The Path To Person-Centered Elder Care

The Path to Person-Centered Elder Care
Improving Quality and Sustainability

Radboud Honours Academy Reflections on Science
Honours Programme for Masters students
Think Tank The Future of Healthcare 2013-2014
Nicole E. H. Adams Radboud University Nijmegen
Laura J. Bruce Pennsylvania State University
Brennan F. Cornell Pennsylvania State University
Mathijs F. J. Mabesoone Radboud University Nijmegen
Caitlin E. MacNicol Pennsylvania State University
Paige E. Pokorney Pennsylvania State University
Anouk (A.E.) Putker Radboud University Nijmegen
Kathleen M. Quinn Pennsylvania State University
Stefan J. A. Remmers Radboud University Nijmegen

R A D B OU D H ON OU R S A C A D E MY

1

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Acknowledgments..p.2
Preface........p.3
Executive Summary....p.4
Introduction.....p.6
Improving Coordination of Care.........p.8
1. The Chronic Care Model and Patient-Centered Medical Homes (PCMHs)
2. Gatekeeping and Case Management
3. Utilizing Technological Advancements and Electronic Medical Records (EMRs)
4. Policy Recommendations

Personalizing Medicine Through Technological Advancements....................p.13
1. Pharmacogenomics and Adverse Drug Reaction (ADR) Prevention
2. Cost-Effectiveness
3. Addressing Patient Concerns

Promoting Shared Decision-Making....................p.17
1. Respecting the Autonomy and Dignity of Elders
2. Health Information Technology (HIT)
Conclusion...p.22

References....p.24


2

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We would like to thank Prof. Dr. Myrra Vernooij-Dassen, Dr. Mark Sciegaj, and Henk Willems for their help,
advice, and support during this project. This work could not have been realized without their expertise, guidance
and continuous feedback throughout the year. We would like to thank Noortje ter Berg MA from the Radboud
Honours Academy, and Dr. Christian Brady and Dr. Richard Stoller from the Schreyer Honors College for their
hospitality during the working weeks that were spent under their supervision and for their efforts in organizing
this program. In addition, we would like to thank Prof. Dr. Marcel Olde Rikkert, Lenie van den Berg, Han van
den Boogaard, Dr. Henk Schers, Prof. Dr. Jan Kremer, Prof. Dr. Gert P. Westert, Prof. Dr. Glenn Gerhard, Prof.
Dr. Michael Flanagan, and Prof. Dr. Harriet Black Nembhard for their contributions to this project.

Think Tank The Future of Healthcare 2013-2014

Radboud University Nijmegen Pennsylvania State University
Nicole E. H. Adams Law Laura J. Bruce Biology
Mathijs F. J. Mabesoone Chemistry Brennan F. Cornell Biomedical Engineering
Anouk (A.E.) Putker Medicine Caitlin E. MacNicol Nursing
Stefan J. A. Remmers Biomedical Sciences Paige E. Pokorney Biobehavioral Health
Kathleen M. Quinn Economics

3

12$34($
In September 2013, the Think Tank The Future of Healthcare kicked off their project with a working
week at the Radboud University Nijmegen, the Netherlands. This was for all of them the first time
they met, and provided them with the opportunity to get to know each other and delve deeper into the
project at hand: the future of healthcare for the elder population. Much was accomplished during that
week, and once the Americans had returned home, each student had established a topic within their
own field that would benefit the overall topic of investigation. This resulted in a collection of nine
individual papers that were used as the building blocks for the next stage of the project.
Using the individual papers, the think tank created groups of two or three students each with
comparable research interests. These small groups wrote a group paper combining these interests,
focusing on how the care for elderly could be improved from that perspective.
In January 2014, the Dutch students visited The Pennsylvania State University, USA for the second
working week. During this week, the students discussed their findings and conclusions from the past
half year, and formulated an outline for the final product: a policy paper aimed at improving the
quality and sustainability of person-centered elder care.
This document represents the final product of their work: a policy paper directed at policy makers in
the United States and in the Netherlands.


