Personal health record
Encyclopedia
A personal health record or PHR is a health record where health data is curated by an individual user themselves. This stands in contrast with the more widely used electronic medical record
which is held by institutions such as a hospital and contains data entered by clinicians or billing data in order to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results (either entered by a patient or downloaded from the testing lab itself), data from devices such as wireless electronic weighing scales or collected passively from a smartphone.
dated June 1978; and even earlier in 1956 reference is made to a personal health log however, search results from PubMed also reveal that most scientific articles written about PHRs have been published since 2000.
The term "PHR" has been applied to both paper-based and computerized systems; however, current usage usually implies an electronic application used to collect and store health data. In recent years, several formal definitions of the term have been proposed by various organizations.
It is important to note that PHRs are not the same as EHRs (electronic health record
s). The latter are software systems designed for use by health care providers. Like the data recorded in paper-based medical records, the data in EHRs are legally mandated notes on the care provided by clinicians to patients. There is no legal mandate that compels a consumer or patient to store her personal health information in a PHR.
PHRs can contain a diverse range of data but usually include information about:
In addition to storing an individual's personal health information, some PHRs provide added-value services such as drug-drug interaction checking, electronic messaging between patients and providers, managing appointments, and reminders.
Since no particular architecture has been unanimously agreed upon as being the most effective, researching the benefits of various architectural models is a key priority. Regardless of the PHR paradigm, interoperability is the key component of PHR architecture. If PHRs serve only as a repository for an individual’s health information, it is unlikely that individuals who are not highly motivated will maintain their health records and find PHRs to be useful. Patient-entered information is desirable and important for managing health, however, clinicians must also have access to information provided by other health professionals. Interoperability is critical in terms of importing and exporting medical information to and from other entities. The importance of interoperability poses many challenges and research opportunities, including assessment of standards and data reliability.
Paper-based PHRs may be difficult to locate, update, and share with others. Paper-based PHRs are subject to physical loss and damage, such as can occur during a natural disaster. Paper records can also be printed from most electronic PHRs.
Example from New Zealand from 1984 to present. Dr Larry Skiba
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1959601/pdf/jroyalcgprac00170-0046.pdf
Child Health and Development Record book http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2010.05285.x/full
-based software that may have the capability to print, backup, encrypt, and import data from other sources such as a hospital laboratory. The most basic form of a PC-based PHR would be a health history created in a word-processing program. The health history created in this way can be printed, copied, and shared with anyone with a compatible word processor
.
PHR software can provide more sophisticated features such as data encryption
, data importation, and data sharing with health care providers. Some PHR products allow the copying of health records to a mass-storage device such as a CD-ROM
, DVD
, smart card
, or USB flash drive
.
PC-based PHRs are subject to physical loss and damage of the personal computer and the data that it contains. Some other methods of device solution may entail cards with embedded chips containing health information that may or may not be linked to a personal computer application or a web solution.
allow for data to be shared with other applications or specific people. Mobile solutions often integrate themselves with web solutions and use the web-based solution as the platform.
“When we launched Google Health, our goal was to create a service that would give people access to their personal health and wellness information. We wanted to translate our successful consumer-centered approach from other domains to healthcare and have a real impact on the day-to-day health experiences of millions of our users. Now, with a few years of experience, we’ve observed that Google Health is not having the broad impact that we hoped it would”
- Google
is typically defined as a view into the electronic medical records. In addition ancillary functions that support a health care provider's interaction with a patient are also found in those systems e.g. prescription refill requests, appointment requests, electronic case management, etc. Finally PHRs are data that resides with the patient, in a system of a patient's choosing. This data may have been exported directly from an EMR, but the point is it now resides in a location of the patient's choosing. Access to that information is controlled entirely by the patient.
A new concept being discussed (as of March 2010) is the UHR or "universal health record", which would be a patient-centered and patient-controlled body of information that could be shared in a granular way with particular health care providers at the patient's discretion in support of the patient's work with health care providers. This project would enlist open source
contributions and enhancements from developers, with particular emphasis on supporting patient expectations of privacy and responsible patient control of private health information (PHI). It is anticipated that effective implementation of one or more "open source" approaches to the UHR would benefit both providers and patients ("Some of us are sometimes providers - All of us are sometimes patients...") including providing more cost-effective solutions to currently difficult problems including entry/verification/update of personal health data, enabling responsible patient-controlled granular release of PHI, and supporting interoperability and effective collaboration of patients and physicians across disparate EHR/PHR platforms.
While PHRs can help patients keep track of their personal health information, the value of PHRs to healthcare organizations is still unclear.
Electronic medical record
An electronic medical record is a computerized medical record created in an organization that delivers care, such as a hospital or physician's office...
which is held by institutions such as a hospital and contains data entered by clinicians or billing data in order to support insurance claims. The intention of a PHR is to provide a complete and accurate summary of an individual's medical history which is accessible online. The health data on a PHR might include patient-reported outcome data, lab results (either entered by a patient or downloaded from the testing lab itself), data from devices such as wireless electronic weighing scales or collected passively from a smartphone.
