Use of Electronic Technologies to Promote Community and Personal Health for Individuals Unconnected to Health Care Systems Ensuring health care ser- vices for populations outside the mainstream health care system is challenging for all providers. But developing the health care infrastructure to better serve such uncon- nected individuals is critical to their health care status, to third-party payers, to overall cost savings in public health, and to reducing health dis- parities. Our increasingly sophisti- cated electronic technolo- gies offer promising ways to more effectively engage this difficult to reach group and increase its access to health care resources. This process requires developing not only newer technologies but also collaboration between com- munity leaders and health care providers to bring un- connected individuals into formal health care systems. We present three strate- gies to reach vulnerable groups, outline benefits and challenges, and provide examples of successful programs. (Am J Public Health. 2011;101:1163–1167. d o i : 1 0. 21 0 5/ A J P H . 2 0 10 . 30 0 00 3 ) John F. Crilly, PhD, MPH, MSW, Robert H. Keefe, ACSW, PhD, and Fred Volpe, MPA DURING THE PAST DECADE, the United States has experien- ced a rapid growth of electronic health information technology in hospital and health care provider systems to enhance access and quality for service recipients. State health departments have devel- oped health information ex- changes across large health care networks, insurance providers, and independent physician prac- tices, and the use of electronic health records has greatly accel- erated.1 These initiatives evince progress toward achieving a fully connected national health care system by 2014.2 Nevertheless, cities and counties struggle to understand the health care needs of individ- uals who do not or cannot easily access formal health care net- works but use expensive services for emergency and routine care. Health information technology is currently designed to benefit pri- marily populations already con- nected to such systems. As systems increase their use of health data to influence treatment and policy, developing strategies to include individuals who are largely out- side health care networks is criti- cal. The US health care system has been criticized for low-quality care that produces multiple medical errors3,4 and high-cost services that limit access to care,5 perpetu- ating health disparities. Primary care focused on preventing illness and death is associated with more equitable distribution of health and better outcomes than is spe- cialty care6---8; countries directing resources to primary care and enhancing population health have lower costs and superior out- comes.9 Although the United States has the world’s most ex- pensive health care system, other countries regularly surpass the United States on most health in- dicators, including quality, access, efficiency, ...

1. Use of Electronic Technologies to Promote Community and
Personal
Health for Individuals Unconnected to Health Care Systems
Ensuring health care ser-
vices for populations outside
the mainstream health care
system is challenging for all
providers. But developing
the health care infrastructure
to better serve such uncon-
nected individuals is critical
to their health care status, to
third-party payers, to overall
cost savings in public health,
and to reducing health dis-
parities.
Our increasingly sophisti-

2. cated electronic technolo-
gies offer promising ways to
more effectively engage this
difficult to reach group and
increase its access to health
care resources. This process
requires developing not only
newer technologies but also
collaboration between com-
munity leaders and health
care providers to bring un-
connected individuals into
formal health care systems.
We present three strate-
gies to reach vulnerable
groups, outline benefits and
challenges, and provide
examples of successful

3. programs. (Am J Public
Health. 2011;101:1163–1167.
d o i : 1 0. 21 0 5/ A J P H . 2 0 10 .
30 0 00 3 )
John F. Crilly, PhD, MPH, MSW, Robert H. Keefe, ACSW,
PhD, and Fred Volpe, MPA
DURING THE PAST DECADE,
the United States has experien-
ced a rapid growth of electronic
health information technology in
hospital and health care provider
systems to enhance access and
quality for service recipients. State
health departments have devel-
oped health information ex-
changes across large health care
networks, insurance providers,
and independent physician prac-
tices, and the use of electronic
health records has greatly accel-
erated.1 These initiatives evince
progress toward achieving a fully
connected national health care
system by 2014.2
Nevertheless, cities and
counties struggle to understand
the health care needs of individ-
uals who do not or cannot easily
access formal health care net-

4. works but use expensive services
for emergency and routine care.
Health information technology is
currently designed to benefit pri-
marily populations already con-
nected to such systems. As systems
increase their use of health data to
influence treatment and policy,
developing strategies to include
individuals who are largely out-
side health care networks is criti-
cal.
The US health care system has
been criticized for low-quality care
that produces multiple medical
errors3,4 and high-cost services
that limit access to care,5 perpetu-
ating health disparities. Primary
care focused on preventing illness
and death is associated with more
equitable distribution of health
and better outcomes than is spe-
cialty care6---8; countries directing
resources to primary care and
enhancing population health have
lower costs and superior out-
comes.9 Although the United
States has the world’s most ex-
pensive health care system, other
countries regularly surpass the
United States on most health in-
dicators, including quality, access,
efficiency, equity, and healthy
lives.10 Capturing data on individ-

5. uals unconnected to health care
systems can improve health care
access and outcomes while reduc-
ing costs––important public health
goals.
The federal government allows
states and local communities to
develop their own health care in-
frastructures. By making changes
at the local level, communities can
become more effective in using
existing services to capture health
care data for hard to reach pop-
ulations. We have examined sev-
eral strategies for using existing
electronic technologies to better
connect such individuals to some
aspect of their local health care
system.
THE PROBLEM OF HEALTH
CARE ACCESS AND
POSSIBLE RESPONSES
Converging social problems
(e.g., geographic isolation, limited
education, poor health, poverty,
and the marginalization of vul-
nerable groups including people of
color and the rural poor) inhibit
certain individuals’ access to
health care services.5 People who
have the poorest health tend to
receive the least health care, and
those with limited health options

6. because of inadequate insurance
or unavailable providers often use
high-cost services, such as urgent
care and emergency rooms, which
may not be appropriate to their
needs. This problem is significant:
nearly 75 million adults––42% of
the population younger than 65
years––had either no or inade-
quate insurance in 2007.11 Lack of
consistent, documented contact
impedes the accumulation of
meaningful health data for health
care planning and intervention
development. Uninsured or un-
derinsured groups are at risk for
remaining isolated despite health
care reform.
Although few health care ser-
vice data may be collected from
these groups, there are other ways
to track service use. Data from
contacts with other community-
based, nonhealth services can be
employed to target specific com-
munity health needs. For example,
some groups without regular
health care may have contact with
departments of social services,
criminal justice, specialty courts
(e.g., drug, mental health, veterans,
and family), or schools. Data
extracted from these systems, us-
ing secure data transfer protocols

7. already developed by health in-
formation exchanges, could help
address and evaluate the health
and service needs of these groups.
These data can then be used to
develop and strategically imple-
ment novel health-promotion and
grassroots interventions.
Similar approaches have been
applied to track or monitor clinical
intervention outcomes,12,13 clinical
trials,14 adherence to specific
COMMENTARY
July 2011, Vol 101, No. 7 | American Journal of Public Health
Crilly et al. | Peer Reviewed | Commentary | 1163
interventions,15,16 and infections.17
Broader cross-systems data-use
collaborations between commu-
nity and health care providers to
increase care among uncon-
nected groups have also been
successful.18---21 Clinical trials of
cross-program multidisciplinary
interventions have reduced such
health-related stressors as high
blood pressure and cardiac
problems among poor families,22,23
disseminated HIV prevention

8. programs in African American
communities,24 delivered inner-
city tuberculosis prevention
efforts,25 and decreased negative
birth outcomes among low-
income African Americans.26
Initiatives derived from these
concepts are already under way in
some communities. The Partnership
for Results in Auburn, New York
(http://www.partnershipforresults.
org), developed a cross-systems data
access and sharing collaboration
around children at risk for school
violence. San Francisco Children’s
System of Care (http://nccc.
georgetown.edu/documents/
ppsanfran.pdf) developed and
expanded their collaboration to
collect individual-level data on
youth across a series of systems,
including schools and probation,
to target and evaluate novel in-
terventions.
Access to health-related infor-
mation and health promotion has
expanded with the growth of the
Internet,27,28 particularly in the
mental health field, which is rap-
idly developing online versions of
actual treatment.29 No-cost per-
sonal health records are available
online, allowing individuals to
bank and control their own health

9. data. Broadband Internet access
and mobile wireless are available
in all urban and most nonurban
areas, offering new opportunities
to reach individuals outside health
care networks.
TECHNOLOGY TO REDUCE
BARRIERS TO HEALTH
CARE
Developing cohesive, commu-
nity-based strategies for using
health information technology and
electronic communication tech-
nologies optimally is critical to
dismantle barriers to health care
and health information.4 To help
communities reduce such impedi-
ments, we propose several strate-
gies.
Communities: Collaborations
for Health-Focused Use of
Community-Based Data
Individual-level data exist in
public and private agencies and
institutions (e.g., social services,
criminal justice, colleges, and trade
schools). These data are confiden-
tial and protected and typically
include personal identifiers and
service use history. Because of

10. their size and scope, these systems
have a similar database infra-
structure and often contain data
on the same individual. Collective
data from these systems could
help drive new forms of commu-
nity-wide health promotion and
service delivery. To build such
systems, three tasks are essential.
Task 1: Engaging the community.
It is essential to understand a
community’s political geography
and to identify entities that will
form the infrastructure to facilitate
and coordinate the use of data
from extant systems for that com-
munity to use. Choosing key
leaders from potential participat-
ing agencies that will form the
collaborative should be according
to their willingness, influence, and
ability to collaborate and properly
use centralized data. The collabo-
rative can then team with broader
health-focused organizations, such
as local health departments in
urban areas and offices of rural
health in state health departments,
to build the initial support base
and vision.
Task 2: Developing a plan. Once
formed, members of a collabora-
tive must develop an action plan.

