RCHCD
Patients’ Communication Of Health Status
To Clinicians Using A Web Interface
Mary Segal, PhD
Mark Weiner, MD
Executive Director
Research Center for
Health Care Decision-making, Inc.
Wyndmoor, PA
Assistant Professor
School of Medicine
&
Margaret Stineman, MD
Research Director
Good Shepherd Rehabilitation Hospital
Allentown, PA
Associate Professor
School of Medicine
&
Julie Lytton
School of Arts and Sciences
University of Pennsylvania
Philadelphia, PA
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And Our Fellow Investigators For Patient-Enabled
Electronic Medical Records:
Michael Cheikin, MD
Mary Klein, PhD
Chestnut Hill Rehabilitation Hospital
Moss Rehabilitation Research Institute
Ralph Marino, MD
R. Richard Schall, PhD
Thomas Jefferson University Hospital
Good Shepherd Rehabilitation
Hospital
Mary Schmidt, PT
Richard Zorowitz, MD
Magee Rehabilitation Hospital
University of Pennsylvania School of
Medicine
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
The age of the patient-enabled electronic
medical record is here. Several programs
are piloting this concept.

Patient-Enabled EMR
Informal definition: The patient-enabled
EMR is a web-accessible application that
permits patients to post and monitor
information about their health and
functional status, in a format that is readily
available to themselves and to their clinicians.
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
Advantages of the patient-enabled EMR

For clinicians:
- Ability to track patients’ health status from
the patients’ perspective regarding their
experiences of illness, disability, and wellness.
- A permanent record that can be examined
and accessed with greater flexibility and
efficiency than more traditional methods
permit.
Patient-Enabled EMR
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
Advantages of the patient-enabled EMR
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For patients:
- Ability to take ownership of their health
information and augment information available
from their health care providers.
- Opportunity to structure the physician-patient
encounter in advance of an office visit according
to their priorities.
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
The Research Center has several NIH-funded
projects currently underway in this area:

Usability of the patient-enabled-EMR, using a
“thinking aloud” protocol

Test-retest reliability of responses on the patientenabled EMR

Correspondence of patient-enabled EMR
responses to those obtained during a
telephone interview
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San Francisco
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
Usability and issues related to patient
acceptance and/or barriers

Format of the pilot application:
- 18 indicators in an inventory of physical functioning
and disability
- 20 indicators in an inventory of mood and depression
(CES-D scale)
- Feedback is provided to respondents after
completion, ordered by indicator intensity
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
Usability and issues related to patient
acceptance and/or barriers

Format of the pilot application (2):
- Help is available for answer definitions
- Suggestions are offered for patient communication
with clinicians
- Links are provided to web sites with information about
disability and depression
- Site is password-protected and encrypted for data
security and HIPAA compliance
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
Usability and issues related to patient
acceptance and/or barriers

Two alternative formats were tested for
presentation of items:
- A scrolling presentation, one screen for each
inventory
- Presentation of a single question per screen –
multiple screens per inventory
Patient-Enabled EMR
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Patient-Enabled EMR
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
Usability and issues related to patient
acceptance and/or barriers

Methods:
- A general rehabilitation sample of patients recently
discharged from inpatient rehabilitation recruited from a
consortium of six facilities in southeastern Pennsylvania
- Project staff tape an interview in the patient’s home
while the patient accesses the web site. “Thinking
aloud” by the patient with minimal cueing from staff is
encouraged during the session.
Patient-Enabled EMR
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
Usability and issues related to patient
acceptance and/or barriers

Methods (2):
- A variety of demographic and clinical indicators are
also collected: age, educational status, frequency of
internet use, intensity of disability
- Patients are called by a different staff member several
days after completion and asked to evaluate the web site
regarding usefulness and general ease of use.
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Test-retest reliability

Format restricted to presentation of a single
question per screen

Methods:
- Sample of orthopedic and joint replacement patients
without cognitive deficits recruited from the consortium
(offers best-case scenario for initial testing)
- Augmented with a sample of caregivers of
neurologically-compromised patients; caregivers are
asked about their own health and functioning.
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Test-retest reliability

Methods (2):
- Respondent fills out application on the web, and is
then locked out for five days. Respondent then fills out
the same application a second time.
- Age and frequency of internet use is also recorded.
- As in the usability study, respondents are called
several days after completion and asked to evaluate the
web site regarding usefulness and general ease of use.
Patient-Enabled EMR
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HIT Summit West
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San Francisco
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
Correspondence of patient-enabled EMR
responses to those obtained during a telephone
interview

Format restricted to presentation of a single
question per screen

Methods:
- Sample of neurological patients’ caregivers
without cognitive deficits recruited from
MossRehab, one of the participating hospitals
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
Correspondence of patient-enabled EMR
responses to those obtained during a telephone
interview

Methods (2):
- Respondents fill out web-based inventory, and a staff
member also interviews them by telephone survey
within five days of completion of web responses (web
and telephone orders are counterbalanced).
- Respondents are also asked by telephone interview to
evaluate the web site regarding usefulness and general
ease of use.
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
Characteristics of respondents:

Average age of patients: 55.6 years.

