Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 115
5
Patients’ and Families’ Use of Health IT:
Concerns About Safety
While much of the focus of this report is on health IT products that
are intended to support clinicians and health care delivery organizations,
health IT products are also being developed to engage and support patients
in health-related decision making and management of their own personal
health information. This chapter discusses a few of these tools, which are
often seen as supporting patient engagement and the relationship, if any,
between use of these tools and patient safety.
PATIENT-CENTERED CARE AND THE ROLE OF HEALTH IT
Patient-centered care, and patient and family engagement in health
care, has been a growing priority in national health policy discussions. The
Institute of Medicine (IOM) identified patient-centeredness as one of the six
aims of quality health care (IOM, 2001). Federal and private-sector agents
have echoed this patient-centered focus in several recent policy and position
statements. The National Quality Forum’s National Priorities Partnership,
for example, has called for care that is both patient-centered and engages
patients and their families (NQF, 2011), and the Department of Health
and Human Services’ National Quality Strategy declared as a priority “that
each person and family is engaged as partners in their care” (HHS, 2011).
More recently the discussion also has focused on the role that information
technology can play in achieving some patient-engagement goals. In its
2010 report, the President’s Council of Advisors on Science and Technol-
ogy asserted that health information technology “can help patients become
more involved in their own care, which is especially important in managing
115
OCR for page 116
116 HEALTH IT AND PATIENT SAFETY
chronic conditions” (PCAST, 2010). Consistent with this, the Office of the
National Coordinator for Health Information Technology (ONC) included
a goal of “empower[ing] individuals with health IT to improve their health
and the health care system” in its draft federal health IT strategic plan
(ONC, 2011) and has included this goal in the criteria for its meaningful
use program.
Over time, discussions of patient or family engagement in health care
have tended to revolve around three topics:
1. Patients’ access to their own personal health data in electronic
formats (personal health information management);
2. Patients’ access to evidence-based information about their medical
conditions, treatment options, and health-promoting activities and
behaviors (more than 80 percent of Internet users in the United
States search for health information online (Pew Research Center,
2011); and
3. Effective communication between a patient (and family or care-
giver) and health care providers and the health care delivery system
so as to improve safety and quality.
Such discussions center on the belief that patients who have the tools
to manage their own health care data, who have ready access to reliable
health-related information, and/or who can communicate more effectively
with health professionals will be capable of making more informed deci-
sions and will experience better outcomes. Recent trends with personal
health records (PHRs) indicate that patient engagement tools may have a
role in allowing patients and their families to become more involved in their
care. Therefore, the impact of the growing use of patient engagement tools
on patient safety should be considered.
GROWTH OF CONSUMER HEALTH IT
There has been rapid growth of consumer health IT in recent years
designed for the purpose of enabling patients and their families to become
truly engaged consumers of health care (Poon et al., 2007). Tools such as
PHRs can help patients feel more knowledgeable about their conditions,
offer shared decision making, and can lead to fewer gaps in care (California
HealthCare Foundation, 2010; Detmer et al., 2008; Zhou et al., 2010).
For example, one study found that patients had eight times more adverse
events than noted in their medical records when asked directly if they had
experienced a problem with a drug (Gandhi et al., 2003). Importantly,
PHRs can also be used to improve communications between patients and
health professionals.
OCR for page 117
117
PATIENTS’ AND FAMILIES’ USE OF HEALTH IT
It is reasonable to assume that, over time, patient interest in health IT
resources will increase, especially given the broad appeal of general Internet
use, including social networking and other consumer-oriented web services.
Among American health care consumers, considerable interest exists in
Internet access to personal health information stored on electronic health
records (EHRs). Across several surveys, 76 to 86 percent of respondents ex-
pressed interest in having access to their health information over the Internet
(Fricton and Davies, 2008; Patel et al., 2010; Wen et al., 2010); however, at
that time, 1 in 11 had experience doing so (Wen et al., 2010). It has been
found that people pay more attention to and become more engaged in their
health and medical care when they have easy online access to their health
information (Skorve, 2010).