11. A critical component is an assess-
ment of the content of all partici-
pating data systems. The plan may
involve building a comprehensive
data dictionary of potential data
fields applicable to health-related
risk. A feasible system must be
relatively simple, low cost, risk
controlled, time efficient, and
beneficial for participating
agencies. A key collaborator in this
task is a regional health informa-
tion exchange, which can assist in
providing a secure information
exchange environment. Particu-
larly important are the consent
and data security processes30 and
the development of effective data
use agreements that limit liability
regarding the unintended use of
data.31
Task 3: Forming a collaborative.
Building a collaborative to drive
this process and use the data re-
quires input from various experts,
including researchers, program
developers, and trainers, who can
introduce fresh ideas regarding
program development, care deliv-
ery, and outcomes tracking and
measurement. Indicators of the
success of the initiatives may in-
clude fewer missed days of work
or school, decreased emergency
room visits, and better communi-

12. cation among multiple health care
systems. Ideally, the collabora-
tive’s leadership should be based
at local public health departments
because of their community-wide
scope.
Veterans returning from over-
seas could serve as a test case for
how such a system might work.
Despite available care, many vet-
erans do not connect with the
Veterans Affairs health care
system and struggle for long pe-
riods with adjustment problems
affecting their physical and mental
health. Identifying points of entry
into community systems such as
schools or social services may help
these systems better meet the
needs of veterans with high-risk
burdens but only minimal in-
volvement with health or mental
health services. The Veterans Af-
fairs health care system has al-
ready obtained much information
that may be used to improve
returning veterans’ quality of
care.32,33
Health Care Systems:
Reaching Out Through
Electronic Means

13. Although the Internet can serve
as a conduit for reaching geo-
graphically and socially isolated
individuals, understanding its cur-
rent usability and limits is neces-
sary for effective planning. Inter-
net access occurs through (faster)
broadband or (slower) dial-up
depending on geography.34 Some
areas have no access at all; some
households choose not to use the
Internet (Table 1).
The Internet is the primary way
most users (67%) obtain health
care information,36 but only 63%
of US households have an Internet
connection. Urban areas have
greater broadband access than do
nonurban areas, which typically
have more dial-up connections.
Whites use computers to connect
to the Internet more often than do
African Americans (59% and
45%, respectively), but more Af-
rican Americans (48%) use mobile
wireless devices than does the
general population (32%).28
Wireless handheld devices are
better options for contact in rural
areas because signal delivery is
more flexible, although gaps per-
sist as the result of terrain or
geography. Consequently, reaching

14. COMMENTARY
1164 | Commentary | Peer Reviewed | Crilly et al. American
Journal of Public Health | July 2011, Vol 101, No. 7
individuals electronically may re-
quire a multifaceted approach.
Health-related Web sites pro-
vide information on specific med-
ical diagnoses (e.g., diabetes), gen-
eral medical guidance (e.g., http://
www.WebMD.com), access to
medical literature (e.g., http://
www.PubMed.com), and treat-
ment options for mental health
conditions.29 Sites such as http://
www.patientslikeme.com allow
individuals to report their symp-
toms and evaluations of medica-
tions or treatments.37 Message
dissemination technology can now
rapidly access targeted groups in
communities for specific safety or
health purposes.38 Twitter tech-
nology is increasingly used in pri-
vate industry39 and is gaining ac-
ceptance in medical settings.40
Effective use of these technolo-
gies by health care systems can
increase their range to reach un-
connected individuals. Handheld

15. devices can receive brief an-
nouncements, appointment re-
minders, or health tips. Wellness
webs (composed of individuals
with similar health-related needs
who are connected electronically
to enhance their ability to work
together and better meet their
health goals) targeting individuals
to receive messages according to
need or interest can be built
through collaborations among
community agencies, insurance
companies, and providers. These
technologies may also facilitate
connection with African Ameri-
cans and Hispanics. Technology
alone cannot alleviate disparities
in health care access, but a na-
tional study finds that although
people with higher incomes use
the Internet more for their health
records, people with lower in-
comes and people without college
degrees are likely to benefit more
from having their health informa-
tion online.36 Connection fosters
more regular, better coordinated
care, with improved outcomes.
Individuals: Building and
Maintaining Personal Health
Records

16. Many health care systems and
insurance companies offer public
health records (PHRs) to help pa-
tients coordinate their care and
keep in touch with their providers.
PHRs allow patients to view parts
of their own health record (e.g., lab
results, medication history), input
data (e.g., weight, blood pressure),
and schedule appointments. In-
surance companies are the pri-
mary providers of PHRs (51%),
followed by health care providers
(26%), but other health-related
organizations offer PHRs to mem-
bers (e.g., the American Heart
Association).36
Recently, both Google (Google
Health) and Microsoft (HealthVault)
introduced publicly available,
Internet-based PHRs at no cost.
Although these providers pledge
that PHR data will be secure and
not exploited for advertising or
other commercial purposes, users’
trust must be developed. Only
25% of potential users report
a willingness to use a PHR from
a private corporation.36 Despite
these concerns, PHR options have
considerable value. PHRs contain
functions that can import data
over the Internet directly from

17. specific health devices (e.g., blood
pressure monitors, weight scales,
blood glucose tests) plugged into
computers or handheld devices.
Both Google and Microsoft prod-
ucts allow individuals to designate
specific entities for data sharing.
With this feature alone, commu-
nities can implement and monitor
targeted health-promotion pro-
jects and measure progress and
outcomes from self-reported data
through a central location that
links participants. As individuals
join health care systems, become
insured, or relocate, they can ex-
port and import data to electronic
health records and back into PHRs
no matter where they receive care.
MOVING FORWARD
Although they do pose some
risks, using electronic technologies
to improve conventional health
services offers opportunities to
reduce health disparities. It is in-
structive to examine successful
community programs and imper-
ative to continue assessing how
best to harness these technologies
to advance public health goals
without compromising privacy
or security. Researchers should
conduct rigorous reviews of the

18. literature to identify promising
programs and recommend appro-
priate policies and safeguards.
Developing new avenues of
communication with various
health care systems has already
helped unconnected individuals
access health care in some regions.
Through strategic collaborations
using established technologies, or-
ganizations such as participants in
the Substance Abuse and Mental
Health Services Administration’s
Drug Free Communities program
have been successful, including
incorporating accountability mea-
sures. One program in Florida
(http://www.onevoiceforvolusia.
org/data.htm) has included in its
mission promoting cross-system
data-gathering capabilities to ad-
dress high-risk groups. Inclusive
consensus building and commu-
nity action planning approaches
have produced successful systems-
level interventions in several US
cities and counties,41---43 enabling
vulnerable groups to take charge
of their health information.44 Such
initiatives not only create alterna-
tive access but also have important
policy implications aligned with
Healthy People 2020 objectives.45
TABLE 1—US Internet Connection Types and Use by Region:

19. October 2007
South (n = 43 370) Midwest (n = 26 714) West (n = 26 203)
Northeast (n = 21 553)
Urban
(n = 32 510), No. (%)
Nonurban
(n = 10 861), No. (%)
Urban
(n = 20 461), No. (%)
Nonurban
(n = 6253), No. (%)
Urban
(n = 23 322), No. (%)
Nonurban
(n = 2882), No. (%)
Metro
(n = 18 154), No. (%)
Nonurban
(n = 3399), No. (%)

20. Dial-up 2872 (8.8) 1976 (18.2) 1752 (8.6) 1374 (22.0) 2093
(9.0) 531 (18.4) 1345 (7.4) 632 (18.6)
Broadband 16 772 (51.6) 3682 (33.9) 10 689 (52.2) 2379 (38.0)
13 227 (56.7) 1376 (47.7) 10 088 (55.6) 1635 (48.1)
No use 9704 (29.9) 4073 (37.5) 5693 (27.8) 1776 (28.4) 5883
(25.2) 724 (25.1) 5421 (29.9) 859 (25.3)
Overall use 19 740 (60.7) 5677 (52.3) 12 494 (61.1) 3764 (60.2)
15 390 (66.0) 1918 (66.6) 11 450 (63.1) 2287 (67.3)
Source. Data from the US Census Bureau, Current Population
Survey, Internet Supplement, October 2007.35
COMMENTARY
July 2011, Vol 101, No. 7 | American Journal of Public Health
Crilly et al. | Peer Reviewed | Commentary | 1165
For example, health policy deci-
sions are generally derived from
medical data from health care
systems and insurance compa-
nies.46 Using these data as the
primary source can invite the ap-
pearance of full knowledge when
the data actually represent only
individuals connected to the sys-
tem; excluding the unconnected
generates an incomplete picture
that can perpetuate disparities in
access and outcomes.

