Personal Health Records and Web 2.0: New Ways for Patients to Manage Health Data

Personal Health Record and web 2.0: a
new way for patients and citizen to
collect, handle, and share their own
health data

Eugenio Santoro
eugenio.santoro@marionegr.it
Laboratory of Medical Informatics
Department of Epidemiology
Istituto di Ricerche Farmacologiche “Mario Negri”

E. Santoro - IFHRO 2010, November 18 2010

AHIMA Definition of PHR
"The personal health record (PHR) is an
electronic, universally available, lifelong
resource of health information needed by
individuals to make health decisions.
Individuals own and manage the information
in the PHR, which comes from the health care
provider and the individual. The PHR is
maintained in a secure and private
environment, with the individual determining
the rights of access. The PHR is separate
from and does not replace the legal record of
the provider.“
AHIMA e-HIM Personal Health Record Work Group. "The Role of the Personal Health Record
in the EHR." Journal of AHIMA 76, no.7 (July-August 2005): 64A-D.
http://www.webcitation.org/5Vlj7zE7EIFHRO 2010, November 18 2010
E. Santoro -

Personal Health Record – Key
points
• A PHR is different form an electronic health
record (EHR) that is maintained by the health
care provider/hospital/physician

• PHRs are stored in a private, secure,
centralized databases located on web servers

• A PHR is under control of the patient. The
owner of the PHR can decide:
- Which information are to be collected/uploaded
- Who can wiew them
- With whom share them (family
members/physicians ..)

Which health data a PHR should
include - 1
• Patient demographics (including name and
date of birth)
• Emergency contacts (family members,
physicians, specialists, dentists)
• Health insurance information
• Important events and hereditary conditions
in family history
• Opinions of specialists
• Important tests results (laboratory,
radiological, etc.)

AHIMA

Which health data a PHR should
include - 2
• Eye and dental records
• Correspondence between the patient and
his health providers
• Dates of significant illnesses and surgical
procedures
• Current medications and dosages
• Discharge summaries
• Medicine and allergy lists
• Immunization status and dates
• Data about life style and habits (e.g.
smoking, weight, height, bmi, etc.)
AHIMA

PHR - Data collection

• Manually by the owner of the PHR

• Automatically by the owner of the PHR
• home glucometer
• blood pressure readings
• other devices

• Other providers (if an agreement exists)
• pharmacies
• labs
• health care providers
• EHR/EMR

Some tools provided by the PHR
systems - 1
• Checking for drug interaction as soon as
medications are uploaded
• Checking for drug/allergies interaction
• Home monitoring and management of
health parameters (e.g. weekly/monthly
graph of blood pressure)
• Scheduling of appointments with
physicians
• Reminders for health screening programs
(diabetes, cancer, etc.)

Some tools provided by the PHR
systems - 2

• Medication refill and renewal
• Communications with the physician
(secure messaging)
• Community alerts and social networks
• Sharing with family members/physicians
• Links to reliable health information systems
for medical education


PHR Systems: Option 1
Stand alone: the user
can enter, modify and
update everything

PHR

© Gunther Eysenbach, CC-BY

Based on: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ.
J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6


Tethered: the user can view
his health information from
a EHR system
Read only
EMR PHR

Read+Write/
Annotate
EMR PHR




Integrated: the user can view and
enter information into his record
that can be shared or added to his
medical record (EHR)

EMR PHR

Different providers
PHR
EMR PHR




Google Health


Microsoft HealthVault


Dossia


UK NHS HealthSpace


Usage of PHR systems - 1

• Consumers with online access to their health
information pay more attention to their health
• PHR usage (in US) is low (7%), but doubled
in two years.
• PHR users are young (11%), highly educated
(12% college graduated)and higher income
(13% with >75.000$), frequent Internet users
(12%), suffering from 3+ chronic conditions
(9%)

CALIFORNIA HEALTHCARE FOUNDATION 2010 E. Santoro - IFHRO 2010, November 18 2010

Usage of PHR systems - 2

• Less educated, lower-income and chronically
ill patients report greater value from using a
PHR
• Two out of three Americans are concerned
about the privacy of their health information;
concern is reduced by experience with and
benefits received from a PHR.

CALIFORNIA HEALTHCARE FOUNDATION 2010


Reasons limiting the use of the
PHR systems

CALIFORNIA HEALTHCARE FOUNDATION 2010


Advantages – Patient/Consumer
• Complete medical history stored in one place
• Centralization of health data
• Access data from anywhere (e.g. while traveling)
• Access data in case of emergency (by himself or by
ER physicians)
• Automatic notification of scheduled activities (medical
visits, drug administration/assumption)
• Home care monitoring and self-management of own
health conditions
• Improving of the doctor-patients communication

Promises/Drivers of PHR
2. Preventing Medical Errors
“The single most important
way you can help to prevent
errors is to be an active
member of your health care
team. That means taking
part in every decision about
your health care. Research
shows that patients who are
more involved with their care
tend to get better results.“
(AHRQ)

PHRs can help to engage
patients in their care.


Advantages – Physician/Hospital
• Access to patients complete medical history
• Checking of drug interactions
• Limitation of medical errors
• Reduction of the cost of care (avoid duplication
of examinations or prescription of drug already
taken by the patient) in patients suffering from
chronic diseases
• Identification of patients at risk


Promises/Drivers of PHR
1. Public health, prevention,
behavior change
• PHRs as an entry point for
behavior change programs (e.g.
smoking cessation, obesity)
• PHRs as an entry point for
customized health
recommendations
• PHRs can be used as
surveillance tools

Evaluation of Influenza Prevention in the
Workplace Using a Personally Controlled
Health Record: Randomized Controlled Trial
Florence T Bourgeois, William Simons, Karen
Olson, John Brownstein, Kenneth Mandl
J Med Internet Res 2008 (Mar 14); 10(1):e5


Advantages – Reseacrh
• PHRs may be a particularly valuable to study
relationships between health behaviour and
outcomes
• PHR could be used to selection possible
candidates to be included in clinical trials based
on their health conditions (consent for this
secondary data use should be obtained by the
patient)


Disdvantages
• Data may be uncompleted, inaccurate, difficult
to verify, in particular when they are collected
by the patient
• High heterogeneity among the PHRs systems -
low interoperability between PHRs and
PHRs/EHRs systems
• (patient’s perceived feeling of) scarce security
and privacy about his/her health data
- Patients express concerns that the data could be
accessed by unauthorized people


Characteristics of PHR 2.0

“PHR 2.0” have “Web 2.0” design features that
enable / facilitate participation, collaboration,
and openess
- Model social relationships between individuals
- Open standards
- Acknowledge consumers as “prosumers”
- Ability for consumers to share parts of their health
records with anybody


PHR 2.0

EMR PHR Other peoples’ PHR

PHR Other peoples’ PHR

EMR PHR
Other peoples’ PHR

Different providers

Community

Patientslikeme


Conclusions

• PHR’s are a fundamental means of
providing value driven healthcare
• Adoption rates are low but it is expected
they rise in the next years
• To obtain more advantages PHR systems
must be completely interoperable in order
to allow sharing of data between them
and between EHR systems
• PHR 2.0 could add further advantages

Thank you
Eugenio Santoro
eugenio.santoro@marionegri.it
www.twitter.com/eugeniosantoro
http://eugeniosantoro.wordpress.com
http://www.youtube.com/eugeniosantoro
http://www.slideshare.net/eugeniosantoro

Santoro E. “web 2.0 e medicina”. Roma 2009,
Il Pensiero Scientifico editore


Personal Health Records and Web 2.0: New Ways for Patients to Manage Health Data

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