Defining the Personal Health Record


AHIMA Releases Definition, Attributes of Consumer Health Record


The personal health record (PHR) will play a key role in the move to a safer, more efficient, consumer-driven US healthcare system. It will be a valuable asset to individuals and families, enabling them to integrate and manage their healthcare information using secure, standardized tools.

It is imperative that patients, healthcare providers, and payers work together to develop a PHR model. There is no single pathway to a universal PHR, but establishing a common data set is a vital starting point.1 In January 2005 AHIMA launched an e-HIMTM work group to examine the role of the PHR in the electronic health record. The work group included HIM and industry leaders as well as AHIMA staff.

Based on research of the activity currently taking place within the healthcare industry, the work group formulated a definition of the PHR that included attributes, common data elements, emerging HIM roles, and consumer education and tools to promote its use. Shown here are the first highlights of that work: a definition of the PHR, its attributes, and a description and partial list of data elements. The group’s complete report will be published as a practice brief in the July–August issue of the Journal.

Definition of the PHR

The personal health record (PHR) is an electronic, 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 does not replace the legal record of any provider.

Attributes of the PHR

The following attributes describe more completely the ideal PHR:

Functionality

  • Aids the transition from paper to electronic record-keeping
  • Allows the individual to refill prescriptions electronically
  • Addresses the major issues of health literacy skills (reading and writing) in the context of culture and language
  • Allows selective retrieval and formatting of information by individuals or agents
  • Is portable (remains with the individual)
  • Helps the individual organize personal health information
  • Educates the individual about personal health information
  • Assists the individual with decision making and health management and wellness (e.g., reminders of health activities, health risk assessments, and public health and patient safety alerts)
  • Is flexible and expandable to support evolving health needs of the individual and family

Format and Content

  • Dynamic record that is continuously updated
  • Standard format is electronic
  • Incorporates paper documents and other media formats
  • Linked with, or contains copies of, provider’s legal or electronic records
  • Original and immediate source of information is identifiable
  • Includes dates of entry and occurrence of all information
  • Contains lifelong health information
  • Not considered a complete record
  • Not restricted by any one format
  • Not the legal record or electronic health record of a provider
  • Not restricted by culture or language
  • Providers use their professional judgment, as they do with any patient-supplied history, for clinical decision support or health management of the individual

Privacy Access and Control

  • Private and secure
  • Controlled by the individual
  • Accessible any place and time by individual
  • Accessible in an emergency
  • Individual has primary responsibility for the information

Maintenance and Security

  • Audit trail shows what information was viewed, by whom, and when
  • Amendable by original source as a means of maintaining record integrity
  • Individual decides what is incorporated into his or her record

Interoperability

  • Achieves easy, accurate, and consistent exchange with others by using communication and health vocabulary standards
  • Standard-driven to support evolving health information technology
  • Supports structured data collection from individual and stores information using a defined vocabulary
  • Links to supportive educational, management, productivity, and quality knowledge bases

Common Data Elements of the PHR

In order for consumers to use the PHR in different care settings and with different providers, it must contain common data elements. A recommended description and partial list is shown at left in the table “Common Data Elements.” Other sections include medications, clinician visits, hospitalizations, other healthcare visits, clinical tests, pregnancies, medical devices, family history, foreign travel, therapy, and vital signs. A complete list will be published as part of a practice brief in the July–August issue of the Journal.

Common Data Elements

The PHR should include common data fields so that it can be used across care settings and among different providers. A partial list of elements includes the following.

Personal Information

Name
    Last
    First
    Middle
    Nickname
    Maiden name
    Previous name

Address (multiple)
    Address type (primary and alternate)
    Address
        City
        State
        Zip code
        Country

Contact information
    Home phone
    Cell phone
    Pager
    Home e-mail address
    Work phone
    Work e-mail address
    Fax

Personal identification
    Gender
    Date of birth
    Social Security number
    Ethnicity or race
    Eye color
    Hair color
    Birthmarks or scars

Allergies and Drug Sensitivities

Foods
    Dairy products
    Egg whites
    Fish
    Milk
    Peanuts
    Sesame seeds
    Shellfish (shrimp, lobster)
    Soy
    Tree nuts (almond, walnut, hazel, Brazil, and cashews)
    Wheat

Medications
    Anticonvulsants
    Aspirin
    Barbiturates
    Beta-blocker medications
    Ibuprofen
    Insulin
    Iodine
    Penicillin
    Sulfa drugs

External
    Bee stings
    Cosmetics
    Dust mites
    Insect stings
    Latex
    Mold spores
    Pet dander
    Poison ivy
    Poison oak
    Poison sumac
    Pollen
    Wasp stings

General Conditions

Height (feet and inches)
Weight (pounds)
Blood type
    Type
    Special conditions
Last physical or check-up
    Date
    Doctor
    Result

General conditions checklist
    List of general conditions (sample)
        Acquired immunodeficiency (AIDS/HIV)
        Alcohol use/alcoholism
        Allergies
        Blood/circulation/transfusion
        Cancer/tumor
        Depression
        Diabetes/hypoglycemia
        Digestive system disorder
        Eye disorder/glaucoma
        Frequent or severe headache
        Hearing impairment
        Heart condition/chest pain/pounding heart
        High blood cholesterol
        Hypertension/high blood pressure
        Jaundice/hepatitis
        Kidney disease/stones/hemodialysis
        Musculoskeletal disorder
        Paralysis
        Respiratory system disorder
        Rheumatic fever
        Sexually transmitted diseases
        Shortness of breath
        Stomach, liver, intestinal problems
        Stroke
        Thyroid problems
        Tobacco use
        Tuberculosis
        Urinary/prostate
Immunizations (Sample)
Shortened name
    BCG Live
    Diphtheria, tetanus toxoids, acellular pertussis, and hepatitis B
    Haemophilus B and hepatitis B
    Hepatitis A and hepatitis B
    Influenza
    Measles, mumps, and rubella
    Meningococcal polysaccharide
    Mumps
    Pneumococcal
    Poliovirus
    Rabies
    Rubella
    Smallpox
    Tetanus and diphtheria
    Tetanus
    Typhoid
    Varicella
    Yellow fever

Note

  1. Connecting for Health. “Connecting Americans to their Healthcare.” July 2004. Available online at www.connectingforhealth.org/resources/generalresources.html.

Prepared by

The AHIMA e-HIM Personal Health Record Work Group:

Jill Burrington-Brown, MS, RHIA
Judith Fishel, RHIT
Leslie Fox, MA, RHIA
Beth Friedman, RHIT
Kathy Giannangelo, RHIA, CCS
Ellen Jacobs, MEd, RHIA
Dee Lang, RHIT
Chrisann Lemery, MS, RHIA
Beth Malchetske, MBA, RHIA
John Morgan, PhD
Karen Murphy, MBA, RN
Carole Okamoto, MBA, RHIA
Ronald Peterson
Deborah Robin, MSN, RN, CHCQM
Clarice Smith, RHIA, CHP
David Sweet, MLS
Melanie Thomas, RHIT
Julie Wolter, MA, RHIA
Beth Zallar, RHIA

The e-HIM Personal Health Record Work Group is supported in part by grants to the Foundation of Research and Education of AHIMA (FORE).


Article citation:
AHIMA e-HIM Personal Health Record Work Group. "Defining the Personal Health Record." Journal of AHIMA 76, no.6 (June 2005): 24-25.