On October 15th, the National Network of Libraries of Medicine, Southeast Atlantic Region (NN/LM SEA) shared what a joint task force of the Medical Library Association (MLA) and the National Library of Medicine (NLM) proposed for the definition of an PHR.
Let's compare the two:
Personal Health Record (PHR): An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual.
MLA-NLM Task Force
Electronic Personal Health Record (PHR): PHR is a private, secure application through which an individual may access, manage and share his/her health information. The PHR can include information that is entered by the consumer and/or data from other sources such as pharmacies, labs, and care providers. The PHR might or might not include information from the electronic health record (EHR) which is maintained by the health care provider and is not synonymous with the HER. PHR sponsors include vendors who may or may not charge a fee, health care organizations such as hospitals and health insurance companies, or employers.
Both are written as found with no editing or emphasis from me. I'm assuming HER in the latter quote is a typo, and one I may understand the origin of since I recently attended a forum (will blog about it soon!) where Word kept auto-correcting EHR to HER and it nearly drove me insane.
When it comes to explaining what a PHR is to the general public and not other people in the medical field, librarianship or information technology, I'm not sure either definition will be sufficient as a stand alone. I see a stronger possibility of "...what?" being their response to the one from the medical librarians with 4 sentences and 3 variables vs. NAHIT's single sentence with no variables.
I studied Pogue's Anti-Jargon Dictionary and think NAHIT's 'interoperability' may fall in alignment with his 'Functionality' complaint. Clarifying the 'multiple sources' as being healthcare-related would help so it's not totally arbitrary. The Social Security Administration will not suddenly suddenly plunk your disability information in your PHR... at least I hope not.
On the other hand, we in medical librarianship are fond of calling people 'consumers'... so why did the definition include both 'individuals' and 'consumers' for describing the same population? Was it really necessary to include all the 'and/or', 'might or might not', 'may or may not' variables up front for a basic definition? Why are we mentioning an electronic health record (EHR) in the definition for a PHR without also defining an EHR beyond something 'maintained by the health care provider', thus putting prior assumption on the consumer/individual to know exactly what that entails?
I am all for promotion of consumer health resources as part of PHR applications, but what exactly is the 'information assistance statement' that is being sent to these organizations to include in PHRs?
Am I a traitor to my field in respectfully disagreeing with the members of the joint task force about their definition for PHRs and wanting to use NAHIT's?