In addition, patient “engagement” and “centeredness” have become
ubiquitous goals and objectives of many policies and programs promoted
by health reform. For many engaged in realizing these goals, widespread
adoption and use of health IT by the public is a necessary, if not sufficient,
condition. Within the very large and heterogeneous category of consumer-
focused health IT, a few have the potential to increase patient engagement
in their own health management (see Box 5-1).
To better understand the impact of consumer health IT, the Agency for
Healthcare Research and Quality (AHRQ) held a workshop and issued a
B OX 5-1
Sample of Consumer Health IT Tools and Services
• ersonal health records (integrated and free standing)
P
• pplications on common devices like smart phones (technology
A
that provides voice and text communication, video and transmis-
sion of wireless monitoring data)
• ccess to health information (via multiple electronic sources)
A
• ntegration with remote monitoring (personal and home devices
I
and observation systems)
• nternet-based social networking and support
I
• nternet-based search engines and electronic knowledge bases
I
• nternet-based administrative services that support care coordina-
I
tion (appointment scheduling, prescription refills, lab results)
• ecision support tools for assessing day-to-day health status or
D
progress toward a health-specific goal (e.g., weight loss, glucose
control, caloric intake, cardiac fitness)
• evices supporting remote monitoring and transmission of data
D
(e.g., from a patient’s home environment to a clinician or health
“coach”)
OCR for page 118
118 HEALTH IT AND PATIENT SAFETY
report in 2010 recognizing that the contribution of consumer health IT to
intended and unintended consequences will need to be analyzed continu-
ally. The report recommended “[r]igorous research is needed to examine
the impact of consumer health IT use on various outcomes (including be-
havioral, clinical, patient experience, provider experience, efficiency, and
unanticipated outcomes), and the specific relationship of design to those
outcomes” (Wilson and Peterson, 2010).
PERSONAL HEALTH RECORDS
One tool of particular importance to engage patients and their families
is the PHR. PHRs may include features such as health and lifestyle records,
ability to book appointments and receive reminders, patient–doctor mes-
saging, and consultation summaries. PHRs are classified as either integrated
PHRs or freestanding PHRs. The extent of the differences depends on the
specific implementation of the PHR, but this discussion focuses on data
and content, stewardship, and self-management features and tools. While
considerations of privacy, security, and confidentiality are critical to the
development of PHRs, the committee deemed full discussion of these issues
to be outside the statement of task.
Data and Content
Integrated PHRs are an essential component of many EHR systems.
Data from a resource (e.g., EHRs, insurance claims) populate an integrated
PHR. Many of these systems typically offer a portal for secure, online
patient access and can serve as an interface to provide useful information
to both patients and health professionals. The patient is given a view to key
elements of the EHR. In some integrated PHRs, patients can add supple-
mental data under the broad heading of patient experience, including activi-
ties of daily living, reactions to treatments, self-management activities such
as exercise, dietary diaries, and data collected from another primary device
(e.g., glucometer readings, scales, blood pressure devices). Patients may also
amend data, track progress on chronic health issues, and/or otherwise inter-
act with their care team via the portal. Patients can download their PHR
to paper or electronic format for transport. While it is difficult to build an
integrated PHR that allows health professionals to communicate effectively
with their patients, a few EHRs do this well and could serve as models as
other products are developed.
Freestanding PHRs such as Microsoft HealthVault are not linked to an
EHR, although many of them may allow individuals to access data from
different providers’ EHRs. Enabling measures such as the “blue button”
concept developed by the Markle Foundation (Ellerin Health Media, 2010)
OCR for page 119
119
PATIENTS’ AND FAMILIES’ USE OF HEALTH IT
could help consumers download electronic copies of health records to a
location of their choice; this capability exists with the MyHealtheVet and
MyMedicare. They may be especially useful to the health of certain popula-
tion groups such as migrant workers (MiVia, 2011).
Stewardship
One primary distinction between integrated and freestanding PHRs is
that many integrated PHRs do not require patients to actively manage or
maintain their data yet still allow access to clinical data. In contrast, the
individual (and possibly his legal proxy) is typically primarily responsible
for initiating and maintaining all aspects of a freestanding PHR—including
collecting, organizing, and storing data—but there are potentially fewer
opportunities to validate secondarily or verify the accuracy of content.
