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Global Challenges in People-Centered e-health
Yuri Quintana, Ph.D., Charles Safran, MD
Division of Clinical Informatics, Beth Israel Deaconess Medical Center and Harvard Medical School
Abstract
People-centered health care seeks an active role for the patient
while empowering all other members of the health care team.
By promoting greater patient responsibility and optimal usage,
patient- centered health care leads to improved health out-
comes, quality of life and optimal value for health care in-
vestment. This paper reviews some definitions of people-
centered health care and various e-health approaches around
the world used to implement this vision. The barriers and en-
ablers to implementation this type of approach are explored.
This paper provides a proposed research agenda for future
implementations of people-centered e-health.
Keywords: person-centred health care, participatory health,
health services research, individualized care, complex
systems, transdisciplinary research , people-centered e-health
Introduction
It has been long argued that “the largest and yet least used
health care resource, worldwide, is the patient or prospective
patient” [1,2,3,4]. In recent years, technology has helped to
provide patients a greater voice in how health care is accessed
and delivered. People-Centered Health Care medicine [5] is a
model of medical care in which the active role of the patient is
emphasized. The overall vision for people-centered health
care is one in which individuals; families, and communities
can participate in trusted health systems that respond to their
needs in humane and holistic ways. People-centered health
care is an umbrella term that better encapsulates the foremost
consideration of the patient across all levels of health systems.
It is based on these values
• Patient Empowerment - Access to clear, concise and
intelligible health information and education that
increase health literacy; skills that allow control over
health and engagement with health care systems
• Patient Participation - involvement of patients in
health care decision-making, including health policy
• Family Engagement, - Safe and welcoming physical
environment supportive of their lifestyle, family,
privacy, and dignity
• Social Justice - Equitable access to all regardless of
location and end to gender and all other forms of
discrimination
Although the definitions of people-centered health care vary
slightly depending on the source, the goals of the concept
remain the same. Gilles Frydman [6] sums up the concept
nicely by saying “participatory medicine is a movement in
which networked patients shift from being mere passengers to
responsible drivers of their health, and in which providers
encourage and value them as full partners”. People-centered
health care seeks to empower all members of the health care
system in a full partnership. It is not about empowering
patients only, or providers only, but about creating a health
care environment where all team members can bring value to
the process and be respected for those contributions.
Participatory medicine is based on the development of a team
that includes the patient, often referred to as an e-patient. E-
patients were defined by Tom Ferguson and colleagues [7] as
“e-Patients represent the new breed of informed health
consumers, using the Internet to gather information about a
medical condition of particular interest to them. The term
encompasses both those who seek online guidance for their
ailments and the friends and family members who go online
on their behalf. The Society for Participatory Medicine [8] has
the following guiding principles for the concept of people-
centered care:
• To guide patients and caregivers to be actively
engaged in their health and health care experiences.
• To guide health professional practices where patient
experience and contribution is an integral goal of
excellence.
• To encourage mutual collaboration among patients,
health professionals, caregivers and others allowing
them to partner in determining care.
The definition of people-centered health care has shifted over
the years, and the implementation has also shifted; however
the core values have remained the same.
Methods
We searched the PubMed using the search query (“people-
centered” or “patient-centered” or “people-centred” or
“patient-centred” or “participatory medicine”) and (“patient
empowerment” or “patient participation” or “family
engagement” or “social justice”) in titles and abstract,
searched the Internet with the same terms. We then reviewed
websites and publications and summarized the objectives,
approaches and outcomes of some of the frequently cited
programs in the areas of patient empowerment, patient
participation, family engagement, and social access.
Results
Patient Empowerment
These initiatives seek to provide clear, concise and intelligible
health information and education that increase health literacy;
skills that allow control over health and engagement with
health care systems. Empowering patients requires providing
access to knowledge they can access, and at level they can
understand.
Initially created under pressure in the 1980s from USA HIV
patient community, the United States government created
ClinicalTrials (www.clinicaltrials.gov) that is run by the U.S.
National Library of Medicine (NLM). It now includes both US
and international clinical trials and is one of the largest openly
accessible repositories of clinical trials worldwide. United
States also mandated that all U.S. government-funded research
must be made publicly available on Pubmed Central
(http://www.ncbi.nlm.nih.gov/pmc) after one year of
publication in a journal. The European Union created the
Open Science Initiative encouraging all EU Member States to
put publicly-funded research results in the public sphere in
order to strengthen science and the knowledge-based-economy
(http://ec.europa.eu/research/swafs/index.cfm?pg=policy&lib=
science).