4

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By 2060, the percentage of the population that is aged 65 or above will have increased drastically in
both the United States and in the Netherlands
1,2
. This significantly growing group of elders will put
an increased demand on the healthcare system, as the elder population has distinct clinical and social
needs when compared to the general population
35
. In response, approaching healthcare for elders
from a person-centered perspective can increase the value-for-money and make the system more
sustainable
6
. In order to maintain quality and minimize expenditures on healthcare, innovations and
policy reforms are required to promote person-centered care. By transforming the healthcare system
in both the United States and the Netherlands, the quality and sustainability of future care can be
guaranteed.
Person-centered care informs and involves patients in medical decision-making and self-
management, coordinates and integrates medical care, provides physical comfort and emotional
support, understands the patients concept of illness and their cultural beliefs, and applies the
principles of disease prevention via behavioral change that is appropriate to diverse populations
6
.
This approach places the individual person at the center of the healthcare process. The aim of this
project was to study how person-centered elder care can be achieved. This policy paper focuses on
three areas: (1) improving coordination of care, (2) personalizing medicine through technological
advancements, and (3) promoting shared decision-making. These areas represent promising
approaches to achieving person-centered care for elders in a manner that preserves quality while
promoting sustainability.

First, by improving coordination of care, health outcomes can be improved with almost no additional
costs because healthcare services are appropriately delivered
7
. This is achieved via the deliberate
organization of patient care activities between the patient and two or more participants involved in
that patients care. In the US, an excellent example of a policy-supported model of person-centered
care is the Patient-Centered Medical Home (PCMH), which should be further promoted in the US and
abroad
8
. In addition, supporting health information technology platforms such as patient portals,
electronic medical records, and online sources of valid and useful information into the healthcare
system can improve the communication between groups of patients, and between patients and
physicians
911
.

Another aspect of coordination of care involves implementing a gatekeeper in the medical system to
reduce costs without lowering quality. In the Netherlands, the General Practitioner (GP) fulfills this
role. When necessary, a GP refers patients to medical specialists. Since gatekeepers cut healthcare
costs by avoiding unnecessary care (i.e. extraneous trips to emergency care and specialist facilities),
the cost-effectiveness of allowing Primary Care Physicians (PCPs) to become gatekeepers in the US
healthcare system should be investigated
12
. The transition may be challenged, which is why policy
must change. In addition, GPs or specified case managers in the Netherlands can serve as care
coordinators, thereby increasing efficiency, promoting person-centered care, and preventing patients
from getting lost when navigating the extremely complicated care system
13
. By implementing care
coordinators in both the Netherlands and the United States, health outcomes can be improved.
Second, personalizing medicine by incorporating genomic data into medical decision-making allows
for prescriptions and treatment plans that are customized to the patient
14,15
. This supports the notion
of person-centered care, and can reduce the incidence of adverse drug reactions (ADRs), which can

5

save up to $100 billion in the United States
16
. When considering the process of pharmacogenomics, in
order to ensure the quality of drugs developed for certain target subgroups of the population, it is
important to have an adequate representation of these subgroups in clinical trials. However, the elder
subpopulation is often excluded from clinical research, although elders exhibit a distinct metabolism
when compared to the general population
3
. Thus, the age-related guidelines for clinical trials in drug
development should be adapted to take the increasing elder demographic into account. Further, to
prevent the neglect of certain small genetic subgroups that may form in the development of drugs
based in pharmacogenomics, the government should review the policy for orphan genotype statuses
17
.
At present, there is little consistency in methodology between different cost-effectiveness studies in
pharmacogenomics
18
. Thus, the assessment methods for cost-effectiveness of pharmacogenomics
should be standardized. This is important for future comparisons between treatments and in making
reimbursement decisions.
The availability and storage of genetic information is crucial to the incorporation of genetic data in
medical decision-making. Due to the high sensitivity of genetic information, the Health Insurance
Portability and Accountability Act (HIPAA) and related Affordable Care Act (ACA) provisions in the
US should be updated to appropriately accommodate the special privacy requirements of genetic data
19
. Implementation of electronic infrastructure that is compatible with existing technology and that is
flexible for future innovations is also essential. This infrastructure must allow for sharing, comparing,
and evaluating of genetic as well as non-genetic medical data to ensure smooth and timely sharing of
patient information between providers and facilities.
A third strategy that will be invaluable to advancing person-centered care is the promotion of shared
decision-making, where physicians make medical decisions together with patients and their
caregivers. This is an essential aspect of person-centered care because it ensures that patients are
informed, empowered, and satisfied with the prescribed treatment or policy. Accordingly, the legal
guidelines regarding competence and advance directives should be reviewed to more appropriately
account for the autonomy and dignity of elders in end-of-life medical decision-making. It is important
that not only the care recipient, but also the caregivers are considered in the decision making process.
This is an integral component of end-of-life care that is currently missing from todays legislation
20
.
To deal with difficulties that arise with advance directives and elders suffering from conditions such
as dementia, a proper legal framework concerning competence is important. Proper guidelines
regarding competence can increase compliance to advance directives
21
.
Information technology can also play a role in shared decision-making. By allowing patients access to
their electronic medical records, they gain a more convenient control over their health (increasing
self-efficacy) and can make better-educated care decisions
22
. Combining empowerment with reliable
and accessible Internet information sources with electronic patient portals can give valuable insight
into diseases and treatments for patients and caregivers
23
. This will increase the efficacy of care and
save unneeded trips to providers
24
. Policy can promote the transition to the electronic age by
employing provisions to regulate health-related information on the Internet and to promote the use of
patient portals.
In order to accommodate for the growing elder demographic and to improve healthcare in the future, a
person-centered healthcare system should be implemented while quality of care and sustainability are
emphasized. Legislation focusing on improving coordination of care, personalizing medicine through
technological advancements, and promoting shared decision-making will be necessary in order to
support and expand this effort.


