Alisa M. Hughley, MPH

alisa@enbloommedia.comwww.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

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

Patient Access to Personal Health

Information Across Health Care

Settings

Patient Access to Personal Health Information

Across Health Care Settings

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.

BACKGROUND

OBJECTIVE

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.

METHODS

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).

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/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

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 .

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 Special recognition with gratitude for their assistance and support.

alisa.@.enbloommedia.com (e) | 202.630.7033 (p)| @enBloomMedia

(t)

BACKGROUNDThe 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

OBJECTIVEThe 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.

METHODSThis 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 DISCUSSIONAccessing 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.

RESULTS AND DISCUSSIONTranscript 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 DISCUSIONPatients 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

CONCLUSIONWith 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