Clinical practice guidelines are publicly available online from
US National Guideline Clearinghouse (www.guidelines.gov),
the UK National Institute for Health and Clinical Excellence
(NICE) (http://www.nice.org.uk), the Netherlands NHG
(https://www.nhg.org), the German Agency for Quality in
Medicine (ÄZQ) (http://www.aezq.de). All these organiza-
tions are now members of the Guidelines International Net-
work (G-I-N) (http://www.g-i-n.net), an international network
of organizations and individuals involved in clinical practice
guidelines. G-I-N is owner of the International Guideline Li-
brary – the largest web based database of medical guidelines
worldwide - and pursue a set of activities aiming at promoting
best practice and reducing duplication.
To help users understand medical information, the NLM has
created MedlinePlus (http://www.nlm.nih.gov/medlineplus)
that provides curated consumer health information in English
and Spanish. Some material has been written at plain language
(grade 8 reading level) for low literacy populations. The
Institute of Medicine defines Health literacy [9] as “the degree
to which individuals have the capacity to obtain, process, and
understand basic health information and services needed to
make appropriate health decisions”. Some hospitals have
created cancer guides at the grade-4 reading level [10,11] and
made the content available online
(http://www.cure4kids.org/kids) . The US NLM has guides
for the development of consumer health information
(http://nnlm.gov/outreach/consumer/hlthlit.html). More
development and innovative dissemination strategies will be
needed so that all patients have access to materials at the level
they can understand and in their native language.
Another patient empowerment e-health approach is online
patient communities where patient share similar experiences.
Launched in September 1995, Association of Online Cancer
Resources (ACOR) (http://www.acor.org) is one of the first
online patient support groups. ACOR has over 142 online can-
cer communities for the sharing of information and support.
Patients, parents, caregivers, family members, and friends to
discuss clinical and nonclinical issues and advances pertaining
to all forms of a specific disease use ACOR online communi-
ties. This includes patient and caregiver experiences, psycho-
social issues, new research, clinical trials, long-term side ef-
fects and discussions of current treatment practices. ACOR
also hosts OncoChat, a real-time global support community
for people whose lives have been touched by cancer. Onco-
chat doesn't offer medical advice or professional counseling,
but provides understanding and support from people who
share similar experiences and emotions. Many virtual commu-
nities exist, and it is difficult to measure their impact [12], but
it can be a source of educational and psychosocial support.
PatientsLikeMe (www.PatientsLikeMe.com) was founded in
2004 by the brothers of an amyotrophic lateral sclerosis pa-
tient with the goal letting patients connect with similar pa-
tients and ask specific questions about their treatment options,
and about what to expect. The site members have reported
real-world experiences on more than 2,000 diseases. Patient-
sLikeMe allows members to enter real-world data on their
conditions, treatment, symptoms, weight, mood, quality of life
and more. This created a longitudinal record that can be dis-
played into charts and graphs. The data-sharing platform helps
patients to compare shared longitudinal data from other pa-
tients with the same condition(s), thus allowing members to
place their experiences in context and see what treatments
have helped other patients like them. PatientsLikeMe has in-
house research scientists that have published over forty peer-
reviewed scientific articles with over 700 citations. While this
is not intended to replace randomized control trials, it does
provide an additional way to rapidly access patient data for
preliminary investigations while providing patients a virtual
community.
CancerContribution (http://www.cancercontribution.fr) is a
French online platform that brings together stakeholders from
cancer (patients, doctors, politicians, associations, citizens) to
discuss diseases and its impact on society. Cancercontribution
stimulates debates on sensible topics, such as opening up the
news about a cancer diagnosis, working with cancer, the pa-
tients’ role in clinical trials, side effects of treatments, and so
on. The platform invites the users-patients to express their
opinions, following the formal principle that each opinion is
given the same weight as the others. A collaborative expertise
is co-created by this interactive process. All the opinions and
data collected are then analyzed and elaborated to develop
new participatory guidelines and political proposals. The plat-
form was created on the need for an online space where doc-
tors, patients, and caregivers can communicate, exchange in-
formation, create and co-produce knowledge.