21. The new federal health reform
legislation is already promoting
creative changes by increasing
funds for community health
centers to boost the number of
treated patients.47 Under this
legislation, millions of Americans
will gain access to care previously
unavailable to them. There is an
urgent need to effectively handle
this expected rapid growth. Shift-
ing greater focus, responsibility,
and control to the local commu-
nity constitutes one encouraging
approach. For example, collabo-
ration to better distribute care
may prompt more efficacious
distribution of health care fund-
ing. At the time of this study,
health care dollars flowed directly
to formal providers as reim-
bursement for services rendered.
The distribution of funds depends
entirely on the delivery structure
of those entities, not the broader
needs of the community. Without
appropriate strategies and infra-
structure, communities will have
little power to create meaningful,
effective partnerships with health
care systems to assist their mem-
bers in need.
Obviously, the challenges, limi-
tations, and risks of using these

22. technologies must be understood
and continuously evaluated. New
applications for health-related
purposes raise many security and
privacy concerns that require the
attention of consumer health
advocates and health policy ana-
lysts. Although the Internet re-
mains the largest venue for access-
ing health-related information and
health-monitoring tools, it is neither
ubiquitous nor a panacea.
Electronic technologies must
be more broadly and effectively
implemented to realize their po-
tential to improve health out-
comes for vulnerable populations,
lower costs, and reduce health
disparities. To advance this
promising application, we need to
devote more attention to devel-
oping creative approaches to help
people access appropriate re-
sources, devising better safe-
guards, measuring effects and
evaluating programs, and sharing
information about programs that
are working. But by exploring
how to use technology to reach
unconnected individuals, com-
munity systems and health care
providers can begin to address
the problem––and enhance the
coordination of health care for

23. millions of Americans. j
About the Authors
At the time of this study, John F. Crilly
was with the Department of Psychiatry,
University of Rochester Medical Center,
Rochester, NY, and the US Department of
Veterans Affairs, Canandaigua, NY. Robert
H. Keefe is with the School of Social
Work, State University of New York,
Buffalo. Fred Volpe is with the Drug Free
Communities Program, Substance
Abuse and Mental Health Services
Administration, Leesburg, VA.
Correspondence should be sent to Robert
H. Keefe, PhD, ACSW, Associate Professor,
School of Social Work, 685 Baldy Hall,
University at Buffalo, State University of New
York, Buffalo, NY 14260-1050 (e-mail:
[email protected]). Reprints can be
ordered at http://www.ajph.org by clicking
the ‘‘Reprints/Eprints’’ link.
This commentary was accepted August
11, 2010.
Contributors
J. F. Crilly conceptualized the article and
led the writing of the initial draft. R. H.
Keefe edited the initial draft, aided in
writing, and led the revisions. F. Volpe
outlined the strategies and provided
examples of programs that have shown
some success.

24. Acknowledgments
The authors acknowledge Diana J. Biro,
PhD, for her assistance editing the article.
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33. Inviting Patients to Read Their Doctors’ Notes: Patients and
Doctors
Look Ahead
Patient and Physician Surveys
Jan Walker, RN, MBA; Suzanne G. Leveille, PhD, RN; Long
Ngo, PhD; Elisabeth Vodicka, BA; Jonathan D. Darer, MD,
MPH;
Shireesha Dhanireddy, MD; Joann G. Elmore, MD, MPH; Henry
J. Feldman, MD; Marc J. Lichtenfeld, PhD; Natalia Oster, MPH;
James D. Ralston, MD, MPH; Stephen E. Ross, MD; and Tom
Delbanco, MD
Background: Little is known about what primary care physicians
(PCPs) and patients would expect if patients were invited to
read
their doctors’ office notes.
Objective: To explore attitudes toward potential benefits or
harms
if PCPs offered patients ready access to visit notes.
Design: The PCPs and patients completed surveys before
joining a
voluntary program that provided electronic links to doctors’
notes.
Setting: Primary care practices in 3 U.S. states.
Participants: Participating and nonparticipating PCPs and adult
pa-
tients at primary care practices in Massachusetts, Pennsylvania,
and
Washington.

34. Measurements: Doctors’ and patients’ attitudes toward and
expec-
tations of open visit notes, their ideas about the potential
benefits
and risks, and demographic characteristics.
Results: 110 of 114 participating PCPs (96%), 63 of 140
nonpar-
ticipating PCPs (45%), and 37 856 of 90 203 patients (42%)
com-
pleted surveys. Overall, 69% to 81% of participating PCPs
across
the 3 sites and 92% to 97% of patients thought open visit notes
were a good idea, compared with 16% to 33% of
nonparticipating
PCPs. Similarly, participating PCPs and patients generally
agreed
with statements about potential benefits of open visit notes,
whereas nonparticipating PCPs were less likely to agree. Among
participating PCPs, 74% to 92% anticipated improved communi-
cation and patient education, in contrast to 45% to 67% of non-
participating PCPs. More than one half of participating PCPs
(50%
to 58%) and most nonparticipating PCPs (88% to 92%) expected
that open visit notes would result in greater worry among
patients;
far fewer patients concurred (12% to 16%). Thirty-six percent
to
50% of participating PCPs and 83% to 84% of nonparticipating
PCPs anticipated more patient questions between visits. Few
PCPs
(0% to 33%) anticipated increased risk for lawsuits. Patient
enthu-
siasm extended across age, education, and health status, and

35. 22%
anticipated sharing visit notes with others, including other
doctors.
Limitations: Access to electronic patient portals is not
widespread,
and participation was limited to patients using such portals. Re-
sponse rates were higher among participating PCPs than nonpar-
ticipating PCPs; many participating PCPs had small patient
panels.
Conclusion: Among PCPs, opinions about open visit notes
varied
widely in terms of predicting the effect on their practices and
benefits for patients. In contrast, patients expressed
considerable
enthusiasm and few fears, anticipating both improved
understand-
ing and more involvement in care. Sharing visit notes has broad
implications for quality of care, privacy, and shared
accountability.
Primary Funding Source: The Robert Wood Johnson
Foundation’s
Pioneer Portfolio, Drane Family Fund, and Koplow Charitable
Foundation.
Ann Intern Med. 2011;155:811-819. www.annals.org
For author affiliations, see end of text.
Information technologies offer new ways to engage pa-tients in
their health. Providers who have adopted elec-
tronic medical records are beginning to use secure Internet
portals to offer patients online access to test results, medi-
cation lists, and other parts of those records (1– 4). How-
ever, few portals offer access to notes generated in outpa-

36. tient encounters, even though exploratory studies focusing
on chronic illnesses suggest that such access may help
patients and have little net effect on provider workflow
(5– 8).
To gain further insight into such a shift in care, we
designed and initiated OpenNotes, a research and demon-
stration project involving primary care physicians (PCPs)
and their adult patients in urban and suburban Boston,
rural Pennsylvania, and inner-city Seattle (9). We asked
PCPs whether they would volunteer for 1 year, starting in
summer 2010, to send their patients electronic invitations
to read their outpatient visit notes online and to review
these notes before the next scheduled encounter. We ex-
pected that PCPs would be wary of such a change in care,
particularly those who had been in practice for many years
and those who spend many hours in direct patient care.
We hypothesized that patients would be generally positive
about open visit notes, that highly educated and younger
patients would be particularly enthusiastic, and that many
would want to share their notes with others.
We surveyed eligible doctors and patients before the
start of the voluntary program and report here on their
See also:
Print
Editors’ Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 812
Editorial comment. . . . . . . . . . . . . . . . . . . . . . . . . . 853
Related article. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 805
Web-Only
Appendix Tables
Conversion of graphics into slides

37. IMPROVING PATIENT CARE Original Research
© 2011 American College of Physicians 811
attitudes and expectations toward electronic access to doc-
tors’ notes. Survey respondents included PCPs who volun-
teered to participate in OpenNotes, PCPs who declined to
participate, and patients cared for by both groups of PCPs
who were using the practices’ online portals to access other
information about their care (for example, test results).
METHODS
In summer 2010, patients were offered online access
to ambulatory encounter notes written by the PCPs who
volunteered to participate in OpenNotes. Before the doc-
tors’ notes were made available, we conducted online sur-
veys of patients and PCPs from the 3 study sites: 1) prac-
tices offering primary care at Beth Israel Deaconess
Medical Center (BIDMC), an urban academic health cen-
ter in Boston, Massachusetts, and at associated community
practices in and around Boston; 2) primary care sites at
Geisinger Health System (GHS), a primarily rural inte-
grated health system with 3 medical centers and 39 com-
munity practices in Pennsylvania; and 3) the adult medi-
cine and HIV clinics at Harborview Medical Center
(HMC), a county hospital in Seattle, Washington, that
largely serves indigent patients. Beth Israel Deaconess
Medical Center and GHS have well-established online pa-
tient portals (PatientSite and MyGeisinger, respectively),
with approximately 50 000 and 163 000 registered patient-
users. Before the start of the OpenNotes project, patients
used these portals to access test results, medication lists,

