1. Alisa M. Hughley, MPH
alisa@enbloommedia.com
www.enbloommedia.com and www.alisamhughley.com
Principal, enBloom Media, LLC
a public engagement firm for health care organizations
social media outreach | focus groups & in-depth interviews
co-Host #HCHLITSS Chat
Health Communications, Health Literacy and Social Science
an interdisciplinary forum convening weekly on Twitter
Thursdays, 8pm EST
Recent Electronic Publications on Using IT for Patient Engagement:
Electronic Health Records Benefits: An e-Patient’s Story
at Health IT.gov Buzz Blog October 21, 2013
4 Things I Learned about MDs of Color on Twitter
at AIDS.gov blog on April 29th, 2014
Three Steps Towards Twitter Engagement as a Healthcare
Professional, Part II
at AIDS.gov blog on May 6, 2014
Patient Access to Personal Health
Information Across Health Care
Settings
Healthography
American Public Health Association
(APHA)142nd Annual Meeting & Expo
Health Informatics Information Technology (HIIT) Section
Poster Presentation Session 4378.0
Tuesday, November 18, 2014
4:30 – 5:30 pm

2. Patient Access to Personal Health Information
Across Health Care Settings
BACKGROUND
The passage of the Health
Information Technology for
Economic and Clinical Health
(HITECH) Act in 2009 has promoted
the adoption of meaningful use of
electronic health records (EHRs).
Stage 2 of meaningful use focuses
on the ability to view online,
download and transmit health data.
For stage 1, more that half of the
nation’s eligible health care
professionals (291,000) and
approximately 80% of eligible
hospitals (3,800) have received
incentive payments through the
meaningful use of electronic health
records as of April 20131. The
settings of care delivery continue to
impact the rate at which meaningful
use objectives are successfully
achieved. As health care systems
design and implement information
systems to support care delivery and
meet meaningful use requirements, it
is important to consider the patient
and caregiver as vital among the
many end-users of these complex
systems.
OBJECTIVE
METHODS
This qualitative study used in-depth interview and focus groups conducted
through a social media micro-blogging site to elicit patient experiences in
accessing personal health information. Written transcripts from in-depth
interviews were analyzed in the software application, Textal. The analysis helped
to identify both frequency and context of qualitative data points. Focus-group data
collected on the micro-blogging platform, Twitter was analyzed using tools
available through Twitter and Sumplur to understand both the qualitative data
provided and its relationship to the interview participants.
RESULTS AND DISCUSSION
Accessing health data: A Patient’s Experience
Healthcare settings. Clinical practice settings discussed included: 1) Academic Medical Centers 2) Physician group practices
based in Academic Medical Centers 3) Federally-operated clinical research centers 4) Community-based hospitals (with public
funding) and 5) Community-based hospitals (with private funding).
CONCLUSION
With 44% of all US adults living with at least one chronic
condition2 the need for sustained focus on health data
among patients and their caregivers has increased. To
manage a chronic condition is in effect to manage one’s
health data. At the same time, constraints in health care
settings by limited time challenge health professionals’ ability
to shepherd records and coordinate care even with the
assistance of EHRs. The role of the patient in coordinating
and managing his/her health care will continue to increase.
For a patient to do that well, the ability to truly access, view
online, download and transmit health data through
EHR/PHR systems in a timely manner must not only work
well for the health care providers but also for patients and