Thus, the individual patient controls all aspects of the freestanding PHR.
Self-Management Features and Tools
In addition to serving as a repository of personal health data, PHRs
may provide patients with other health management and communication
tools. Portals within integrated PHRs provide access to records and data, as
well as convenience tools for appointments, prescriptions, billing questions,
and other communications.
To date, freestanding PHRs have had more limited adoption than inte-
grated PHRs. The future of freestanding PHRs is unclear (Google decided in
June 2011 to discontinue marketing and supporting its application Google
Health).
MITIGATING SAFETY RISKS OF PATIENT ENGAGEMENT
TOOLS: “RULES OF ENGAGEMENT”
The discussion of Chapter 3 introduced the idea of viewing health IT
as a component in a larger sociotechnical system that includes technology,
people, processes, organizational practices, and the external environment.
Adding patients themselves inserts an additional layer of complexity in
thinking about how to enhance the safety of patient safety tools in actual use.
For example, although PHRs and other patient engagement tools are
designed to have a positive impact on patients’ management of their own
health, computer-mediated interactions between people are known to be
more prone to misinterpretation and misunderstanding than interactions
conducted face-to-face (Epley and Kruger, 2005; Kruger et al., 2005). Given
the importance of clear patient-provider communications, special attention
may have to be devoted to ensuring that computer-mediated interactions
OCR for page 120
120 HEALTH IT AND PATIENT SAFETY
are not used inappropriately. Compensation and payment plans and/or
job expectations for care providers may have to be adjusted if sufficient
amounts of useful information are to be delivered to patients. Freestanding
PHRs will need to be designed so that health professionals can track easily
and clearly the provenance, accuracy, and currency of data that they did
not themselves enter. Health professionals will need to establish procedures
to identify and correct errors in an integrated PHR. To be most effective,
these mechanisms have to be communicated to patients and their families.
Questions surrounding how PHRs can facilitate communications will
require health professionals to manage patient expectations. Health profes-
sionals and patients and their families need to develop a shared understand-
ing of appropriate use of patient-entered, validated data. An example of an
expectation to be discussed is the types of health problems that are both ap-
propriate and inappropriate for electronic models of communication alone.
Managing expectations of both patients and health professionals as to the
currency of information and the turnaround time for various applications
can have implications for patient safety.
PHRs and other patient engagement tools will benefit from employing
user-centered design that enhances the ability of patients and their families
to take part in their care management and coordination. There is growing
interest in providing mechanisms that support patient and family feedback
to providers and clinicians about their experiences of care so as to inform
safety and quality improvement. Innovative and flexible applications offer
greater opportunity for engagement (Brennan et al., 2010). Features might
include using general IT solutions familiar to patients and their families
(both non-Internet-based and Internet-based). Simple, easy data entry ought
to be available through a variety of different means (e.g., touch interface,
key strokes, mouse). Common international standards for such patient ap-
plications may reduce confusion and support both utilization and safe use.
An international team has developed a global EHR template standard for
PHRs that offers patients the flexibility of the record summary remaining
on the web, being stored in a cell phone, being used on a computer, or
being stored on a flash drive (Li et al., 2012). Such a ubiquitous standard
for data structure and minimal EHR elements offers an excellent research
opportunity for greater use and also safety studies.
Use of mobile applications (mobile apps) has become more widespread
and a wide variety of mobile medical apps has been developed. As of July
2011, the Food and Drug Administration (FDA) has issued draft guidance
stating that it will only regulate mobile applications that either impact
the performance or functionality of currently regulated medical devices
or have conventionally been considered medical devices. These apps will
be classified and regulated similarly to other medical devices under FDA’s
jurisdiction. Apps to be used as PHRs, to track general health and wellness
OCR for page 121
121
PATIENTS’ AND FAMILIES’ USE OF HEALTH IT
such as dietary logs and calorie counters, and to automate common medical
knowledge will only be regulated at FDA’s discretion (FDA, 2011). As new
apps are developed that serve patients and their families as a mobile medical
device, their impact on safety will need to be examined.