38. appointment schedules, prescriptions, referrals, secure elec-
tronic messaging with providers, and other information.
Coincident with the start of our project, HMC deployed
an online portal, UW Medicine e-care; previously, patients
had not had online access to information about their care.
Thus, patients at HMC who were enrolled in the interven-
tion gained access to test results and PCP visit notes for the
first time at the start of our study.
Participating PCPs were given the option of excluding
patients who, in their clinical judgment, might be put at
risk by reading their notes, and those who were excluded
were not asked to complete surveys. At BIDMC, partici-
pating PCPs excluded 158 of 11 898 portal patients; at
GHS, they excluded 139 of 10 202 portal patients. Be-
cause HMC cares for many patients with severe mental
health and substance abuse issues, PCPs at that institution
were reluctant to include many such patients in this initial
test of the program; they excluded 1023 of 3186 eligible
patients. Of the remaining eligible patients, 277 were reg-
istered for the HMC portal.
Questionnaire Design
To design surveys to assess the potential effects of open
visit notes, we examined the literature on patient and doc-
tor attitudes toward accessing medical records (8, 10, 11).
For the PCP survey, we conducted 1 focus group at
BIDMC and 1 at GHS, with a total of 14 PCPs. We
recorded the sessions, and 3 of the study investigators re-
viewed transcripts and reached consensus on common
themes. We transformed themes into survey questions ad-
dressing potential benefits, risks, and expectations about
the impact of open visit notes on their practice (documen-
tation, interactions with patients, liability, and effects on

39. patient care). We added items about doctor and practice
characteristics. We tested the survey in several iterations
and revised it according to feedback. Using paper question-
naires, we solicited comments to ascertain face validity
from 3 clinician-researchers at BIDMC. Finally, we pre-
tested the online survey with 5 PCPs to assess content and
potential technical issues.
We used parallel methods for the patient survey, be-
ginning with 5 patient focus groups involving 41 patients
at BIDMC and HMC. Investigators reached consensus
about common themes and developed questions after 1
BIDMC focus group, and they then evaluated content and
clarity by using paper questionnaires in 4 patient focus
groups at HMC after the guided discussion. Subsequently,
we obtained feedback for face validity, comprehension,
flow, and completeness from 3 participants in BIDMC
focus groups who volunteered to complete them online.
Finally, we pretested the online survey with a pilot group
of 829 participants at BIDMC and GHS to test technical
processes and completeness. Their participation did not
result in changes in the survey, and their responses are
included in the results we document, except for those from
69 patients who were cared for by one of the study
investigators.
To compare agreement between patients and PCPs,
we used the same wording for both the PCP and patient
Context
Electronic portals are beginning to provide patients with
access to portions of their health records.
Contribution

40. In this survey, most physicians who planned to participate
in a pilot program that provided patients with electronic
access to their office notes anticipated benefits to their
patients. Physicians who chose not to participate in the
pilot program more often worried about potential harms
to patients. Patients of both participating and nonpartici-
pating physicians expected overall benefits more fre-
quently than harms.
Caution
The survey was conducted among a selected group of
physicians and patients at 3 institutions and does not
reflect real-world experience.
Implication
Further study is needed to assess the benefits and harms
of patients’ access to their physicians’ office notes.
—The Editors
Original Research Inviting Patients to Read Their Doctors’
Notes
812 20 December 2011 Annals of Internal Medicine Volume 155
• Number 12 www.annals.org
surveys to address potential benefits and risks (response
options were “disagree;” “somewhat disagree;” “somewhat
agree;” “agree;” and, for patients only, “don’t know”). In
addition, we solicited patients’ thoughts about privacy,
sharing notes with others, and the effect on their doctors’
work lives. We added validated questions addressing

41. patient– doctor communication: the Perceived Efficacy of
Patient–Doctor Interactions questionnaire measured self-
confidence about communicating with doctors, and items
from the Ambulatory Care Experiences Survey measured
the quality of doctor–patient interactions (12, 13).
We also assessed patient sociodemographic character-
istics, including race, education, employment, and overall
health status; patient age and sex were obtained from ad-
ministrative data. We asked all patients the same questions,
but the introductory language differed slightly for patients
of participating versus nonparticipating PCPs.
Surveys were conducted online by using SurveyGizmo,
versions 2.0 and 3.0 (Widgix, Boulder, Colorado). Except
for questions about demographic characteristics, free-text
questions, and skip patterns, all items required a response.
Respondents could not skip individual questions but could
exit the survey at any point. Responses up to the point of
exit were used in the data analysis. Surveys were designed
to take less than 20 minutes to complete and are available
upon request.
Conducting the Surveys
At BIDMC and GHS, we sent survey invitations elec-
tronically to all participating and nonparticipating PCPs
and to their patients who were registered on the practice
portals (approximately 36% of the PCP panels at BIDMC
and 25% at GHS). We surveyed doctors first, then their
patients. We sent up to 3 reminders to PCPs via their
institutional e-mail addresses and to patients via the por-
tals’ secure messaging service. We asked participating PCPs
to complete the survey at the time of enrollment in the
study. Their patients were surveyed before notes were
opened, and patients of participating PCPs could view

42. their notes regardless of whether they responded to the
survey. We gave invitees 4 to 6 weeks to complete the
survey. All PCPs and most patients who responded com-
pleted the surveys before notes were made available to
patients.
Because of scheduling constraints at GHS, the survey
was online for a 12-day overlap when visit notes were ini-
tially made available. We estimate that less than 1% of
GHS patients who responded to the survey may have
viewed a visit note before completing the survey.
At HMC, which had no preexisting portal, we con-
tacted PCPs via their institutional e-mail addresses. Be-
cause some patients at HMC did not own computers, we
enrolled PCPs and HMC patients on a rolling basis over 4
months; inviting patients in the clinic, by mail, or by tele-
phone to join the study; and then enrolling them in per-
son. We required each HMC patient to complete a survey
in order to join the study.
We offered survey incentives in line with site policies:
BIDMC patients who completed surveys entered a raffle
for $25 gift certificates, and each PCP who completed a
survey received $50. Doctors at GHS who answered sur-
veys received $30 gift cards, and HMC patients received
$10 gift cards.
Statistical Analysis
In our descriptive analysis, we used means and SDs for
continuous variables and percentages for categorical vari-
ables. Because sample size and patient characteristics dif-
fered greatly across the sites and there were potential un-
measured confounders in the aggregated data, we did not

43. use multivariable modeling to assess the independent ef-
fects of interest, such as sex, age, education, health status,
and confidence in communication. We limit our inferences
to our study sample alone and report only descriptive sta-
tistics summarizing our findings.
For statements evaluating attitudes, we first examined
results across a 5-level agree– disagree response set. After
determining empirically that the data were suitable for do-
ing so, we combined the “agree” and “somewhat agree”
categories and the “disagree” and “somewhat disagree” cat-
egories; “don’t know” responses were retained as a separate
category. Using data from each of the 3 sites, stratified
according to whether the PCP was or was not a participant,
we calculated sample proportions of PCPs who agreed with
statements about perceived benefits, risks, and effect on
their work. Similarly, we calculated the proportions of pa-
tients who agreed with statements about potential benefits,
risks, and effect on the work lives of their PCPs by study
sites, PCP participation, and patient characteristics. Patient
responses of “don’t know” were treated as nonmissing and
were included in denominators. We performed all statisti-
cal analyses by using SAS software, version 9.2 (SAS Insti-
tute, Cary, North Carolina).
Beth Israel Deaconess Medical Center acted as the co-
ordinating center for the project; its institutional review
board approved the overall project. The institutional re-
view boards at GHS and the University of Washington
approved the implementation in their specific sites.
Role of the Funding Source
The study was funded by The Robert Wood Johnson
Foundation’s Pioneer Portfolio, the Drane Family Fund,
and the Koplow Charitable Foundation. The funding

44. sources had no role in designing or conducting the study;
analyzing the data; preparing the manuscript; or deciding
to submit the manuscript for publication.
RESULTS
Of the 173 PCPs who responded to the survey, 64%
volunteered to participate in OpenNotes (Table 1). Nearly
all participating PCPs (96%) and 45% of those who de-
Original ResearchInviting Patients to Read Their Doctors’
Notes
www.annals.org 20 December 2011 Annals of Internal Medicine
Volume 155 • Number 12 813
clined to participate completed surveys. The PCP respon-
dents were fairly distributed across the 3 sites (31% from
BIDMC, 45% from GHS, and 24% from HMC); in con-
trast, 80% of patient respondents were from GHS, 19%
from BIDMC, and less than 1% from HMC. All PCP
surveys were complete, except for one with incomplete re-
sponses about doctor and practice characteristics. Among
patients, the proportion of missing responses to most items
was very low (0.01% to 2.65% across the 3 sites). For
optional questions about demographic characteristics at the
end of the patient survey, a few more responses were miss-
ing (2.68% to 4.55% across sites).
We observed demographic and practice differences
among doctors according to study site and participation status
(Table 2). In general, respondents at HMC were younger and
worked fewer hours in direct care, whereas respondents at

