Patient Access to Personal Health
Information Across Health Care
Settings
Alisa M. Hughley, MPH
[email protected]
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
Healthography
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
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
Patient Access to Personal Health Information
Across Health Care Settings
Alisa M. Hughley, MPH | Washington, DC
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.
http://www.healthit.gov/Newsroom/inforgraphic-recprd-healthinformation-technology.accessed November 1, 2014
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).
–
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/MediaReleas
eDatabase/Fact-Sheets/2013-Fact-Sheets-Items/201304-23.html accessed on November 1, 2014.
2Fox,
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. 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. Patients and
S. and Duggan, M. “The Diagnosis Difference.”
Internet and American Life Project November 2013: 194. Pew Research Center. November 26, 2013. The Pew
Charitable Trust. http://www.pewinternet.org/files/oldmedia//Files/Reports/2013/PewResearch_DiagnosisDiffe
rence.pdf. accessed on November 1, 2014.
ACKNOWLEDGMENTS AND CONTACT
Special recognition with gratitude for their assistance and support.
Kathleen Hoffman, PhD MS MSPH
Founder
R.V. Rikard, PhD
Co-Founder
Health Communications, Health Literacy &
Social Science (HCHLITSS) Twitter Chat
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.
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
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).
–
CONCLUSION
Office of the National Coordinator for
Health Information Technology
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.
Pew Research Center’s
Pew Internet and American Life Project
[email protected] (e) | 202.630.7033 (p)|
@enBloomMedia (t)
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/inforgraphicrecprd-health-information-technology.accessed November
1, 2014
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.
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) Federallyoperated 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). Communitybased 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.
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.
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.
RESULTS AND DISCUSSION
RESULTS AND DISCUSSION
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/MediaReleaseDatabas
e/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/oldmedia//Files/Reports/2013/PewResearch_DiagnosisDifference.
pdf. accessed on November 1, 2014.