It is important to note that, although not directly related to safety, over-
reliance on technology as a vehicle to provide patients access to their health
data or other decision-making tools may create barriers for many con-
sumers. Limited access by some populations as a result of the availability of
hardware and high-speed Internet connectivity may diminish broad access
and create inequities or exacerbate disparities. Furthermore, obtaining the
knowledge and skills needed to navigate the Internet, sign up for portal ac-
cess, and then use the sites effectively may be intimidating, challenging, or
impossible for some patients. English-language proficiency, health literacy
levels, and numeracy skills all play important roles in the ability of an indi-
vidual to interpret, understand, and use most of the data and information
stored in electronic records, much as in paper records (Yamin et al., 2011).
POPULATION HEALTH MANAGEMENT
Technologies are emerging that will enhance tracking of population
health. Reporting of conditions to health departments, and recording emer-
gency and natural disaster situations, can inform community and public
health officials about health and illness patterns and needs. Populating
databases about lifestyle, healthy behaviors, and disease prevention inter-
ventions will add new knowledge to our system that currently focuses
mainly on diseases and treatment. As data are analyzed across communities,
workers and clinicians can learn about local health risks and disease rates.
In addition to reporting and querying information, core functionalities of
a population health record would include generating alerts, identifying
disease outbreaks and trends, identifying geographic influences on illness,
and reporting of behaviors impacting health or development of disease
(Friedman and Parrish, 2010). Longitudinal records can bring together
data from PHRs, EHRs, and public health agencies. Eventually, analysis of
health care equity across populations may guide approaches to eliminate
health disparities.
PHRs can boost patient safety not only at the individual level but also
for aggregate populations. Accessing patient information across care set-
tings is essential to future enhancements in safe delivery of care (Kilbridge
and Classen, 2008). As communities promote nationwide exchange of
health information, pooling of information about consumer engagement
and learning strategies can reveal approaches for better integration of PHRs
with provider records and engagement of consumers in health-promoting
behaviors.
OCR for page 122
122 HEALTH IT AND PATIENT SAFETY
CONCLUSION
The field of patient engagement tools that rely on health IT is rapidly
developing and offers many potential benefits to patient care. However, the
unintended consequences these tools may have, such as threats to patient
safety, have not been adequately studied. The increasing use of health IT
by consumers, patients, and families creates an urgent need for the develop-
ment and support of a research agenda to inform future public policy about
the design, implementation, and use of such tools.
REFERENCES
Brennan, P. F., S. Downs, and G. Casper. 2010. Project HealthDesign: Rethinking the
power and potential of personal health records. Journal of Biomedical Informatics
43(5 Suppl 1):S3-S5.
California HealthCare Foundation. 2010. Consumers and health information technology: A
survey. Oakland, CA.
Detmer, D., M. Bloomrosen, B. Raymond, and P. Tang. 2008. Integrated personal health
records: Transformative tools for consumer-centric care. BMC Medical Informatics and
Decision Making 8:45.
Ellerin Health Media. 2010. Markle Foundation and the blue button. http://ellerinhealthmedia.
com/2010/10/19/markle-foundation-and-the-blue-button/ (accessed June 27, 2011).
Epley, N., and J. Kruger. 2005. When what you type isn’t what they read: The perseverance
of stereotypes and expectancies over e-mail. Journal of Experimental Social Psychology
41:414-422.
FDA (Food and Drug Adminisitration). 2011. Draft guidance for industry and Food and Drug
Administration staff—mobile medical applications.
Fricton, J. R., and D. Davies. 2008. Personal health records to improve health information
exchange and patient safety technology and medication safety. In Advances in patient
safety: New directions and alternative approaches, Vol. 4. Rockville, MD: Agency for
Healthcare Research and Quality.
Friedman, D. J., and R. G. Parrish. 2010. The population health record: Concepts, definition,
design, and implementation. Journal of the American Medical Informatics Association
17(4):359-366.
Gandhi, T. K., S. N. Weingart, J. Borus, A. C. Seger, J. Peterson, E. Burdick, D. L. Seger, K.
Shu, F. Federico, L. L. Leape, and D.W. Bates. 2003. Adverse drug events in ambulatory
care. New England Journal of Medicine 348(16):1556-1564.