45. GHS who were not participating in OpenNotes worked the
most hours in patient care. More than three quarters of GHS
doctors and more than one half of BIDMC doctors commu-
nicated electronically with patients at least daily. At HMC,
where access to electronic records was new for patients, e-mail
communication with PCPs was infrequent.
Overall, patient respondents were more likely than
nonrespondents to be women (63% vs. 59%, respectively)
and were on average 5 years older (52 years vs. 47 years).
Characteristics of patient respondents differed across the
sites (Table 3). Compared with other sites, HMC patients
were more likely to be nonwhite, male, unemployed, and
in fair or poor health (72% of HMC study patients attend
the HIV/AIDS clinic). In contrast, BIDMC patients were
more highly educated and reported better self-rated health
than those at other sites, and GHS patients were more
often female, less educated, and white.
Responding patients of participating PCPs were
slightly more likely than those of nonparticipating PCPs to
be men (GHS, 39% and 36%, respectively; BIDMC, 41%
and 39%). At BIDMC, 86% of responding patients of
Table 1. Survey Response Rates Among PCPs and Their
Patients, According to Participation in OpenNotes
Study Site All PCPs,
n
PCPs Who
Submitted a
Survey,
n (%)
All

46. Portal
Patients,
n
Patients
Who
Submitted a
Survey,
n (%)
BIDMC
Participant 42 42 (100) 11 740 4545 (39)
Nonparticipant 22 12 (55) 6631 2633 (40)
GHS
Participant 27 26 (96) 10 063 4226 (42)
Nonparticipant 118 51 (43) 61 492 26 180 (43)
HMC
Participant 45 42 (93) –† 272
Nonparticipant* – – – –
Total
Participant 114 110 (96) 22 080 9043 (41)
Nonparticipant 140 63 (45) 68 123 28 813 (42)
BIDMC � Beth Israel Deaconess Medical Center; GHS �
Geisinger Health
System; HMC � Harborview Medical Center; PCP � primary
care physician.
* We did not survey nonparticipating PCPs or patients at HMC.
† Of 2163 eligible patients at HMC who were not excluded by
their PCP owing
to concerns about risk resulting from reading their notes, 277
registered for the
HMC portal (which was open only to study participants).

47. Table 2. Characteristics of PCPs Who Responded to the Survey,
by Study Site
Characteristic BIDMC GHS HMC†
Participating PCPs
(n � 42), %
Nonparticipating PCPs
(n � 12), %
Participating PCPs
(n � 26*), %
Nonparticipating PCPs
(n � 51), %
Participating PCPs
(n � 42), %
Age
30–39 y 26 0 23 26 45
40–49 y 38 50 27 34 38
50–59 y 26 42 46 32 17
�60 y 10 8 4 8 0
Women 50 42 23 42 62
Direct care hours per week
�115 43 42 8 2 73
15–35 45 42 46 26 19
36–62 12 17 46 72 7
How often PCPs communicate with patients
by e-mail

48. Never 4 0 0 4 17
Less than once weekly 7 8 4 10 60
More than once weekly, but not daily 36 25 15 10 19
More than once daily 52 67 81 76 5
BIDMC � Beth Israel Deaconess Medical Center; GHS �
Geisinger Health System; HMC � Harborview Medical Center;
PCP � primary care physician.
* Data were missing for 1 PCP survey respondent.
† Only participating PCPs completed the survey at HMC.
Original Research Inviting Patients to Read Their Doctors’
Notes
814 20 December 2011 Annals of Internal Medicine Volume 155
• Number 12 www.annals.org
participating PCPs were white, compared with 90% of pa-
tients of nonparticipating PCPs. We did not observe
meaningful differences in other patient characteristics at
BIDMC or GHS according to the participation status of
their PCPs (data not shown). At HMC, 76% of participat-
ing patients were men, compared with 65% of eligible
patients who did not participate in either OpenNotes or
the survey.
The PCP respondents who declined participation in
the project were much more pessimistic about open visit
notes in general than were participating PCPs (Figure 1
and Appendix Table 1, available at www.annals.org). Re-
gardless of their PCPs’ participation status, responding
patients were highly positive about open visit notes. For
example, only 16% of nonparticipating PCPs at GHS

49. thought open visit notes were a good idea, compared with
81% of participating PCPs and more than 90% of patients
(Figure 1). At BIDMC, 33% of nonparticipating PCPs
agreed that open visit notes were a good idea, compared
with 69% of participating PCPs and more than 90% of
patients. Most participating PCPs at BIDMC and GHS
agreed with statements about potential patient benefits;
nonparticipating PCPs were far less likely to agree. At
HMC, where all survey respondents were participating in
OpenNotes, PCPs and patients were positive about these
potential benefits (57% to 93% and 71% to 97%, respec-
tively, agreed or somewhat agreed with each of the benefit
statements). In contrast, 43% to 92% of PCPs across the
study sites were far more likely to agree with statements
about potential risks for worrying or confusing patients
than were the patients themselves (7% to 16%) (Figure 2).
Table 4 shows PCP expectations about the effect of
open visit notes on their practices. Across the study sites,
71% to 77% of participating PCPs thought that patient
satisfaction would improve, compared with 29% to 58%
of nonparticipating PCPs. In addition, 36% to 62% of
participating PCPs and 18% to 33% of nonparticipating
PCPs thought that patient care would be safer. Somewhat
less than one half of participating PCPs and more than
80% of nonparticipating PCPs anticipated spending more
time addressing patient questions outside of visits; 27% to
40% of participating PCPs and 61% to 75% of nonpartic-
ipating PCPs believed that they would be less candid in
documentation, whereas 33% to 50% of participating
PCPs and 58% to 65% of nonparticipating PCPs pre-
dicted spending more time writing or editing their notes.
Many nonparticipating PCPs believed that they would
change the way they wrote about mental health (67% to
69%) and substance abuse (59% to 75%), compared with
27% to 55% and 31% to 43%, respectively, of participat-

50. ing PCPs.
Older patients and those with less education were at
least as likely as those who were younger and better edu-
cated to agree with statements about potential benefits
(Appendix Table 2, available at www.annals.org). Overall,
there were few differences among patients who responded
to the survey in terms of demographic characteristics and
self-reported health status.
Thirty-five percent of patients were concerned about
their privacy, 22% anticipated sharing their notes with
others, and 29% were undecided. Of those who foresaw
sharing their notes, 93% anticipated doing so with a family
member or relative, 36% with another doctor, 23% with a
friend, and 23% with a nurse or other health professional.
The findings regarding sharing notes derive from incom-
plete data; a random software error resulted in 13 007
GHS responses with missing information. However, we
compared the characteristics of the GHS patients for
whom data were missing with those of the 17 399 GHS
patients for whom data were complete and found no ma-
terial differences between the 2 groups.
DISCUSSION
Although we observed striking differences between
doctor and patient attitudes toward sharing visit notes, the
doctors who participated in our project were more optimis-
tic about the tangible benefits for patients than we postu-
lated. They predicted improvements in both patient safety
and satisfaction and believed that patients would be better
prepared for visits, would feel more in control of their
health care, and would take better care of themselves.
However, many participating PCPs and most who declined

51. Table 3. Characteristics of Patients Who Responded to the
Survey, by Study Site
Characteristic BIDMC
(n � 7178)
GHS
(n � 30 406)
HMC
(n � 272)
Age, y
Mean (SD) 53 (13) 52 (14) 49 (11)
Median 54 53 49
Women, % 60 64 24
Race, %
White 87 96 63
Black or African American 3 1 19
Other or multiracial 10 3 18
Education, %
High school/GED or less 5 33 27
Some college 17 32 41
College graduate 24 16 14
Postcollege 54 20 17
Employed, % 74 63 39
Self-rated fair or poor health
status, %
10 17 27

52. Ambulatory Care Experiences
Survey score*
Mean (SD) 5 (1) 5 (1) 5 (1)
Median 5.4 5.4 5.6
Perceived Efficacy of Patient–Doctor
Interactions score†
Mean (SD) 41 (7) 40 (8) 43 (7)
Median 42 42 46
BIDMC � Beth Israel Deaconess Medical Center; GHS �
Geisinger Health
System; HMC � Harborview Medical Center.
* Patient report of patient– doctor communication; range of 1 to
6, with a higher
score indicating better communication.
† Patient level of confidence about communicating with his or
her physician;
range of 5 to 50, with a higher score indicating more
confidence.
Original ResearchInviting Patients to Read Their Doctors’
Notes
www.annals.org 20 December 2011 Annals of Internal Medicine
Volume 155 • Number 12 815
participation anticipated lengthier visits and increased de-
mands on their time between visits. Moreover, many doc-
tors declining participation worried about frightening and
confusing patients; recording their thoughts candidly; and