23andMe (https://www.23andme.com) is a private company in
California the uses a saliva-based direct-to-consumer personal
genome test to offer estimates of a person’s predisposition for
more than 90 traits and conditions. The company aimed to
empower patients with additional information on their health
status. The company encountered regulatory challenges in
2013 when the US Food and Drug Administration (FDA) or-
dered the company to stop marketing its personal genome
service because they had not obtained the required FDA ap-
proval and dues to concerns about the potential consequences
of customers receiving inaccurate health results. This illus-
trates some of the regulatory challenges in providing direct to
consumer health services.
Patient Participation
These initiatives promote patient involvement in health care
decision-making, including health policy. People-centered
health includes ‘shared decision-making’ in primary care
settings. When there are several treatments possible,
healthcare professionals can involve patients in the process of
making decisions about their care so that the patients can
choose care that meets their needs and reflects what is
important to them. This approach is also known as ‘shared
decision-making’. Overall quality of the evidence for the
outcomes ranged from low to very low. A systematic [13]
review found that any such activity was better than none and
that activities for healthcare professionals and patients
together worked somewhat better than activities just for
patients or just for healthcare professionals. However, given
the small number of studies and the differences across the
studies, it was difficult to know which activities worked best.
This suggests that although the results are better when patients
are involved, more rigorous studies need to be done to
evaluate the outcomes of these programs and what methods
work the best.
Once example of a successful shared decision-making tool is
the Passport to TRUST Program (http://passporttotrust.org)
developed at Beth Israel Deaconess Medical Center in Boston
to improve the patient-physician encounter by making the
patient and their family informed partners in their care. The
TRUST team developed and piloted an electronic
communication tool, where the potential causes of a patient’s
symptoms are described to the patient and their family, any
tests or treatments justified as to how this will change
management, the timelines and follow up mapped out, and
their questions or concerns addressed. In an evaluation study
of the program [14], ninety-eight percent of patients were
extremely satisfied (77%) or somewhat satisfied (21%) with
the program.
Patient portals from primary care providers allow patients
access to parts of their online electronic medical record. One
such initiative in the United States is called the OpenNotes
initiative (http://www.myopennotes.org) that gives patients
access to the visit notes written by their doctors, nurses, or
other clinicians. In 2010, more than 100 primary care doctors
from three diverse medical institutions across the United
States began sharing notes online with their patients. In a
study [14] at three primary care practices: Beth Israel
Deaconess Medical Center (BIDMC) in Massachusetts,
Geisinger Health System (GHS) in Pennsylvania, and
Harborview Medical Center (HMC) in Washington. Of the
13,564 patients in the study, there were 11,797 who opened at
least one note (84% at BIDMC, 92% at GHS, and 47% at
HMC), 77% to 87% across the 3 sites reported that open notes
helped them feel more in control of their care; 60% to 78% of
those taking medications reported increased medication
adherence; 26% to 36% had privacy concerns; 1% to 8%
reported that the notes caused confusion, worry, or offense;
and 20% to 42% reported sharing notes with others. Another
study (Reti 2009) examined the governance models of some
early personal health record (PHR) adopters, and suggested
that to improve patient-centered care, policy making for PHRs
needs to include patient representation at a governance level.
A recent study [15] of the BIDMC patient portal usage in the
period 2001–2010, showed that at the end of 2010, 49,778
patients (22.7 percent of all patients seen within the system)
had enrolled in the portal, and 36.9 percent of enrolled patients
(8.4 percent of all patients) had sent at least one message to a
physician.
Personal health record platforms were designed to allow con-
sumers to maintain their personal health data online. Some
notable private sector initiatives include the Microsoft Health
Vault (www.healthvault.com), World Medical Card
(http://www.wmc-card.com), and the discontinued Google
Health (http://www.google.com/health) and discontinued
Mediconnect (https://www.mymediconnect.net). The problem
with private services is that they have difficulty integrating
data into health providers. Companies may also discontinue
services. There is open source software such as INDIVO™
(http://indivohealth.org) that requires users to enter all their
data. It is unclear the outcomes of these technologies at this
time.
The rise of mobile health applications has provided an oppor-
tunity for patients to provide patient-generated health data to
share with their healthcare providers. To date there are over 1
million health apps. The m-health marketplace is likely to
grow significantly with the introduction of health kits intro-
duced by Apple (https://www.apple.com/ios/whats-
new/health/), Google (https://fit.google.com), and Samsung
(http://developer.samsung.com/health). There are few places
that are reviewing m-health apps for usability, reliability or
outcomes. One such center is the Barcelona-based m-health
competency center (http://www.mobilehealthglobal.com).