6

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The upcoming decades will be characterized by a large increase in the percentage of the population
that is over 65 years old. Figure 1 shows a 160% increase in the US population and a 180% increase
in the Netherlands population that is over 65. Healthcare systems and society will have to cope with a
larger elderly population, which poses a concern both inside and outside of medicine. This dilemma
raises several questions including, How do we maintain a high quality of care that best serves this
growing elder population?, How can we provide accessible, affordable care for so many elders as
the working population shrinks?, and How can we do all of these things sustainably so that
appropriate medical care is indefinitely viable and responsive to changes in the population?

In this paper, these questions are addressed by studying different healthcare strategies and
technologies that have the potential to alleviate the issues that arise. The idea of person-centered
medicine combines facets of coordinated care, personalized medicine, and shared decision-making to
bring a cohesive care model to patients, particularly elder patients.

Person-centered medicine looks at the patient as a person, recognizing that he/she is more than
simply something to cure. He or she has wants and desires outside of his or her illness that may
influence the decisions made with regards to medical care. Person-centered care allows us to focus on
aspects of health that medicine cannot focus on alone, and can therefore answer some of the questions
posed above. There are many portions of person-centered care that will help us to solve some of the
above questions, but we focus on three that will have the greatest impact:

Figure 1: Percentage of Population Over 65 in the USA and the Netherlands.
(Data retrieved from: http://esa.un.org/unpd/wpp/index.htm)
.

7

Coordination of care occurs when two or more health practitioners work together to solve
one persons issue. Coordination between providers is important so that resources are not
wasted and time is spent efficiently. Patient Centered Medical Homes (PCMH) are a standard
for coordination of care that should be applied to other portions of the system.

Personalized medicine encompasses solutions and treatments that are customized to the
patient based on genetics. For example, pharmaceuticals that are known to be more beneficial
for a particular genetic subpopulation of patients represent one type of strategy in
personalized medicine. This area of genetic analysis is becoming affordable and clinically
applicable.

Shared decision-making propagates timely conversations between the physician and patient,
in addition to conversations between a patient and his or her family. Shared decision-making
empowers patients, families, and physicians to make decisions that produce better outcomes
while respecting the dignity and autonomy of elders, especially for end-of-life care. Effective
communication between patients, families, and physicians is crucial to this aspect of person-
centered care.

Health Information Technology (HIT) is the thread that ties each aspect of person-centered care
together. HIT allows for innovations in personalized medicine to be implemented on a mass scale, by
carrying out all of the data analysis required for personalized pharmaceuticals or other treatments
based on genomics. HIT also provides the platform for the sharing of information between physician,
patient and family that is crucial for coordination of care and shared decision-making. The current
state of HIT is a fragmented conglomerate of corporate systems that typically do not interact with
each other. In addition, HIT solutions are currently characterized by low levels of use by medical
professionals
25
.

