Review of PHR by Peter Murray at NI2009, Helsinki, Finland

1. What does 'PHR' mean to people?
Some current models and
perspectives
Peter J. Murray

2. 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)

3. 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)

4. 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)

5. 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

6. 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 . . .

7. 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/]

8. 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]

9. 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]

10. PHRs provided by health care organizations
UK's NHS Health Space
http://www.healthspace.nhs.uk/
(HealthSpace is a free, secure online personal health “organiser” [sic].)
Denmark's Health Portal
http://www.sunhed.dk
USA/AHIMA myPHR
http://www.myphr.com
MyHealtheVet
http://www.myhealth.va.gov

11. New Players
●
Google Health
●
https://www.google.com/health/p/
●
“Google Health allows you to store & manage all of
your health information in one central place.”
●
Microsoft HealthVault
●
http://www.healthvault.com/
●
“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.”

12. 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?

13. 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.

14. Some 2008 research
www.connectingforhealth.org/resources/ResearchBrief-200806.pdf

18. 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)

20. 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

21. 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?