53. writing about such issues as mental health, substance
abuse, cancer, and obesity. Overall, PCPs who declined to
participate predicted that open visit notes would lead to
negative consequences for the way they practiced and
would have little positive effect on their patients.
The enthusiasm of patients exceeded our expectations;
most of them were overwhelmingly positive about the
prospect of reading visit notes, regardless of demographic
or health characteristics. In sharp contrast to the expecta-
tions of their PCPs, fewer than 1 in 6 patients was con-
cerned about being worried or confused by reading their
notes. Moreover, contrary to our hypotheses, we did not
find that younger or more highly educated patients who
responded to our survey were more likely to agree with the
benefits than those who were older or had less education. It
was also striking that many patients would consider sharing
their notes with other people, including other doctors.
Our data suggest that almost all patients, including
those who report poor health, anticipate that open visit
notes may help them, a finding concordant with prior re-
search using patient Web sites for collaborative long-term
care (5–7, 14, 15). Whereas studies assessing Web site
adoption suggest that patients with low to modest educa-
tion have been less likely to use online services, patients
with modest education in our study were just as likely as
others to envision benefiting from open visit notes (16 –
18). Perhaps all patients would benefit from such an op-
portunity to review and understand information from the
visit, using notes as an opportunity to grasp more thor-
oughly what the doctor recommends.
The finding that one half of the patients contemplated
sharing their visit notes with others, including other doc-

54. tors, could have many consequences. Confidentiality may
be the hallmark of traditional doctor–patient interaction,
but open visit notes put the patient in control of whether
the note will remain private. Will sharing notes help pa-
tients engage families, friends, and caregivers more fully
and effectively? If patients send notes to other health pro-
fessionals, will that foster improved communication or act
as a mechanism for seeking second or third opinions? How
might that affect patients’ trust in their PCP? The impli-
cations extend further: One third of the patients in our
study worried about the effect of open visit notes on pri-
vacy. How would such fear interact with desire to share
Figure 1. Proportion of PCPs and patients who agreed or
somewhat agreed with statements about the potential benefits of
open
visit notes for patients, by study site.
Participating
Nonparticipating
B
ID
M
C
G
H
S
H
M
C

55. Agree or Somewhat Agree, %
Good idea
0 20 40 60 80 100 0 20 40 60 80 100
In control
Prepared
Remember plan
Self-care
Take medication
Understand
Good idea
In control
Prepared
Remember plan
Self-care
Take medication
Understand
Good idea
In control
Prepared
Remember plan
Self-care
Take medication
Understand

56. PCP Patient
Appendix Tables 1 and 2 (available at www.annals.org) show
the wording of the questions and exact values. BIDMC � Beth
Israel Deaconess Medical
Center; GHS � Geisinger Health System; HMC � Harborview
Medical Center; PCP � primary care physician.
Original Research Inviting Patients to Read Their Doctors’
Notes
816 20 December 2011 Annals of Internal Medicine Volume 155
• Number 12 www.annals.org
doctors’ notes with others? As debate about “open disclo-
sure” continues, how might transparent notes affect our
litigious society? What information will land on social me-
dia sites (such as Facebook), and who will forward it to
whom (19)?
The doctors in our survey, particularly those who de-
clined to participate in OpenNotes, were far more worried
about the downsides for patients than were the patients
themselves. Are patients overly optimistic about how help-
ful the notes will be? Or do doctors underestimate their
resourcefulness and resilience when they encounter arcane
or worrisome language? OpenNotes has gone live since we
collected these baseline data, and unanticipated conse-
quences are emerging, with doctors and patients differing
at times in assigning benefit or harm to specific by-
products of transparency. For example, as they learn what
sort of information doctors write down, patients report
withholding information that they would rather not have
recorded. Patients may spot mistakes and help doctors

57. avoid potential errors, but they may also question a doc-
tor’s competence or the veracity of what is documented. As
language, shape, or content of notes shift, who will declare
such change a benefit or liability?
Our study has limitations. First, all of the study sites
have electronic medical records and patient portals, cir-
cumstances that differ from the average primary care prac-
tice and patient experience. Second, although the number
of patient surveys is large, they were drawn from practices
in only 3 regions and include only patients who had reg-
istered to use portals. Third, most of the survey questions
were designed specifically for our project, and although
these questions have face validity and were developed by
drawing on literature, focus groups, individual interviews,
and the experience of our study investigators, we did not
perform psychometric testing to evaluate reliability or fur-
ther validity. Fourth, because survey response rates were far
lower among PCPs who declined to participate in Open-
Notes than those who participated, our results may mis-
represent the views of nonparticipating doctors. Fifth,
many of the doctor respondents practice in academic set-
tings and manage smaller patient panels than most practi-
tioners. Sixth, patients who dislike or are indifferent to the
concept of open visit notes may have been less likely to
respond to the survey. Seventh, a larger proportion of pa-
tients at HMC were not surveyed owing to doctors’ con-
cerns about potential harm from reviewing their notes. Fi-
nally, expectations may differ from actual experience: We
anticipate that reports from doctors and patients at the
close of the 1-year study period will differ from their
predictions.
Figure 2. Proportion of PCPs and patients who agreed or
somewhat agreed with statements about the potential harms of

58. open
visit notes to patients, by study site.
Participating
Nonparticipating
B
ID
M
C
G
H
S
H
M
C
Agree or Somewhat Agree, %
PCP Patient
0 20 40 60 80 100 0 20 40 60 80 100
Confusing
Worry
Confusing
Worry

59. Confusing
Worry
Appendix Tables 1 and 2 (available at www.annals.org) show
the wording of the questions and exact values. BIDMC � Beth
Israel Deaconess Medical
Center; GHS � Geisinger Health System; HMC � Harborview
Medical Center; PCP � primary care physician.
Original ResearchInviting Patients to Read Their Doctors’
Notes
www.annals.org 20 December 2011 Annals of Internal Medicine
Volume 155 • Number 12 817
Table 4 vividly demonstrates that doctors seemed re-
markably divided in many of their expectations and the
issues we highlight have important consequences for both
their work life and quality of care. All U.S. patients have
the right to review their visit notes if they so desire, and the
spread of electronic records will inevitably ensure easier
access. Whether open visit notes bring doctors and patients
closer together, tend to drive them apart, or have little
effect on the patient– doctor relationship remains to be
seen. One might think of open visit notes as analogous to
a new medicine: Its goal is to improve the process and
outcome of care for those who use it, but as with every
therapy, some may be harmed by it and some may choose
not to use it.
The costs of instituting electronic medical records
with patient portals are high. Nevertheless, electronic med-
ical records, online portals that offer patients information

60. about their care, and open visit notes will almost certainly
proliferate, and as these features become more established,
their price will decrease. Finally, as with new drug thera-
pies, the “dose” and “formulation” of open notes will need
to be determined over time. It will take considerable fur-
ther analysis and experimentation to understand many of
their implications and consequences.
From Beth Israel Deaconess Medical Center, Harvard Medical
School,
and College of Nursing and Health Sciences, University of
Massachu-
setts, Boston, Massachusetts; Geisinger Health System,
Danville, Penn-
sylvania; Harborview Medical Center, University of Washington
School
of Medicine, and Group Health Research Institute, Group Health
Co-
operative, Seattle, Washington; and University of Colorado
Health Sci-
ences Center, Aurora, Colorado.
Grant Support: By The Robert Wood Johnson Foundation’s
Pioneer
Portfolio (grant 65921 to Ms. Walker and Dr. Delbanco), the
Drane
Family Fund, and the Koplow Charitable Foundation.
Potential Conflicts of Interest: Disclosures can be viewed at
www.acponline
.org/authors/icmje/ConflictOfInterestForms.do?msNum�M11-
0962.
Reproducible Research Statement: Study protocol, statistical
code, and
data set: Not available.

61. Corresponding Author: Jan Walker, RN, MBA, Beth Israel
Deaconess
Medical Center, Harvard Medical School, 330 Brookline
Avenue, Bos-
ton, MA 02215; e-mail, [email protected]
Current author addresses and author contributions are available
at www
.annals.org.
Table 4. PCP Survey Respondents’ Expectations of the Impact
of Open Visit Notes on Their Practice
Expectation BIDMC GHS HMC*
Participating PCPs
(n � 42), %
Nonparticipating PCPs
(n � 12), %
Participating PCPs
(n � 26), %
Nonparticipating PCPs
(n � 51), %
Participating PCPs
(n � 42), %
Visits will take significantly longer† 26 58 27 71 24
Will spend more time addressing patient
questions outside of visits†
50 83 46 84 36

62. Patients who read their notes will be
offended†
33 58 8 45 29
Will be less candid in documentation† 36 75 27 61 40
Will order more tests and/or referrals† 0 8 4 20 2
Will spend more time writing/dictating/editing
my notes†
50 58 35 65 33
I will change the way I address these topics in
my notes (yes response)
Cancer/possibility of cancer 36 58 15 49 29
Mental health 45 67 27 69 55
Substance abuse 43 75 31 59 43
Overweight/obesity 19 58 15 47 21
Process measures of quality will improve
(yes response)
31 8 46 27 26
Outcome measures of quality will improve
(yes response)
24 8 50 24 26
Medical care will be delivered more efficiently
(yes response)
24 0 27 14 33
Patient satisfaction will improve (yes response) 71 58 77 29 76

