer empowerment in healthcare is word of mouth enhanced through digital and web technologies.

Patient engagement is the actions individuals take to obtain the greatest benefit from healthcare services available to them. The National eHealth Collaborative Patient Engagement Framework & Consumer eHealth Readiness Tool outlines five phases of patient engagement:

Inform me

Engage me

Empower me

Partner with me

Support my e-community

Center for Advancing Health Engagement Behavior Framework

Federal Government Initiatives

Consumers deserve to know the quality and cost of their healthcare. Healthcare transparency provides consumers with the information necessary, and the incentive, to choose health care providers based on value.

Providing reliable cost and quality information empowers consumer choice. Consumer choice creates incentives at all levels, and motivates the entire system to provide better care for less money.

Health Plan Initiatives

Pioneers

BlueCross BlueShield

Aetna

Payers are supplying providers and consumers with:

Patient data to populate a PHR (and EHR)

Clinical analysis tools

Best practice and best process protocols

Reimbursement for e-visits

Employer Initiatives

The goal of employer-sponsored PHR is to let employees compare costs, availability of services, and to some extent performance across care providers, putting more power into their hands (and reduce costs for employer)

Unique concerns associated with potential for discrimination and rising premiums

Vendor Initiatives

Many vendors

Internet, software, paper-based, wearable engraved or electronic

Product for purchase or free

Unregulated, except

Health Breach Notification requires vendors to report breaches to Federal Trade Commission

Watchdog groups have helped assure solid practices

Center for Democracy and Technology

Electronic Privacy Information Center