Family Engagement
These initiatives seek to promote family engagement in health
care delivery, in a safe and welcoming physical environment
that is supportive of their lifestyle, family, privacy, and
dignity. Once of the earliest implementations was Baby
CareLink [17,18] an Internet-based application that supported
the educational and emotional needs of families with
premature infants requiring prolonged hospitalization in the
NICU. Parents could receive daily updates from the NICU,
track information about their baby's health, see recent pictures
of their baby, communicate with NICU staff, access a
personalized knowledge base for newborn care, and provide
feedback regarding the care process. NICU nurses could
communicate with families, personalize discharge planning
and baby care education, and access a medical reference
library. Following discharge, Baby CareLink was used to
support care coordination, follow-up monitoring and ongoing
communication with parents, with the goal of reducing
emergency department visits and re-hospitalization. Baby
CareLink was available in English and Spanish, uses simple
language, and leveraged multimedia to accommodate parents
with little or no Internet experience and low reading and
health literacy. Baby CareLink showed early promising results
in both large urban centers [17] and low-income populations
[18]. Concerns about Internet access among the Medicaid
population were addressed through a laptop lending program
which gave NICUs the ability to lend laptop computers to
families who did not have access to the Internet at home, but
were motivated to use the Baby CareLink system. This study
showed that 84% of Medicaid families who chose to use Baby
CareLink found access outside the hospital. Medicaid families
tend to look at information related to their baby’s care more
often than non-Medicaid families. This finding suggests that
medically indigent families may be using this application to
meet their educational needs to an even greater extent than
families with more resources.
As elderly patients face diminishing cognitive function, they
may need to transfer aspects of control of their personal health
information and decision making to one or more family mem-
bers. New e-health applications are being developed to sup-
port care coordination with elderly populations. Once such
system, InfoSAGE (Information Sharing Across Generations
and Environments), was designed to support the challenges for
families of communicating, coordinating, and collaborating on
shared care [19]. The goal of this system to support the special
needs of the independent elder, yet also be capable of support-
ing an incremental transition to shared management of infor-
mation. The aim is to improve the patient's and family's sense
of awareness and control over long term care plans, as well as
optimize overall resource utilization around care transitions.
Social Justice
These initiatives seek to provide equitable access to all
regardless of location and end to gender and all other forms of
discrimination. Several advocacy groups have developed to
promote person-centered healthcare. In Canada, the
Association for People Centered Health
(http://www.capch.org) has created online resources for
empowering patients. The Canadian Connected Health and
Wellness Project (http://www.chwp.org) is a collaboration
of 19 public, private, and academic partners have developed
online resources. In the United States, The Society for
Participatory Medicine has created a blog (http:://www.e-
Patients.net) with the latest news and information about
participatory medicine, and the Journal of Participatory
Medicine, a peer-reviewed publication including opinion,
evidence, and perspective. Both publications encourage
patients to submit content and participate in online
discussions. It also maintains an active twitter presence
(https://twitter.com/S4PM). The United Kingdom’s Health
Foundation has created the Person-centered care online
resource center (http://personcentredcare.health.org.uk). In
Scotland, the Person-Centered Health and Care Collaborative
(http://www.healthcareimprovementscotland.org) promotes
person centered-health care. The International Alliance of
Patients’ Organizations (https://iapo.org.uk) list over 200
members, many of which also promote the involvement of
patients. The World Health Organization has focused efforts a
promoting global people-centred health care and created some
policy guides [20,21].
Discussion
Several observations and implications can be derived from e-
health implementations that have been discussed above.
Online patient communities have been very prominent in
developed countries but remain under utilized in developing
countries. This is partially due to these countries having
slower Internet adoption rates. As the Internet develops in
these countries, there are more opportunities for patients to
network and advocate at a national level.
The Baby CareLink project [17,18] showed both high and low
income families can benefit from e-health engagement plat-
forms, and that medically indigent families may benefit educa-
tionally to even greater extent than families with more re-
sources. To ensure accessibility of these services, technology
needs to be provided (via donate or loaned equipment) to
make access to these e-health services equitable to all mem-
bers of a society.
The early experience with patient portals indicates that pa-
tients access their medical visit notes frequently. A large ma-
jority report clinically relevant benefits and minimal concerns,
and virtually all patients wanted the practice to continue. As
participation in online patient portals increases, electronic
communication should be considered part of physicians’ job
descriptions. Consideration needs to be given to the physi-
cian’s added time commitments and their compensation.
