Alternative PHR models provide potential benefits to patients and providers. PHRs have evolved from passive paper records controlled by providers to interactive online tools controlled by patients. PHRs can empower patients through health education, self-management, and participation in medical decisions. They may also benefit providers through healthier patients, reduced errors, and lower costs. However, stand-alone PHRs without clinical involvement may be insufficient for managing chronic conditions. Future PHRs could offer full medical records, translation, connectivity to multiple data sources, and educational resources.

1. Alternative PHR models &
potential benefits
Claudia Pagliari

2. Context
• "Many envision a health care industry that is consumer-centric and
information-rich, in which medical information follows the consumer, and
information tools guide medical decisions…This will result in fewer
medical errors, fewer unnecessary treatments or wasteful care, and fewer
variations in care, and will ultimately improve [patient] care."
Delivering Consumer-centric and Information-rich Health Care, US DH&HS Jul 2004
• Without information there is no choice…. The future is about sharing
information, sharing decisions and sharing responsibility” (précis)
Cayton H. Introduction to Better Information, Better choices, Better Health: Putting
information at the centre of health. UK DoH Dec 16th, 2004

3. Varying definitions of the PHR
• “a collection of important information about your health or the health of
someone you are caring for, such as a parent or child that you actively maintain
and update. The information comes from your healthcare provider, and from
you.” American Health Information Management Association
http://www.myphr.com/your_record/index.asp
• “… a copy of all your medical information, collected from all of your doctors,
hospitals, and health insurance providers [and] other information which is
important to your health that doctors are usually unaware of - like your dietary
habits, sleeping habits, activities (such as smoking, or skydiving), your
symptoms, and reactions to medications, etc. It contains anything YOU want.
Records for Living Inc. http://www.recordsforliving.com/
• “an Internet-based set of tools that allows people to access and coordinate
their lifelong health information and make available appropriate parts of it
to those who need it” Markle Foundation (2003)
http://www.connectingforhealth.org/resources/final_phwg_report1.pdf

4. PHR models & evolution
• Patients can view provider’s records (paper or Passive Present Provider
electronic) in the clinical setting controlled
• Patients hold paper copies of provider’s
records (with or without personal notes)
• Patients can view provider’s EHR via internet
portal (or CD)
• Personal web space for patients to store Patient
health records (provider- originated and controlled
patient-originated)
• Multifaceted web-based PHR that patients
can use to manage and interact with their
EHRs (e.g. to input readings), communicate
with HPs (e.g. email queries, e-prescriptions,
bookings) and access IHCAs (e.g. care plans
in CDM, educational tools) Shared (but
Interactive Future patient
• Potentially –wearable/pervasive monitors
feeding data into a shared multifunctional controls)
PHR linked to EHR & active decision support

5. Internet Mediated Integrated
Care (“Clicks & Mortar”)
• Appointment scheduling
• Access to Electronic Medical Record
• Personal record keeping (accessible only by an agreed
set of people)
• Monitoring –
– Verbal
– Device
• Prescription refills
• Consultation support
• Formal Decision Support
• Links to education & support

6. Patient Interaction
• Collect Information
– Symptom diaries
• Administrative Tasks
– Scheduling
– Rx Refills
– Referrals
• Clinical Tasks
– Medication Refills
• Education
– Self-care
– Drug Interactions
• Reminders
– Preventive Health
• Communication
– Secure email
– Explanation of Benefits
Source: Safran 2005

7. http://www.patientsite.org
Courtesy of Danny Z. Sands, MD

8. Mail:
Services:
Secure
Prescription refills
Automated routing
Appointment requests
Task assignment
Referrals
View bill
Records:
Secure
All CG records
Upcoming appointments
Meds/Problems/Results
…
Personal records
Education:
Info prescriptions
Patient selected links
Predefined collections
Videos

9. Key attributes of an optimal
PHR
• Lifelong & Comprehensive
• Accessible any place, any time
• Private & secure
• Access controlled by patient
Markle Foundation 2003

10. Patient Control of Access

11. Potential benefits of PHRs for
the Patient
Empowerment i.e. participation, control, education (Ouschen et al, 2000;
Harris & Veinot, 2004) improved
•preventive behaviours for self/family (via education and personal health
monitoring)
•self-management & medication concordance (e.g. self-monitoring,
accessing personal care plans )
•participation in treatment decision making (e.g. by priming patients or
clinicians before a consultation)
•relationships with health professionals (-> trust -> motivation)
•personal health administration (e.g. appointments, costs)
• consulting flexibility (reduces dependency on ‘own’ doctor)
Safety
•Emergency access
•Increased knowledge and ability to correct reporting errors

13. Potential Benefits for
Providers & Organisations
• Healthier, more knowledgeable patients
• Reduced liability, if patients are taking control of their data and
making more informed choices
• Ability to track patients’ ‘hidden’ health behaviours, risk
behaviours and medications
• Fewer unnecessary consultations, reduced waiting lists
• Lower costs (?)

14. Warning: Stand-alone ePHRs
May Be Insufficient
• Disease management applications that encourage patients to enter very
detailed information pertaining to a single chronic condition may
provide some immediate benefit to users, but simply offering people a
means of recording information on a daily basis does not make them
better managers of their health or health care. Without a clinician at
the other end of the application continually providing advice, making
modifications to prescriptions or otherwise providing them with some
ideas to help better manage their condition; these systems are doomed
to fail (precis)
– Connecting for Health (Markle Foundation). 2004.
Connecting Americans to their Healthcare. Final Report
of the Working Group on Policies for Electronic
Information Sharing Between Doctors and Patients.
www.connectingforhealth.org.

15. Future Evolution
• Full patient access to medical record
• Automated access to hyperlinked:
– Medical glossaries
– Supplementary information
• Translation into different languages
• Connectivity to:
– Multiple data sources / EHR
– Personal Health Record
– Multimedia educational material
– Data from home-based monitoring
– Teleconsulting facilities