63. Patient care will be safer (yes response) 62 33 58 18 36
Risk for lawsuits will decrease 7 0 12 4 10
Risk for lawsuits will not change 93 92 77 63 79
Risk for lawsuits will increase 0 8 12 33 12
Notes can be useful for patient communication
and education (agree or somewhat agree)
74 67 92 45 79
BIDMC � Beth Israel Deaconess Medical Center; GHS �
Geisinger Health System; HMC � Harborview Medical Center;
PCP � primary care physician.
* Only participating PCPs completed surveys at HMC.
† Percentage of PCPs responding that they were moderately or
very concerned, or so concerned that they do not want open
notes.
Original Research Inviting Patients to Read Their Doctors’
Notes
818 20 December 2011 Annals of Internal Medicine Volume 155
• Number 12 www.annals.org
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ACP CHAPTER MEETINGS
For information on upcoming ACP chapter meetings, including
scientific
programs and registration forms, please visit
www.acponline.org
/meetings/chapter.
Original ResearchInviting Patients to Read Their Doctors’
Notes
www.annals.org 20 December 2011 Annals of Internal Medicine
Volume 155 • Number 12 819

67. Current Author Addresses: Ms. Walker and Drs. Ngo, Feldman,
and
Delbanco: Beth Israel Deaconess Medical Center, Harvard
Medical
School, 330 Brookline Avenue, Boston, MA 02215.
Dr. Leveille: College of Nursing and Health Sciences,
University of Mas-
sachusetts Boston, 100 Morrissey Boulevard, Boston, MA
02125.
Ms. Vodicka, Drs. Dhanireddy and Elmore, and Ms. Oster:
Harborview
Medical Center, University of Washington School of Medicine,
325
Ninth Avenue, Seattle, WA 98104.
Drs. Darer and Lichtenfeld: Geisinger Health System, 100 North
Acad-
emy Avenue, Danville, PA 17822.
Dr. Ralston: Group Health Research Institute, Group Health
Coopera-
tive, 1730 Minor Avenue, Suite 1600, Seattle, WA 98101.
Dr. Ross: University of Colorado Health Sciences Center, 12631
East
17th Avenue, Aurora, CO 80045.
Author Contributions: Conception and design: J. Walker, S.G.
Leveille,
J.D. Darer, J.G. Elmore, H.J. Feldman, J.D. Ralston, S.E. Ross,
T.
Delbanco.
Analysis and interpretation of the data: J. Walker, S.G.
Leveille, L. Ngo,
J.G. Elmore, J.D. Ralston, S.E. Ross, T. Delbanco.
Drafting of the article: J. Walker, S.G. Leveille, L. Ngo, J.D.
Ralston,
S.E. Ross, T. Delbanco.

68. Critical revision of the article for important intellectual content:
J.
Walker, S.G. Leveille, L. Ngo, E. Vodicka, J.G. Elmore, J.D.
Ralston,
S.E. Ross, T. Delbanco.
Final approval of the article: J. Walker, S.G. Leveille, L. Ngo,
E. Vod-
icka, J.D. Darer, S. Dhanireddy, J.G. Elmore, H.J. Feldman,
M.J. Lich-
tenfeld, N. Oster, J.D. Ralston, S.E. Ross, T. Delbanco.
Provision of study materials or patients: J. Walker, S.G.
Leveille, E.
Vodicka, J.D. Darer, S. Dhanireddy, J.G. Elmore, M.J.
Lichtenfeld, N.
Oster, J.D. Ralston, S.E. Ross, T. Delbanco.
Statistical expertise: S.G. Leveille, L. Ngo.
Obtaining of funding: J. Walker, T. Delbanco.
Administrative, technical, or logistic support: E. Vodicka, H.J.
Feldman,
M.J. Lichtenfeld, N. Oster.
Collection and assembly of data: J. Walker, S.G. Leveille, E.
Vodicka,
H.J. Feldman, M.J. Lichtenfeld, N. Oster.
Appendix Table 1. Proportion of PCPs Who Agreed or
Somewhat Agreed With Statements About the Potential Benefits
and Risks
of Open Visit Notes, by Participation Status
Statement BIDMC GHS HMC*
Participating PCPs
(n � 42), %
Nonparticipating PCPs
(n � 12), %

69. Participating PCPs
(n � 26), %
Nonparticipating PCPs
(n � 51), %
Participating PCPs
(n � 42), %
Making notes available is a good idea 69 33 81 16 79
Among my patients who read their visit notes,
a majority will:
Feel more in control of their health care 93 50 88 59 93
Be better prepared for visits 86 33 73 49 81
Better remember the plan for their care 95 67 92 75 83
Take better care of themselves 67 17 77 31 57
Be more likely to take medications as
prescribed
69 25 85 49 57
Better understand their health and medical
conditions
88 58 88 47 79
Find the notes more confusing than helpful 48 67 54 84 43
Worry more 50 92 58 88 45
BIDMC � Beth Israel Deaconess Medical Center; GHS �
Geisinger Health System; HMC � Harborview Medical Center;
PCP � primary care physician.
* Only participating PCPs completed surveys at HMC.

70. IMPROVING PATIENT CARE
www.annals.org 20 December 2011 Annals of Internal Medicine
Volume 155 • Number 12 W-257
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127. it
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W-258 20 December 2011 Annals of Internal Medicine Volume
155 • Number 12 www.annals.org
Copyright © American College of Physicians 2011.

128. “Electronic Health Records and Data Ownership”
Program Transcript
ROY SIMPSON: Let's talk about ownership of patient data.
Who owns it? We all
think we own our data, when in actuality, we probably have
already sold our data
before we even entered the system.
So let's look at who really owns the data. We may own the
interpretation of those
things assigned to our name, but the data without the name may
not be owned
by you. And let me give you a clear example.
When you go into a hospital, you automatically assign your data
over to your
insurance care. And if you don't want to pay, ie you don't want
your insurance to
pay, and you're willing to pay out of pocket, then you may have

129. another debate.
You may own your data.
But usually, most people when they enter into a facility, the
insurance company
then has rights to that data. I think we have to look at terms of
ownership, rights
to data, rights to privacy, HIPAA regulations, all types of things
because I think
the term ownership has different connotations out there. When
you may still have
your own data, but you may not own your data, it may be your
own, and
someone else may own it. And you may own parts of it.
But what you want to always be mindful of is privacy and
confidentiality, which
are two different terms. And they're two different legal terms.
But we want to be
sure that we maintain the patient's privacy because it's really
key that they have
trust in you as a relationship provider, as a nurse, a doctor,
whatever, the school
therapist. They have to have that trust.
So they've got to feel like that they're not going to be
disadvantaged because of
someone using their data or having access to their data. So we
have a lot of
terms all swirling around ownership of data. And I think that's
where we get
confused.
It's not ownership as in, I own a car. It's an ownership of a
concept. And the
conceptual ownership has to do with the data and how it's

130. attached to each other
to your name in order to maintain your privacy and
confidentiality.
In patient-centered care, we begin to see that patients want to
know about their
quality. Patients want to know what it is you're collecting on
me, and what are the
things that I need to be keeping up with. Because they are a
partner and
colleague in the care of their own self.
And as we all look at taking care of ourselves more and more
and more as
resources become less and less, it's important that those data
elements are
© 2012 Laureate Education, Inc. 1

131. designed for the consumer or the patient as well to advance the
quality and the
organization. When we look at quality of care, the first thing
that comes to my
mind is data. And that's the role of the informatician.
And when we look at Chief Quality Officers or Chief Patient
Safety Officers, there
is no way that they can function without having good, sound
systems to give
them the data they need to work on. Because they can't improve
if they don't
have something that they didn't measure. So we automatically
know, as quality
organizations, that we have to achieve improvement processes.
And those improvement processes are based on data. And as the
data comes in,
we have to also recognize that it is a life cycle and that, as the
data comes in, it
may create new opportunities to have new data, and it may
create an opportunity
to remove data, and it may create an opportunity to have an
existence of a data
element that you never thought about in your life. And so the
influence it has on
quality gives a design for a system to be at the lowest level of
data point that one
could use the data.

132. It doesn't matter whether you're a nurse, a physician, or you're
in laboratory
science or in radiological services. You must be able to provide
the end user with
reports that will help them improve their quality. Because you
have to improve
the quality at the individual level to get the organization's
cultural level to change
and move with quality.
And the exciting part of an informatician's role is you get to
help design all of
those data structures and all of those reports that help drive
quality for patient
care. And it's important. And I think one of the other things that
we see as nurse
informaticians that has begun to change is in patient-centered
care.
In talking about quality care, one of the components we have to
look at is
personal health records. And as we look at personal health
records, we have to
remember that the data may be used in a different way than we
as clinicians use
that data. So we have to make sure that when a personal health
record is
designed and reviewed, that it too focuses on quality, a
structure, process, and
measurable outcome.
And when we try to teach our patients, and we help them
understand quality
care, it's not always about motel services. It's not was the room
warm or the
room cold. But there were other components to the care.

133. Were there pressure ulcers upon admission or readmission, or
did you develop
pressure ulcers while you were in the hospital? These are
significant quality
indicators that consumers are going to be a part of because
they're a part of that
care in order to resolve the issues and have better outcomes. So
when we look
at consumer health, we begin to look at consumers taking more
and more
responsibility for their health as the dollars decrease for health
care.
© 2012 Laureate Education, Inc. 2
One of the things that I always tell people, which is kind of
interesting, if you want
your blood sugar done at home, you can do your blood sugar. So
why not do an
SMA 12 at home? Why not know your own cholesterol at home?

