What does 'PHR' mean to people?

Some current models and

perspectives

Peter J. Murray

Personal health record systems are more than just static

repositories for patient data; they combine data, knowledge,

and software tools, which help patients to become active

participants in their own care.

A PHR includes health information managed by the individual.

Data within PHRs can be subjective or objective.

(Tang et al, JAMIA, Dec. 2005)

A personal health record (PHR) is typically a health record

that is initiated and maintained by an individual. An ideal

PHR would provide a complete and accurate summary of

the health and medical history of an individual by

gathering data from many sources and making this

information accessible online to anyone who has the

necessary electronic credentials to view the information.

(Wikipedia – 16 June 2009)

The PHR is an ill-defined concept that has been

developing over several years. The term has been applied

to both paper-based and computerized systems; however,

current usage usually implies an electronic resource.

There is no legal mandate that compels a consumer or

patient to store her personal health information in a PHR

(as opposed to EHRs/EMRs).

(Wikipedia – 16 June 2009)

Diversity of Personal Health Record (PHR) ‘containers’

• Paper-based:- most common form - users develop appropriate strategies for use

(Moen & Brennan, 2005)

• Electronic: (via PC, mobile device, Smart Card, etc.)- users carry- proprietary or non-proprietary system- example: Health Transaction Network

(http://www.healthtransactionnet.com/) •On-line / net access: (technology notwithstanding)

- 3rd party- 24/7 access

Some definitions and views of PHR

The (e-) personal health record (PHR) is:

• An Internet-based set of tools• Allows people to access and coordinate their lifelong health

information AND make appropriate components available to those who need it.

PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies . . .

Some definitions and views of PHR

• Individuals access their PHRs via the Internet, using state-of-the-art security and privacy controls, at any time and from any location.

• Family member, doctors or school nurses, can see portions of a PHR when necessary. Emergency room staff can retrieve vital information from it in a crisis.

• “People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access on-line self-help tools. PHR connects each of us to the incredible potential of modern health care and gives us control over our own information.”

[The Markle Foundation “Connecting for Health Initiative”, 2003; http://www.connectingforhealth.org/]

Some definitions & views of PHR

• HIMSS defines an electronic Personal Health Record (ePHR) as:

• A universally accessible, layperson comprehensible, lifelong tool for managing relevant health information, promotion 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 / her legal proxy(s) and must be secure to protect the privacy and confidentially of the health information it contains.

• It is not a legal record unless so defined and is subject to various legal limitations.

[http://www.himss.org/content/files/PHRDefinition071707.pdf]

Some definitions and views of PHR

AHIMA e-HIM Workgroup definition of 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.• The definition of PHR is still evolving in the healthcare

community.

[http://www.ahima.org/emerging_issues/PHR.asp#Definition]

PHRs provided by health care organizations

UK's NHS Health Spacehttp://www.healthspace.nhs.uk/(HealthSpace is a free, secure online personal health “organiser” [sic].)

Denmark's Health Portalhttp://www.sunhed.dk

USA/AHIMA myPHRhttp://www.myphr.com

MyHealtheVethttp://www.myhealth.va.gov

New Players

• Google Healtho https://www.google.com/health/p/o “Google Health allows you to store & manage all of

your health information in one central place.”

• Microsoft HealthVaulto http://www.healthvault.com/o “A HealthVault account helps you collect, store and

share information with family members and gives you choice of applications and devices to help manage your fitness, diet and health.”

Some issues that arise on ePHR

What many provider-driven models of PHR neglect – people WANT to SHARE some of their health information (Eysenbach).

Who defines it? - healthcare provider or patient/consumer? - or third party (eg GoogleHealth)?

Who controls it?

Who decides where it 'resides', how it can be accessed, who can access it?

Who owns the data?

But .....

Less than 3% of people maintain an ePHR (2008 estimate for USA).

"PHRs and electronic medical records remain an industry-driven vision, not a consumer-driven one — focused on efficiency and reducing costs. It seems we’ve lost sight of whether the consumer really desires and is willing to participate in these services.

What are the circumstances for using a PHR and do the benefits outweigh the perceived risks?"

Keith Schorsch - founder and CEO of Trusera.com, a social health Web site.

Some 2008 research

www.connectingforhealth.org/resources/ResearchBrief-200806.pdf

AUTHORIZATION

I hereby authorize Google to share the health information contained in my Google Health profile(s) in its entirety, to only those entities and individuals I designate, for the purpose of providing me with medical care and for the purpose of sharing my information with others that I choose.

“You may only use Google Health if you reside in the United States.”(TOS - http://www.google.com/intl/en/health/terms.html)

Plans for HealthSpace were based on making it a hub for transactional services, so patients could book nurse or GP appointment, manage long-term conditions, order repeat prescriptions or medication reviews and complete pre-registration assessments online.

Figures ... show that out of more than 250,000 records created, just 812 people had activated an advanced HealthSpace account and only 437 had accessed their [Summary care Record].

EHI, June 16, 2009

Moving the locus of control from healthcare provider to patient

• Whose health record is it?

• Who determines what can be in it?

• Who owns the data and what can be done with it?