HHS (Department of Health and Human Services). 2011. Report to Congress: National strat-
egy for quality improvement in health care. http://www.healthcare.gov/center/reports/
quality03212011a.html#es (accessed June 27, 2011).
IOM (Institute of Medicine). 2001. Crossing the quality chasm: A new health system for the
21st century. Washington, DC: National Academy Press.
Kilbridge, P. M., and D. C. Classen. 2008. The informatics opportunities at the intersection
of patient safety and clinical informatics. Journal of the American Medical Informatics
Association 15(4):397-407.
Kruger, J., N. Epley, J. Parker, Z. Ng. 2005. Egocentrism over e-mail: Can we communicate as
well as we think? Journal of Personality and Social Psychology 89(6):925-936.
OCR for page 123
123
PATIENTS’ AND FAMILIES’ USE OF HEALTH IT
Li, Y., D. Detmer, S. Shabbir, P. A. Nguyen, W. Jian, G. I. Mihalas, E. H. Shortliffe, P. Tang,
R. Haux, M. Kirmura, and K. Toyoda. 2012. A global travelers’ electronic health record
template (TrEHRT) standard for personal health records. Journal of the American Medi-
cal Informatics Association 19(1):134-136.
MiVia. 2011. About MiVia. https://www.mivia.org/about_us.aspx (accessed June 27, 2011).
NQF (National Quality Forum). 2011. National priorities partnership: Priorities. http://www.
nationalprioritiespartnership.org/PriorityDetails.aspx?id=596 (accessed July 30, 2011).
ONC (Office of the National Coordinator for Health Information Technology). 2011. Health
IT strategic plan 2011-2015. http://healthit.hhs.gov/portal/server.pt?open=512&objID
=1211&parentname=CommunityPage&parentid=2&mode=2 (accessed June 27, 2011).
Patel, V. N., R. V. Dhopeshwarkar, A. Edwards, Y. Barron, J. Sparenborg, and R. Kaushal.
2010. Consumer support for health information exchange and personal health records:
A regional health information organization survey. Journal of Medical Systems (July 29,
2011 [Epub ahead of print]).
PCAST (President’s Council of Advisors on Science and Technology). 2010. Realizing the full
potential of health information technology to improve healthcare for Americans: The
path forward. http://www.whitehouse.gov/sites/default/files/microsites/ostp/pcast-health-
it-report.pdf (accessed May 18, 2011).
Pew Research Center. 2011. Health topics. http://www.pewinternet.org/~/media/Files/Reports/
2011/PIP_HealthTopics.pdf (accessed August 9, 2011).
Poon, E. G., J. Wald, J. L. Schnipper, R. Grant, T. K. Gandhi, L. A. Volk, A. Bloom, D. H.
Williams, K. Gardner, M. Epstein, L. Nelson, A. Businger, Q. Li, D. W. Bates, and B.
Middleton. 2007. Empowering patients to improve the quality of their care: Design and
implementation of a shared health maintenance module in a US integrated healthcare
delivery network. Studies in Health Technology and Informatics 129(Pt 2):1002-1006.
Skorve, E. 2010. Patient safety, resilience and ICT. A reason for concern? Studies in Health
Technology and Informatics 157:199-205.
Wen, K. Y., G. Kreps, F. Zhu, and S. Miller. 2010. Consumers’ perceptions about and use of
the Internet for personal health records and health information exchange: Analysis of the
2007 Health Information National Trends Survey. Journal of Medical Internet Research
12(4):e73-e73.
Wilson, C., and A. Peterson. 2010. Managing personal health information: An action agenda.
Rockville, MD: Agency for Healthcare Research and Quality.
Yamin, C. K., S. Emani, D. H. Williams, S. R. Lipsitz, A. S. Karson, J. S. Wald, and D. W.
Bates. 2011. The digital divide in adoption and use of a personal health record. Archives
of Internal Medicine 171(6):568-574.
Zhou, Y., M. H. Kanter, J. J. Wang, and T. Garrido. 2010. Improved qualilty at Kaiser
Permanente through e-mail between physicians and patients. Health Affairs
29(7):1370-1375.
OCR for page 124