their caregivers.
REFERENCES
1CMS Staff. ”A Record of Progress on Health Information
Technology.” Fact Sheets April 2013: 1-2. Center for
Medicare and Medicaid Services. April 23, 2013. US
Department of Health and Human
Services.http://www.cms.gov/Newsroom/MediaReleaseData
base/Fact-Sheets/2013-Fact-Sheets-Items/2013-04-23.html
accessed on November 1, 2014.
2Fox, S. and Duggan, M. “The Diagnosis Difference.”
Internet and American Life Project November 2013: 1-94.
Pew Research Center. November 26, 2013. The Pew
Charitable Trust. http://www.pewinternet.org/files/old-media//
Files/Reports/2013/PewResearch_DiagnosisDifferen
ce.pdf. accessed on November 1, 2014.
ACKNOWLEDGMENTS AND CONTACT
Kathleen Hoffman, PhD MS MSPH
Founder
R.V. Rikard, PhD
Co-Founder
Health Communications, Health Literacy &
Social Science (HCHLITSS) Twitter Chat
Office of the National Coordinator for
Health Information Technology
Pew Research Center’s
Pew Internet and American Life Project
The purpose of the study was to direct health information
system planners’ to the patient as a vital end-user of
electronic health or personal health records (EHR/PHR).
– How timely is the access and meaningful is
the use of health data across health care
settings? Progress towards meaningful use
stage 2 by health care organizations in various
settings was characterized by interviewees.
– How effectively can patients and caregivers
access health data? Experiences of patients
and caregivers when accessing health data is
characterized through first-person interviews.
Alisa M. Hughley, MPH | Washington, DC
http://www.healthit.gov/Newsroom/inforgraphic-recprd-health-information-technology.
accessed November 1, 2014
In 2012, the wait to obtain medical records when the request was made by a patient or caregiver ranged from 3 to 30 days from
the time the request was reviewed by the medical institution. Academic Medical Centers with patient portals could deliver
personal health information within 3 days of reviewing a request using electronic delivery services (e-delivery). Community-based
hospitals relied on U.S. postal service or FAX machine to both receive requests and deliver personal health information.
The response time ranged from 10 to 30 business days underscoring the significant barrier of timely access to data. Transcript
analysis. Several additional themes arose from patients and caregivers recount of their experiences. Some participants cited
various social determinants of health resulting in physical or financial barriers to access personal health data. Transportat ion
access made some patients and caregivers more reliant on the U.S. postal service to request and receive health data as few
now keep personal FAX machines. This underscored the need for electronic access during 2012. Patients and
caregivers along with healthcare professionals and staff in health care organizations all revealed a need for greater
understanding of the ways which the HITECH Act has changed patient rights’ under the Health Insurance Portability and
Accountability Act (HIPAA). Moreover, some staff of health care organizations demonstrated attitudinal resistance to releasing
health data directly to patients or caregivers (with appropriate consent) rather than another medical institution. These themes
raised the question: who owns the data, in clinical or clinical research settings? Outdated EHR/PHR policies and IT
infrastructures reinforced physical, timeliness and attitudinal barriers impeding access to personal health information. There are
opportunities to improve health literacy for patients, caregivers and overcome attitudes among health professionals and staff .
Special recognition with gratitude for their assistance and support.
alisa.@.enbloommedia.com (e) | 202.630.7033 (p)| @enBloomMedia
(t)