Educational status of patients: Half had college
degrees or beyond; half were high school graduates
or had some college.
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Characteristics of respondents (2):

Average amount of time patients spent on the
internet each week: 12 hours (4 on e-mail; 4
browsing; 4 in other activities such as games or
shopping). Average number of years patients had
been using the internet: 6.1.
►
This sample was more highly educated than the
average.

Average caregiver age: 49.5. Did not differ from
age of all eligible caregivers: 50.1.
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Study findings:

Preferences for scrolling compared to onequestion-per page formats. Of 20 respondents:
9 preferred one question per page
9 preferred scrolling
2 had no preference
We found no differences by demographics, although there
was a suggestion that those with higher educational status
preferred one-question-per-page. Reasons for
preferences were not always expected.
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Study findings:
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Aspects of the application considered most and
least helpful.
On a scale where
“1” = not at all helpful and
“5” = extremely helpful,
the overall site rating was 4.1.
The links to other web sites were judged the most helpful
(4.36) and the information about communication with
physicians and other clinicians was judged the least
helpful (3.86). The survey questions were rated similarly
to the overall site rating.
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Study findings:

Ease or difficulty in using the application.
On a scale where
“1” = very difficult and
“5” = very easy,
the overall site rating was 4.6.
The easiest was the interview about physical functioning
(4.8), while the most difficult to use was the interview
about mood and depression (4.3). This appeared to be a
function of the fact that many respondents recognized their
mood was fluctuating day to day, and it was hard to follow
the format and think about the week as a composite.
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Study findings:

Attitudes towards accessing an application like this
for respondent’s own benefit.
On a scale where
“1” = extremely likely and
“5” = extremely unlikely,
the overall site rating was 4.2.
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Study findings:

Beliefs about whether respondents would favor
sending responses to physicians in advance of an
office visit.
On a scale where
“1” = extremely favorable and
“5” = extremely unfavorable,
the overall site rating was 4.6.
Comments focused on current communication and
respondents’ concerns that such a web site be viewed as an
add-on, not a substitute, for in-person office visits.
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Study findings:

Concerns about data security over the internet.
Perhaps unsurprisingly, respondents believed that
data security posed few problems for applications such as
this one, on the condition that it was password-protected,
encrypted, and scale values of responses could not be
traced back to the individual.
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Study findings:

Test-retest correlations.
Using a small sample of caregivers of patients with brain
injury and stroke, test-retest correlations were
.79 for the Locus of Control scale
.66 for the CES-D Depression scale
.84 for the Care-giving Burden scale, and
.99 for the Social Support scale.
Average interval between administrations = 7.9 days.
The lower correlation for the CES-D is worth noting.
Patient-Enabled EMR
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HIT Summit West
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
Caveats in using web-based applications for
patient-initiated responses.

Preferences for formats may differ in important
ways that haven’t yet been identified.

If mood scales are used, support should be available
so patients aren’t left to cope on their own.

Our sample saw more benefit in sending results to
clinicians than in having the questionnaire for their
own benefit. However, they appreciated the links.
Patient-Enabled EMR
Segal et al.
HIT Summit West
March 8, 2005
San Francisco
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Next steps:

Recruit a sample of patients with disabilities who
require adaptive equipment, to understand barriers
in this population.

Pilot clinician acceptance and use.

Pilot other kinds of inventories, and experiment
with allowing patients to determine what
inventories are used.

Pilot use of the application at regular intervals
during the post-discharge phase.
Patient-Enabled EMR
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HIT Summit West
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San Francisco
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►
For more information, please contact:
Mary Segal, PhD
Executive Director
Research Center for Health Care Decision-making, Inc.
8200 Flourtown Avenue, Wyndmoor, PA 19038
t: 215-233-9600
msegal@healthcaredecisions.org
Patient-Enabled EMR
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March 8, 2005
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