Definition
The term “personal health record” is not new. The earliest mention of the term was in an article indexed by PubMedPubMed
PubMed is a free database accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintains the database as part of the Entrez information retrieval system...
dated June 1978; and even earlier in 1956 reference is made to a personal health log however, search results from PubMed also reveal that most scientific articles written about PHRs have been published since 2000.
The term "PHR" has been applied to both paper-based and computerized systems; however, current usage usually implies an electronic application used to collect and store health data. In recent years, several formal definitions of the term have been proposed by various organizations.
It is important to note that PHRs are not the same as EHRs (electronic health record
Electronic Health Record
An electronic health record is an evolving concept defined as a systematic collection of electronic health information about individual patients or populations...
s). The latter are software systems designed for use by health care providers. Like the data recorded in paper-based medical records, the data in EHRs are legally mandated notes on the care provided by clinicians to patients. There is no legal mandate that compels a consumer or patient to store her personal health information in a PHR.
PHRs can contain a diverse range of data but usually include information about:
- allergies and adverse drug reactions
- chronic diseases
- family history
- illnesses and hospitalizations
- imaging reports (e.g. x-ray)
- immunization records
- laboratory test results
- medications and dosing including over the counter medications and herbal remedies
- surgeries and other procedures
- vaccinations
- and Observations of Daily LivingObservations of Daily LivingObservations of Daily Living are cues that people attend to in the course of their everyday life, that inform them about their health.ODLs are different from signs, symptoms, and clinical indicators in that they are defined by the patient, and are not necessarily directly mapped to biomedical...
(ODLs)
In addition to storing an individual's personal health information, some PHRs provide added-value services such as drug-drug interaction checking, electronic messaging between patients and providers, managing appointments, and reminders.
PHR Architecture
PHR architecture consists of three primary components: Data, Infrastructure and Applications. Data refers to the information that is collected, analyzed, exchanged and stored by different information technologies. Examples include medical history, laboratory and imaging results, list of medical problems, medication history, etc. Infrastructure is the computing platform which processes or exchanges healthcare data, such as software packages and websites. Applications include the data exchange, transactional, analytical and content delivery capabilities of the system, such as appointment scheduling, medication renewal, patient decision support system and disease education materials. One model for a PHR system envisions PHRs as a “Hub and Spoke” model. This model places the patient-controlled PHR at the centre (representing a hub), connected to the various entities (or spokes) that interact with the patient, such as health practitioners, laboratories, health insurance companies and pharmacies. In this paradigm, PHR value increases as the functions of the patient-centred PHR and its connections with various entities increase.Since no particular architecture has been unanimously agreed upon as being the most effective, researching the benefits of various architectural models is a key priority. Regardless of the PHR paradigm, interoperability is the key component of PHR architecture. If PHRs serve only as a repository for an individual’s health information, it is unlikely that individuals who are not highly motivated will maintain their health records and find PHRs to be useful. Patient-entered information is desirable and important for managing health, however, clinicians must also have access to information provided by other health professionals. Interoperability is critical in terms of importing and exporting medical information to and from other entities. The importance of interoperability poses many challenges and research opportunities, including assessment of standards and data reliability.
PHR Solution Types
One of the principle distinguishing features of a PHR is the platform by which it is delivered. The types of platforms include: paper, electronic device, and web.Paper-based PHRs
Personal health information is recorded and stored in paper format. Printed laboratory reports, copies of clinic notes, and health histories created by the individual may be parts of a paper-based PHR. This method is low cost, reliable, and accessible without the need for a computer or any other hardware.Paper-based PHRs may be difficult to locate, update, and share with others. Paper-based PHRs are subject to physical loss and damage, such as can occur during a natural disaster. Paper records can also be printed from most electronic PHRs.
Example from New Zealand from 1984 to present. Dr Larry Skiba
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1959601/pdf/jroyalcgprac00170-0046.pdf
Child Health and Development Record book http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2010.05285.x/full
Electronic device-based PHRs
Personal health information is recorded and stored in personal computerPersonal computer
A personal computer is any general-purpose computer whose size, capabilities, and original sales price make it useful for individuals, and which is intended to be operated directly by an end-user with no intervening computer operator...
-based software that may have the capability to print, backup, encrypt, and import data from other sources such as a hospital laboratory. The most basic form of a PC-based PHR would be a health history created in a word-processing program. The health history created in this way can be printed, copied, and shared with anyone with a compatible word processor
Word processor
A word processor is a computer application used for the production of any sort of printable material....
.
PHR software can provide more sophisticated features such as data encryption
Encryption
In cryptography, encryption is the process of transforming information using an algorithm to make it unreadable to anyone except those possessing special knowledge, usually referred to as a key. The result of the process is encrypted information...
, data importation, and data sharing with health care providers. Some PHR products allow the copying of health records to a mass-storage device such as a CD-ROM
CD-ROM
A CD-ROM is a pre-pressed compact disc that contains data accessible to, but not writable by, a computer for data storage and music playback. The 1985 “Yellow Book” standard developed by Sony and Philips adapted the format to hold any form of binary data....