134. And if you know all these laboratory results, what are you going
to do with them
as a consumer? Do you make decisions to go see your nurse
practitioner or your
other providers? Do you make a decision to go look at over the
counter
medications?
I mean, we're going to see consumers take a lot more
responsibility because of
being informatics-centric. They're going to have data. They're
going to have
ability to get to data that they never had before.
So you can begin to see more and more medical devices
becoming consumer
appliances over time. I mean, you can go in right now, if you
want a glucometer,
you just buy it. You don't have to have all these prescriptions
for it. So we're
going to see more and more devices.
I wouldn't be surprised if we don't see EKG devices at home,
where people just
go and buy and run their own EKGs one day because we can see
those
becoming more and more consumer-oriented. And when they
are, they become
consumer appliances. And that's the difference between a
medical device and an
appliance.
© 2012 Laureate Education, Inc. 3

135. 64 journal of law, medicine & ethics
Dreams and
Nightmares:
Practical and
Ethical Issues
for Patients and
Physicians Using
Personal Health
Records
Matthew Wynia and Kyle Dunn
Introduction and Definitions
The term “Electronic Health Records” (EHR) means
something different to each of the stakeholders in
health care, but it always seems to carry a degree of
emotional baggage. Increasingly, EHRs are advert-
ized as a nearly unmitigated good that will transform
medical care, improve safety and efficiency, allow
better patient engagement, and open the door to an
era of cheap, effective, timely, and patient-centered
care.1 Indeed, for some EHR proponents the ben-
efits of adopting them are so obvious that adoption
has become an end in itself.2 But for others — and
especially for a number of skeptical practitioners and
patients — EHR is a code word that portends the cor-
porate transformation of health care delivery, the loss
of patient privacy, the demand that patients bear more
responsibility in health care, and the unreflective take-
over of the health care system by people who do not
understand medical care or how health care relation-
ships unfold.3
For our purposes, we will consider EHRs impar-

136. tially, as a set of tools that can be used for a variety of
purposes. We define EHRs broadly as any electronic
means of storing and transferring health-related
information. We exclude from this definition the use
of the telephone and fax, arguably precursors to the
electronic means of data exchange now available. Like
face-to-face and paper-based interactions, the tele-
phone and fax are generally limited to two people.
Breaches of phone line security, while possible and
perhaps even frequent, are unlikely to affect thou-
sands of people at once.
In this paper, we examine the development of a new
set of EHR tools, Personal Health Records (PHRs).
PHRs may be variously defined (Table I) and have sev-
eral potential functional and payment models (Table
II), but the general aim of all PHRs is to increase
patients’ access to and sense of ownership over their
health care information. According to the Markle
Foundation, the advent of PHRs “represents a transi-
tion from a patient record that is physician-centered
to one that is patient-centered, prospective, interac-
Matthew Wynia, M.D., M.P.H., is the Director of the In-
stitute for Ethics at the American Medical Association and a
Clinical Assistant Professor at the University of Chicago. He
received his M.D. from the Oregon Health and Science Univer-
sity in Portland, Oregon and his M.P.H. from Harvard Uni-
versity School of Public Health in Boston, MA. Kyle Dunn,
M.H.S., was a Research Assistant at the Institute for Ethics
at the American Medical Association and is now a Ph.D. can-
didate in the Department of Health Policy and Management
at the Johns Hopkins Bloomberg School of Public Health. He
received a B.S. in Molecular, Cellular and Developmental Bi-
ology from Yale College and an M.H.S. in Health Policy from
Johns Hopkins University.

137. tive, and complete.”4 It is the basic desire to increase
patient engagement that makes PHRs so alluring, so
promising, and so threatening at the same time.
We will explore some of the core functions of PHRs,
the degree to which different stakeholders believe that
PHRs will be useful in serving these functions, and
some practical barriers to adoption that PHR propo-
nents must face. Although many of these barriers have
been recognized for some time, and in certain cases
solutions have been proposed, adoption of PHRs by
patients and physicians remains achingly slow. This
fact raises the possibility that practical barriers might
not represent the only important roadblocks. Whereas
stumbling blocks can be technical, logistical, or finan-
cial,5 it is our hypothesis that these practical barriers
reflect underlying questions and concerns about a few
core ethical issues — most notably privacy, equity, effi-
ciency, integrity, and accountability — that must be
addressed squarely for PHRs to come into widespread
and effective use.
Interest in PHRs
Purchasers and Policy Makers
Although experts have questioned whether PHRs are
“the people’s choice”6 and whether consumers or cli-
nicians will be motivated to use them,7 two groups of
health care stakeholders are almost uniformly in favor
of PHRs: purchasers and policy makers.
Purchasers face the challenge of reigning in health
care costs while preserving or improving quality of

138. care to ensure optimal worker productivity. As the cost
of health insurance rises, many of the largest employ-
the effects of health information technology on the physician-
patient relationship • spring 2010 65
Wynia and Dunn
America’s Health Insurance
Plans (AHIP):
The industry-model personal health record is a private, secure,
Web-based tool main-
tained by an insurer that contains claims and administrative
information. PHRs may
also include information that is entered by consumers
themselves, as well as data from
other sources such as pharmacies, labs, and care providers.
PHRs enable individual
patients and their designated caregivers to view and manage
health information and
play a greater role in their own health care. PHRs are distinct
from electronic health
records, which providers use to store and manage detailed
clinical information. (2006)
American Health Information
Management Association
(AHIMA), American Medical
Informatics Association (AMIA):
The PHR is a tool for collecting, tracking and sharing
important, up-to-date informa-
tion about an individual’s health or the health of someone in
their care. (2007)

139. Healthcare Information and
Management Systems Society
(HIMSS):
An electronic Personal Health Record (ePHR) is a universally
accessible, layperson com-
prehensible, lifelong tool for managing relevant health
information, promoting health
maintenance and assisting with chronic disease management via
an interactive, common
data set of electronic health information and e-health tools. The
ePHR is owned, man-
aged, and shared by the individual or his or her legal proxy(s)
and must be secure to
protect the privacy and confidentiality of the health information
it contains. It is not a
legal record unless so defined and is subject to various legal
limitations. (2007)
U.S. Department of Health and
Human Services (HHS):
A personal health record is the collection of information about
an individual’s health
and health care, stored in electronic format. A personal health
record system refers to
the addition of computerized tools that help an individual
understand and manage the
information contained in the PHR. (2006)
Markle Foundation:
The PHR is an electronic application through which individuals
can access, manage and
share their health information, and that of others for whom they
are authorized, in a
private, secure and confidential environment. (2003)

140. National Alliance for Health
Information Technology
(NAHIT):
An electronic record of health-related information on an
individual that conforms to
nationally recognized interoperability standards and that can be
drawn from multiple
sources while being managed, shared and controlled by the
individual. (2008)
Table I
PHR Definitions
Sources: (1) AHIP.org, (2) AMIA.org, (3) HIMSS.org, (4)
NCVHS.HHS.org, (5) Connectingforhealth.org, (6) NAHIT.org
66 journal of law, medicine & ethics
S Y M P O S I U M
ers in the United States are becoming stakeholders in
PHR technologies. Wal-Mart, AT&T, BP America, and
Intel Corporation are members of the Dossia Founders
Group, a consortium of businesses that aims to provide
PHRs to their employees.8 At the moment, employee
participation in the Dossia initiative is voluntary, but
other purchasers are beginning to incentivize PHR use
through discounted products and services.9 Employ-
ers can match PHRs to health risk assessment results,
which then serve as a funnel into disease prevention
programs,10 hoping that investments in PHRs will be
returned in health care savings and improved work-

141. force productivity, though data to substantiate these
hopes are scarce. Some cite increases in employee
health awareness and participation in wellness pro-
grams as early measures of success.11
Policy makers generally share purchasers’ optimism
about PHRs. Even more so than for employers, per-
haps, the promise of PHRs for federal and state policy
makers is wrapped up in the promise of EHRs in gen-
eral: namely, the expectation that they can bring about
radical improvements in efficiency and quality of care.
A 2008 study by the Center for Information Technology
Leadership projects that the U.S. could save as much as
$21 billion a year if 80 percent of the population were
to use PHRs.12 President Barack Obama embraced this
hope with a “sweeping and optimistic” plan to promote
health IT,13 including almost $20 billion in various
provisions of the 2009 economic stimulus bill to sup-
port implementation of EHRs and targeting the year
2014 for completion of a nationwide electronic medical
record system14 (though David Blumenthal, National
Coordinator for Health Information Technology, has
suggested pushing this deadline back).15 A report by
the National Committee on Vital and Health Statis-
tics (NCVHS) credits PHR systems with more than 30
benefits, including the ability to strengthen disease pre-
vention, improve population health, and expand health
education opportunities.16 The Centers for Medicare
and Medicaid Services (CMS) has instituted a PHR
pilot project in South Carolina, where patients will have
the opportunity to operate PHRs populated by their
Medicare claims data, with more such experiments
planned.17 Predicting expanding use of PHRs, policy
makers have also suggested that PHR data could ben-
efit research in biomedical science and public health.18