The Healthcare Information Management and Systems Society (HIMSS) has published a PHR Definition and Position Statement. They define a PHR as:
a universally accessible, layperson comprehensible, lifelong tool for managing relevant health information, promoting health maintenance and assisting with chronic disease management via an interactive, common data set of electronic health information and e-health tools. The ePHR is owned, managed, and shared by the individual or his or her legal proxy(s) and must be secure to protect the privacy and confidentiality of the health information it contains. It is not a legal record unless so defined and is subject to various legal limitations.
The HIMSS Statement of Position is:
HIMSS supports the development of interoperable ePHRs which are interactive and use a common data set of electronic health information and e-health tools. HIMSS envisions ePHRs that are universally accessible and layperson comprehensible, and that may be used as a lifelong tool for managing relevant health information that is owned, managed and shared by the individual or his or her legal proxy(s). The ideal ePHR would receive data from all constituents that participate in the individual’s healthcare; allow patients or proxies to enter their own data (such as journals and diaries); and designate read-only access to the ePHR (or designated portions thereof).
HIMSS supports ePHR applications with the following characteristics:
• Provide for unique patient identification
• Allow secure access to the information contained in the ePHR
• Permit the receipt of email alerts that do not reveal protected health information (PHI);
• Allow patient proxy(s) to act on behalf of the patient
• Permit the designation of information to be shared electronically;
• Provides technical support to ePHR constituents at all times.
HIMSS champions the development of national standards to ease burdens placed on constituents due to variances in state law and the development of national and uniform state standards to address legal concerns raised by ePHRs such as reliability, reimbursement, ownership, access, transfer, and the limitations, rights and responsibilities of patients and providers for the use of e-health and ePHRs.
Similarly, HIMSS encourages the adoption of incentives by payors, providers, pharmaceutical companies, device manufacturers, and the federal and state governments of the United States to reduce the financial barriers to motivate widespread ePHR adoption.
This is a laudable position that seeks to reign in the wild west world of PHRs. Only time will tell whether the controlled economy or the marketplace prevails.
The HIMSS Statement of Position is:
HIMSS supports the development of interoperable ePHRs which are interactive and use a common data set of electronic health information and e-health tools. HIMSS envisions ePHRs that are universally accessible and layperson comprehensible, and that may be used as a lifelong tool for managing relevant health information that is owned, managed and shared by the individual or his or her legal proxy(s). The ideal ePHR would receive data from all constituents that participate in the individual’s healthcare; allow patients or proxies to enter their own data (such as journals and diaries); and designate read-only access to the ePHR (or designated portions thereof).
HIMSS supports ePHR applications with the following characteristics:
• Provide for unique patient identification
• Allow secure access to the information contained in the ePHR
• Permit the receipt of email alerts that do not reveal protected health information (PHI);
• Allow patient proxy(s) to act on behalf of the patient
• Permit the designation of information to be shared electronically;
• Provides technical support to ePHR constituents at all times.
HIMSS champions the development of national standards to ease burdens placed on constituents due to variances in state law and the development of national and uniform state standards to address legal concerns raised by ePHRs such as reliability, reimbursement, ownership, access, transfer, and the limitations, rights and responsibilities of patients and providers for the use of e-health and ePHRs.
Similarly, HIMSS encourages the adoption of incentives by payors, providers, pharmaceutical companies, device manufacturers, and the federal and state governments of the United States to reduce the financial barriers to motivate widespread ePHR adoption.
This is a laudable position that seeks to reign in the wild west world of PHRs. Only time will tell whether the controlled economy or the marketplace prevails.
1 comment:
While many articles have been written and academic papers published about the PHR, there is little consensus about what constitutes a PHR. Some of definitions portray the PHR as Patient Engagement application delivered by a healthcare organization while others portray it as a Consumer Empowerment application independent of any specific healthcare organization.
This confusion over the definition of a PHR was highlighted in a February 2006 report by the National Committee on Vital and Health Statistics (NCHVS), an advisory body to the U.S. Department of Health and Human Services on health data, statistics and national health information policy. This report concludes that “there is no uniform definition of ‘personal health record’ in industry or government, and the concept continues to evolve”. The report notes that the PHR concept may refer to either “the patient’s interface to healthcare provider’s electronic record (EHR)” or to “any consumer/patient-managed health record” and that “it is quite possible now for people to talk about PHRs without realizing that their respective notions of them may be quite different”. The NVCHS concluded that “it is not possible, nor even desirable, to attempt a unitary definition at this time”.
Connecting for Health is a private-public collaborative of more than 100 organizations funded by the Markle and Robert Wood Johnson foundations. Connecting for Health argues that a PHR is really a Consumer Empowerment application, and as such, should aggregate an individual’s health information across multiple sources. They contend that “personal health data custodians must not attempt to gain or retain market share by forcing consumers into exclusively proprietary mechanisms to access their personal data”. Instead, Connecting for Health believes that “if PHRs can be authorized to connect securely to multiple data streams on the network, then the competition among PHRs will be based on service, features, and value to the consumer, not mere custody of the consumer’s data”.
The early trend in Canada seems to be to treat the PHR as a Patient Engagement tool operated by healthcare organizations. One Canadian company, Aristex Health, attempted to create a consumer driven PHR but seems to have gone out of business.
Michael Martineau
eHealth Practice Lead
Branham Group Inc.
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