This policy paper addresses the issues posed by the growing elder population by summarizing
research in the three aforementioned areas of person-centered care. In extension of this research,
suggestions for policy are established in a manner that includes perspectives from the life sciences,
the physical sciences, the social sciences, engineering science, medicine, and law. This synthesis of
perspectives allows for a more complete picture of the challenges so that meaningful solutions can be
suggested.


8

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Due to an increased incidence of chronic illnesses in the elderly, improved coordination based on
person-centered care principles can offer a unique edge to elder care in particular. Of the 4.5 million
chronically ill patients in the Netherlands alone, 1.3 million suffer from more than one disease
26
. The
most common conditions include coronary heart disease, hypertension, dementia, chronic obstructive
pulmonary disease (COPD), and diabetes
27
. This phenomenon of multimorbidity poses challenges in
providing effective treatment. Since multimorbidity is so common in the developed world, it is
important that healthcare systems are able to address it efficiently. The increased multidimensionality
as a consequence of multimorbidity demands a better coordination of care to secure the quality of
healthcare.
Coordination of care refers to the deliberate organization of patient care activities between two or
more participants (including the patient) involved in a patients care to facilitate the appropriate
delivery of health care services. Organizing care involves the marshaling of personnel and other
resources needed to carry out all required patient care activities. This is often managed by the
exchanges of information among participants responsible for different aspects of care
28
.

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One of the most cited scientific models for chronic care management is the chronic care model
developed by Wagner, Austin, and Von Korff. This model emphasizes a highly integrated and
coordinated care system around the care-receiving patient, the care providers, and the community, as
depicted in Figure 2
29
. Wagner, Austin, and Von Korffs model is centered on six components: health
systems, delivery system designs, decision support, clinical information systems, self-management
support, and the community. By actively informing patients, involving them, and supporting them in
the healthcare process, they can make evidence-based decisions. The ideals set forth in the Wagner,
Austin, and Von Korff model can be put into practice through a delivery system that distributes tasks
across a team of caretakers in a personalized fashion while respecting individual preferences.
According to the Wagner, Austin, and Von Korff model, the personalized approach to the care
process is crucial for effective chronic care management, which is of paramount importance in an
aging population. Not only does this approach increase the efficacy of care, it also gives better value-
for-money
30
, and decreases the amount of required testing
31
. Thus, utilization of Wagner, Austin, and
Von Korffs model for chronic care management improves healthcare quality and is cost-effective.
Implementation of Wagners model should be supported and appropriate measures of speeding up this
process should be taken.
Patient-centered medical homes (PCMHs) in the US represent a practical example of the Wagner,
Austin, and Von Korff chronic care model to improve healthcare. A PCMH does not refer to a
physical home, but rather a way of organizing medical care in the best possible way for patients. In a
PCMH, care is comprehensive, patient-centered, and coordinated. The goal of a PCMH is to deliver
accessible, safe, high-quality care and to coordinate care throughout a persons life. Only after
proceeding through a strict accreditation process, the National Committee for Quality Assurance
(NCQA) can accredit a facility as a qualified PCMH.
8
Evidently, increasing the number of PCMHs
will increase the overall quality of care.


9

Figure 2: Wagner, Austin and Von Korff's Chronic Care Model (CCM) involving the six core components of the heathcare
system. If this system is used by informed, activated patients and a prepared, proactive team of caregivers, the productive
interactions yield improved health outcomes and greater satisfaction.

(Retrieved from: http://www.diabetesmine.com/2013/01/fresh-new-ada-standards-for-you-yes-type-1s.html/chronic-care-
model)
PCMHs often utilize community-based health promotion programs, which can provide socially
engaging exercise classes, chronic disease management support groups, a source of health education,
and disease screenings. With regards to therapy adherence and indicators for the health status of the
patient, these programs have been shown to be superior to traditional care via periodic visits to the
physician
32,33
. However, these community-based health promotion programs are not currently as
widespread in the United States as they are in the Netherlands. Moreover, the programs that do exist
in the US typically focus on one aspect of health promotion, most commonly physical exercise, and
can often be found in cities
34,35
. Examples of these programs are those organized by Americas
Program of All-Inclusive Care for the Elderly (PACE), which is certified by Medicare and includes
independent health promotion programs aimed at elders. In the Netherlands, More Exercise for
Seniors (MBvO) is another example. Besides the limited scope of these programs, the lack of
awareness in the medical community about the existence of these programs also contributes to their
underutilization. Hence, campaigns that seek to promote holistic approaches in these programs and
that raise awareness can easily contribute to improvement of healthcare. This can eventually lead to
greater independence, better functioning, and an improved quality of life for the care-dependent
elderly
32,33,3640
. Additionally, community involvement can result in a decrease in unnecessary
healthcare utilization
32,41,42
.

