# Presentation: 148696

## Materials Developed in Consultation With:

- David Lansky, Ph.D., Markle Foundation
- Reed Tuckson, M.D., UnitedHealth Group
- Joyce Dubow, M.U.P., AARP
- Abby Block, M.A., M.S.W., M.B.A., Centers for Medicare & Medicaid Services, HHS
- Jodi Daniel, J.D., M.P.H., Office of the National Coordinator for Health Information Technology, HHS

- November 29, 2005

- This briefing has been developed under the auspices of **Health Systems Research, Inc.** under a contract with the Office of the National Coordinator for Health IT, HHS

## Consumer Empowerment in a Health Information Technology Infrastructure 

- Facilitates and advances the realization of patient-centered health promotion/disease prevention and medical care delivery
- Encourages and enables activated consumers who are supported in their health and medical decisions, and in their relationship with their health care team
- Facilitates and supports individuals to capture, manage and act upon their personal health information

## All Key Stakeholders will Benefit from Greater Consumer Empowerment

- Patients, families, consumers
- Physicians, nurses, pharmacists, other health professionals
- Hospitals, nursing homes, other facilities
- Health plans
- Private and public health care purchasers
- Health care regulators and accreditors
- National, state, and local public health

## Major Barriers 

- Inability to locate patient information across multiple care settings
- How to authenticate each individual
- Significant segmentation of consumer market (small, diffuse populations with highly specific needs)
- Significant privacy concerns about internet and health information access by government, plans, employers
- Low level of public trust in health information services not connected to personal physician

## Major Barriers (cont.)

- Few EHRs to connect to
- No standards for information contributed by patient
- No established business model for consumer-facing applications
- Health information is complex and unfamiliar
- Significant barriers for people with low literacy, poor access to technology, lack of experience with health decision-making

## Environmental Scan 

- Public sector:
- CMS beneficiary portal
- VHA personal health record
- DoD personal health record
- CMS RFI for PHR strategies
- NCVHS letter to Secretary
- Uncoordinated initiatives (e.g., USDA nutrition tracking, NCI ca-Match)
- Very little in state programs

## Environmental Scan (cont.)

- Private sector
- Product and service management tools – e.g., pharmacy on-line tools, home health monitoring devices
- Provider portals to access EHRs
- Health plans’ pre-populated PHR and collaboration on standards for content and interoperability
- Commercial PHR products – internet, USB, desktop, PDA – offered through health plans, employers, direct to consumer

## Potential Implementation and Acceleration Opportunities - 1

**My personal health record:**
*[complete, personally controlled health information – family history, treatments, medications, results, symptoms, preventive actions, allergies ...]*
- Many definitions, low consensus of what “it” is
- Needs to be specified in terms of functions and features for particular populations
- Not yet feasible to base PHR on connection to EHRs or RHIOs
- Practical choices are:
- To build PHR from existing digital data systems
- To offer one or more PHRs for specific populations
- To stimulate PHR market through data sharing strategies
- Significant privacy concerns
- Significant challenge to authenticate individuals and maintain security

## Potential Implementation and Acceleration Opportunities - 2

**My medication summary: **
*[current and recent prescriptions, prescriber, dose, date, instructions]*
- Provides high value to large population
- Can be initiated from existing digital systems (PBMs, retail pharmacies, data warehouses)
- Significant experience exists; KatrinaHealth model
- Can leverage public recognition of HIT value in emergencies
- Useful in individual emergency situations for broad cross-section of consumers
- Can supplement existing commitment to e-prescribing
- Can support increased consumer participation in safety (correct errors, adverse event reporting)
- Privacy and authentication challenges – but in narrower domain

## Potential Implementation and Acceleration Opportunities - 3

**My health record locator:**
*[indexing system that permits user to find location of a person’s health information across entire community]*
- Provides for adjudication of identities across decentralized networks
- Necessary infrastructure to most federated health information exchange strategies
- Likely improvement in some short-term information retrieval – but would need to be evaluated
- Useful transitional platform between digital and paper worlds, internet and fax/phone modes
- Difficult to populate without business/social infrastructure, agreements, policies; will require cooperation of numerous parties
- Public awareness benefits of having people see scattered records, understand potential for aggregating them

## Potential Implementation and Acceleration Opportunities - 4

**My registration information:**
*[single entry of the “clipboard” – demographics, insurance, family history, medical history]*
- Easy for public to understand
- Increased convenience, accuracy
- Valuable foundation for later information exchange infrastructure
- Requires authentication and privacy issues to be broadly addressed
- Public awareness benefits by introducing concept of information portability, patient control
- Potential for replicating errors, should be evaluated