The growing aging population provides a great opportunity to
use technology to support elder healthcare. The challenge for
designing e-health systems for elder shared care management
is to understand how to design effective user interfaces for an
aging-population in cognitive decline, and how to manage the
gradual transition from an individual to a shared model.
Theres is growing use of mobile technologies worldwide.
More research is needed to evaluate m-health applications and
how to tailor them to developing countries and diverse
cultures. There are few places that are reviewing m-health
apps for usability, reliability or outcomes. Formal
methodologies will need to be developed to have reliable
outcomes and allow for comparison. Among the challenges
for health care providers will be how to receive the data,
verify the accuracy of the data, and find ways to analyze and
filter the data. In a world where physicians are already
overloaded with information, it will be difficult for most
hospitals and physicians to be able to integrate this data into
their workflow. Hospitals will also need to see how to allow
external devices to connect to their networks in secure ways
for any data uploads. The financing of m-health will also need
to be determined as there are costs for integration, training of
patients and healthcare providers, and possibly require
additional time and reimbursement of physicians and nurses to
review data.
It is unclear how many patients are involved in all patient
advocacy organizations worldwide, or how many health
policies have been changed as a result of advocacy by these
groups. Most of the advocacy groups are from developed
countries. However, it is important to note the global growth
of these organizations, and the potential of the Internet to help
organize and disseminate advocacy information.
Implications Developing Countries
People-Centered e-health care in developing countries can
only be fully achieved once there is adequate basic
infrastructure and health personnel. However, several things
can be done now to help facilitate the adoption. At the
university level, the concepts of people-centered care can be
introduced at the medical students in the curriculum. A health
informatics course can also be introduced that discusses e-
health applications and appropriate ways to design and
evaluate these systems. This will increase the chance of
locally developed solutions that will effectively meet local
needs.
Internet accessibility can be increased at hospitals and
community centers. Public libraries can provide more Internet
access and provide basic information search support to the
general public. Public education campaigns on health
misconceptions can help improve the understanding of health
choices. Health communication strategies can be done in print,
radio, and Internet by public health groups. The rapid growth
of mobile phones in developing countries creates a new
opportunity for health education and communication.
As the Internet access grows in low- and middle-income
countries, more patients will be able to connect with each
other and form advocacy groups. These formations must be
encouraged and supported. More must be done to ensure
accessibility to the Internet by low and disadvantaged
populations and to make people aware of online resources
available for education and networking.
Health literacy will be a major challenge globally. We need to
make medical information understandable and useful to all
populations. It will also require health literacy specialists,
cognitive scientists and anthropologists to understand how
information is processed and interpreted according local
customs and traditions. Information should be disseminated in
both in print and online. The use of the Internet will lower
costs of printing where the populations have access to the
Internet, but it should not be sole source as it would restrict
access to patients with Internet due location or economic
circumstance. Effective education of illiterate patients will be
a major challenge. The use of video and animations may help
in communicating health information to low literacy
populations.
To increase accessibility to publicly funded research, the
United States government has mandate that all publicly funded
research publications be made openly accessible online after
one year. Increasinlgy publicly funded clinical trials are be
publicly searchable online. These efforts increase the public
access to current research.
Finally, and most importantly, it will be important to
understand how to develop e-health solutions that are
appropiate to each region and culture and to not rapidly deploy
existing solutions to new populations. Patient engagement and
adherence are always challenging, but it can only be achieved
by understanding local customs, traditions, and cultures.
Conclusions
People-centered health care programs [1-9] provide an oppor-
tunity to promote patient empowerment, patient participation,
family engagement, and social justice. Some programs have
shown some promising results by showing increasing numbers
of patients using the programs [12-19] but the evidence on
outcomes is still limited [13]. Most of the programs are in
developed countries. Some international guidelines have been
developed for these programs [20,21]. This paper has pro-
posed some strategies for the design and implementation of
programs in developing countries. More research is needed for
how to design and evaluate these programs in different set-
tings and cultures. Patient representatives should be part of
product design teams, health care provider committees, and in
government policy committees so that programs that are cre-
ated support patient priorities.
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Address for correspondence
Yuri Quintana, Ph.D., Director for Global Health Informatics,
Division of Clinical Informatics, Beth Isreal Deaconess Medical
Cenrter, and Harvard Medical School
Email: yquintan@bidmc.harvard.edu