3. BACKGROUND
The passage of the Health Information
Technology for Economic and Clinical Health
(HITECH) Act in 2009 has promoted the
adoption of meaningful use of electronic
health records (EHRs). Stage 2 of meaningful
use focuses on the ability to view online,
download and transmit health data. For stage
1, more that half of the nation’s eligible health
care professionals (291,000) and
approximately 80% of eligible hospitals
(3,800) have received incentive payments
through the meaningful use of electronic
health records as of April 20131. The settings
of care delivery continue to impact the rate at
which meaningful use objectives are
successfully achieved. As health care
systems design and implement information
systems to support care delivery and meet
meaningful use requirements, it is important to
consider the patient and caregiver as vital
among the many end-users of these complex
systems.
Source: http://www.healthit.gov/Newsroom/inforgraphic-record-health-
information-technology.accessed November 1, 2014

4. OBJECTIVE
The purpose of the study was to direct
health information system planners’ to
the patient as a vital end-user of
electronic health or personal health
records (EHR/PHR).
How timely is the access and
meaningful is the use of health
data across health care
settings? Progress towards
meaningful use stage 2 by health
care organizations in various
settings was characterized by
interviewees.
How effectively can patients and
caregivers access health data?
Experiences of patients and
caregivers when accessing health
data is characterized through first-person
interviews.
METHODS
This qualitative study used in-depth
interview and focus groups conducted
through a social media micro-blogging
site to elicit patient experiences in
accessing personal health information.
Written transcripts from in-depth
interviews were analyzed in the
software application, Textal. The
analysis helped to identify both
frequency and context of qualitative
data points. Focus-group data collected
on the micro-blogging platform, Twitter
was analyzed using tools available
through Twitter and Sumplur to
understand both the qualitative data
provided and its relationship to the
interview participants.

5. RESULTS AND DISCUSSION
Accessing health data: A Patient’s Experience
Healthcare settings. Clinical practice settings
discussed included: 1) Academic Medical Centers
2) Physician group practices based in Academic
Medical Centers 3) Federally-operated clinical
research centers 4) Community-based hospitals
(with public funding) and 5) Community-based
hospitals (with private funding). In 2012, the wait to
obtain medical records when the request was
made by a patient or caregiver ranged from 3 to 30
days from the time the request was reviewed by
the medical institution. Academic Medical Centers
with patient portals could deliver personal health
information within 3 days of reviewing a request
using electronic delivery services (e-delivery).
Community-based hospitals relied on U.S. postal
service or FAX machine to both receive requests
and deliver personal health information. The
response time ranged from 10 to 30 business days
underscoring the significant barrier of timely
access to data.

6. RESULTS AND DISCUSSION
Transcript analysis. Several additional themes arose from patients and caregivers recount of
their experiences. Some participants cited various social determinants of health resulting in
physical or financial barriers to access personal health data. Transportation access made
some patients and caregivers more reliant on the U.S. postal service to request and receive
health data as few now keep personal FAX machines. This underscored the need for
electronic access during 2012.

7. RESULTS AND DISCUSION
Patients and caregivers along with healthcare
professionals and staff in health care organizations
all revealed a need for greater understanding of the
ways which the HITECH Act has changed patient
rights’ under the Health Insurance Portability and
Accountability Act (HIPAA). Moreover, some staff of
health care organizations demonstrated attitudinal
resistance to releasing health data directly to
patients or caregivers (with appropriate consent)
rather than another medical institution. These
themes raised the question: who owns the data, in
clinical or clinical research settings? Outdated
EHR/PHR policies and IT infrastructures reinforced
physical, timeliness and attitudinal barriers impeding
access to personal health information. There are
opportunities to improve health literacy for patients,
caregivers and overcome attitudes among health
professionals and staff.

8. RESULTS AND DISCUSSION

9. RESULTS AND DISCUSSION

10. CONCLUSION
With 44% of all US adults living with at least one chronic condition2 the need for
sustained focus on health data among patients and their caregivers has increased.
To manage a chronic condition is in effect to manage one’s health data. At the same
time, constraints in health care settings by limited time challenge health
professionals’ ability to shepherd records and coordinate care even with the
assistance of EHRs. The role of the patient in coordinating and managing his/her
health care will continue to increase. For a patient to do that well, the ability to truly
access, view online, download and transmit health data through EHR/PHR systems
in a timely manner must not only work well for the health care providers but also for
patients and their caregivers.
1CMS Staff. ”A Record of Progress on Health Information Technology.”
Fact Sheets April 2013: 1-2. Center for Medicare and Medicaid
Services. April 23, 2013. US Department of Health and Human
Services.http://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-
Sheets/2013-Fact-Sheets-Items/2013-04-23.html accessed on
November 1, 2014.
2Fox, S. and Duggan, M. “The Diagnosis Difference.” Internet and
American Life Project November 2013: 1-94. Pew Research Center.
November 26, 2013. The Pew Charitable Trust.
http://www.pewinternet.org/files/old-media//
Files/Reports/2013/PewResearch_DiagnosisDifference.pdf.
accessed on November 1, 2014.
REFERENCES