, DVD
DVD
A DVD is an optical disc storage media format, invented and developed by Philips, Sony, Toshiba, and Panasonic in 1995. DVDs offer higher storage capacity than Compact Discs while having the same dimensions....
, smart card
Smart card
A smart card, chip card, or integrated circuit card , is any pocket-sized card with embedded integrated circuits. A smart card or microprocessor cards contain volatile memory and microprocessor components. The card is made of plastic, generally polyvinyl chloride, but sometimes acrylonitrile...
, or USB flash drive
USB flash drive
A flash drive is a data storage device that consists of flash memory with an integrated Universal Serial Bus interface. flash drives are typically removable and rewritable, and physically much smaller than a floppy disk. Most weigh less than 30 g...
.
PC-based PHRs are subject to physical loss and damage of the personal computer and the data that it contains. Some other methods of device solution may entail cards with embedded chips containing health information that may or may not be linked to a personal computer application or a web solution.
Web-based PHR Solutions
Web-based PHR solutions are essentially the same as electronic device PHR solutions, however, web-based solutions have the advantage of being easily integrated with other services. For example, some solutions allow for import of medical data from external sources. Solutions including HealthVault and PatientsLikeMePatientsLikeMe
PatientsLikeMe is a data-driven social networking health site that enables its members to share condition, treatment, and symptom information in order to monitor their health over time and learn from real-world outcomes. Members are able to find and connect with patients like them, gain social...
allow for data to be shared with other applications or specific people. Mobile solutions often integrate themselves with web solutions and use the web-based solution as the platform.
PHR Genesis
A large number of companies have emerged to provide consumers the opportunity to develop online PHRs. Some have been developed by non-profit organizations, and many have been developed by commercial ventures. These web-based applications allow users to directly enter their information such as diagnosis, medications, laboratory tests, immunizations and other data associated with their health. They generate records that can be displayed for review or transmitted to authorized receivers. Despite the strong need for PHRs and the availability of various online PHR providers, there has not been wide adoption of PHR services. In fact, Google, being among the most innovative and history-making leaders of today recently announced discontinuation of its PHR service called Google Health starting January 12, 2012.“When we launched Google Health, our goal was to create a service that would give people access to their personal health and wellness information. We wanted to translate our successful consumer-centered approach from other domains to healthcare and have a real impact on the day-to-day health experiences of millions of our users. Now, with a few years of experience, we’ve observed that Google Health is not having the broad impact that we hoped it would”
EHRs, PHRs, Patient Portals and UHRs
The terms electronic health records, personal health records, and patient portals are not always used correctly. The generally agreed upon definition of these terms relates mainly to the ownership of the data. Although most patients might believe, "my body, my data" the FDA has started to weigh in on the issue of who owns healthcare data Million Dollar Question - Who owns your health data. Once data is in a PHR it is owned and controlled by the patient. Most EHRs, however, are the property of the provider, although the content can be co-created by both the provider and patient. A patient has a legal right in most states to request their healthcare data and under recent legislation those providers using a certified EHR will be required to provide an electronic copy as well. Electronic health records and electronic medical records contain clinical data created by and for health professionals in the course of providing care. The data is about the patient but the data resides in a health care provider's system. The patient portalPatient portal
Patient Portals are healthcare-related online applications that allow patients to interact and communicate with their healthcare providers, such as physicians and hospitals. Typically, portal services are available on the Internet at all hours of the day. Some patient portal applications exist as...
is typically defined as a view into the electronic medical records. In addition ancillary functions that support a health care provider's interaction with a patient are also found in those systems e.g. prescription refill requests, appointment requests, electronic case management, etc. Finally PHRs are data that resides with the patient, in a system of a patient's choosing. This data may have been exported directly from an EMR, but the point is it now resides in a location of the patient's choosing. Access to that information is controlled entirely by the patient.
A new concept being discussed (as of March 2010) is the UHR or "universal health record", which would be a patient-centered and patient-controlled body of information that could be shared in a granular way with particular health care providers at the patient's discretion in support of the patient's work with health care providers. This project would enlist open source
Open source
The term open source describes practices in production and development that promote access to the end product's source materials. Some consider open source a philosophy, others consider it a pragmatic methodology...
contributions and enhancements from developers, with particular emphasis on supporting patient expectations of privacy and responsible patient control of private health information (PHI). It is anticipated that effective implementation of one or more "open source" approaches to the UHR would benefit both providers and patients ("Some of us are sometimes providers - All of us are sometimes patients...") including providing more cost-effective solutions to currently difficult problems including entry/verification/update of personal health data, enabling responsible patient-controlled granular release of PHI, and supporting interoperability and effective collaboration of patients and physicians across disparate EHR/PHR platforms.
While PHRs can help patients keep track of their personal health information, the value of PHRs to healthcare organizations is still unclear.
PHRs and public health
PHRs have the ability to benefit the public health sector by providing health monitoring, outbreak monitoring, empowerment, linking to services, and research. PHRs can give consumers the potential to play a large role in protecting and promoting the public's health.External links
- Video Interview of MIT Professor Peter Szolovitz about early developments of the Personal Health Record
- MedlinePlus - Personal Health Records - The U.S. National Library of Medicine & National Institutes of Health.