10

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General Practitioners (GPs) in the Netherlands provide primary care services and serve as a
gatekeeper to specialties. General Practice is a specialty on its own, as General Practitioners have had
3 years of additional medical training focused on primary care. A Primary Care Provider (PCP) may
be a physician, nurse practitioner, or physicians assistant. In the United States, a PCP may work in
Family Practice, where they see patients of all ages, in Internal Medicine, where they see strictly
adults, or in Pediatrics, where they see strictly children. Some also consider Gynecologists to be
Primary Care Providers who specialize in womens health.
The low incidence of wasteful care in the Netherlands can be attributed to the existence of GPs, who
function as gatekeepers and allow access to specialized medical treatments. In the past, healthcare
systems that use gatekeepers have been shown to spend 10% less on healthcare costs than systems
that allow direct access to medical specialists
43
. Although gatekeeping is associated with a wider
range of conditions managed by GPs, this has not been linked to changes in the diagnostic or
management style or their coordination of referral care
12,44,45
. Therefore, healthcare reforms that
incorporate a gatekeeper might be an attractive way to reduce the financial burden of the healthcare
system on society.
Additionally, the GP, together with a case manager, functions as key player in the network of
physicians around a patient. This crucial role prevents the benefits of care management from being
compromised
46
. In the United States, the PCMHs are also moving towards a system in which one
central person functions as coordinator of care. Nonetheless, there is room for improvement in the
Netherlands and the United States, and both nations can learn from the system of the other.
># ?2+0+@+*= $&,%*)0)=+,-0 A/B-*,&5&*26 -*/ C0&,2()*+, .&/+,-0 D&,)(/6 7C.D68
Technological advancements, such as patient portals, electronic medical records (EMRs), and
reimbursement reforms also play a major role in determining the success of PCMHs and overall
coordination of care
47
.
Patient portals can actively empower both the patient and caregivers in the healthcare process. In
order to utilize the full potential of patient portals, the Internet will serve as an important medium.
Early signs of the emergence of these portals in healthcare are already evident. A very good example
is the Dutch website MijnZorgNet. This portal enables patients, relatives, physicians, and other
relevant professionals to securely share and discuss information regarding the patient in a virtual
environment. These portals have the potential to reduce excessive use of the healthcare system and to
increase patient adherence and satisfaction
22
. Access to reliable medical information can help patients
to do background research, prepare for visits, and possibly save elderly patients a trip to the physician,
which is often more convenient for elders.
Physicians play a major role in finding and validating information sources for patients, and possibly in
communicating this information to patients. Alternatively, discussion boards can be used to
communicate with patients. Discussion boards are advantageous in that information is also open to
other members of the platform. In order for discussion boards to be successful, however, it is
important that the community is active and regularly posting interesting news and updates
48,49
.
Although this open communication is desirable, it is still uncommon
50
. Of course, implementing these
online platforms will demand time from already busy physicians. Therefore, physicians should be
allowed to spend time interacting with their patients in these virtual environments as part of their
regular working tasks. To maintain quality of care, this may need to replace some tasks that

11

physicians currently perform, rather than adding to their working schedule. It is likely that a critical
redistribution of working hours will be necessary.
Further, not only patient-centered portals should be considered in coordination of care. Professional
networks, such as the Dutch ParkinsonNet, can also improve the healthcare process. ParkinsonNet is a
professional network that involves training a select number of experts, such as physiotherapists, that
specialize in helping patients with Parkinsons disease
5153
. Experts can also actively collaborate and
discuss patient statuses. Although health outcomes might not necessarily change with these networks,
care will likely be more efficient and costs can be reduced
54
.
In order to adequately run these portals, the employed systems must be secure, user-friendly, and able
to host an ample number of active professionals. This is where many improvements can be made. For
instance, patients and physicians must be taught how to use these information systems. To achieve
this, the most effective way is to organize training sessions. Even a few weekly sessions can make a
fundamental difference in comfort with, understanding of, and use of the Internet
55,56
. The computer
skills of those elderly people that are willing to learn can be increased further by generating funds for
training sessions that increase Internet interest and searching efficiency, that improve attitudes,
knowledge, skill, health literacy, self-efficacy, and that decrease computer anxiety
5761
.
In openly accessible virtual environments, users commonly use aliases to ensure their privacy. To
prevent abuse of potentially sensitive information in the community that occurs with unrestricted
access to the portals, digital health portals might need to require additional information from users
before access is granted. This may include a valid patient number, which is necessary for some
MijnZorgNet discussion boards, the content of a text message sent to a verified phone number, as is
done by Dutch government websites that log in through DigiD, or a code generated by a physical card
and card reader, such as the Rabobank Random Reader in combination with the users bank card and
PIN code.
The Internet does not only facilitate communication between the patients, physicians, and others, it
also promotes physician-to-physician interactions. Such communication might result in a better
overview of disease in elderly patients and better coordinate the required care. Electronic medical
records (EMRs) are crucial to coordination between physicians. EMRs allow physicians to easily
share information about patients and to prevent erroneous decision-making
25,62
. The high incidence
of comorbidities in elders complicates a patients case. EMRs and computer analyses can prevent the
interference of different treatments and hence prevent ineffective or even detrimental therapies and
adverse drug reactions (ADRs)
6365
. Clinical analytical applications of EMRs can also solve complex
medical problems like comorbidities by incorporating previous treatments and potentially genomics
(vide infra). In particular, this would benefit the elder population. Thus, EMRs can lead to a higher
standard of care and better collaboration between physicians
911
. Due to the digital nature of the
EMRs, doctors from various locations can easily access the same medical record. This can save
valuable time and speed up the decision-making process. Giving patients the right to access their
medical record can give additional advantages. Access to medical records allows the patient to take
more responsibility and ownership for his or her health, which is essential in person-centered care.
Policy reforms that facilitate the use patient portals and EMRs should not only apply to clinical
practice. It is also crucial that future medical professionals receive education in this field to ensure the
integration of information technology in medicine.

12

EMRs are currently in use in the Netherlands, and are more effective than EMRs in other developed
nations including the United States, the United Kingdom, Germany, France, Australia, and Canada,
when a patient-reported errors and access to care are considered. However, the high number of
readmissions in the Netherlands is comparable to the other developed nations
66
. So although the
implemented EMRs already contribute to a better coordination of care, the Dutch healthcare system
should reconsider the coordination of care through transitions between care facilities.

E# 1)0+,F D&,)55&*/-2+)*6
Implementation of Wagner, Austin and Von Korffs chronic care model can improve the
coordination of care. To achieve this, the following points are of most interest:
o Person-centered medical homes should be promoted to improve the coordination of
care.
o Since the use of GPs as gatekeepers in the Netherlands has been shown to lower total
healthcare expenditures without affecting quality, the United States should consider
using PCPs as gatekeepers.
o Care coordinators, such as the general practitioners in the Netherlands, primary care
physicians in the United States, and case managers in both nations, should be more
explicitly implemented.
o Virtual patient portals and electronic medical records to improve the communication
between groups of patients and also between patients and physicians should be
encouraged.
o In order to secure the transition to a better coordination of care, the education of
healthcare professionals should be better geared to include these new insights.

13

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The completion of the Human Genome Project in 2003 has enabled the science of genomics to
determine and to some extent, interpret the genetic blueprint of an individual
67
. This blueprint
determines the way that biological processes in the body are regulated, and differs highly among
individuals. Some of this difference occurs in the parts of the blueprint that code for how drugs are
metabolized. Pharmacogenomics takes this variability into account when developing and prescribing
pharmaceuticals.
Genomics and pharmacogenomics have the potential to greatly increase the efficacy of medical
treatments, which will improve quality of life for elders and reduce healthcare costs. If physicians
understand the genetic make-up of patients, treatments can be better tailored and adverse drug
reactions (ADRs) can be prevented. Currently, genomic techniques have a limited utility for elders in
the clinical practice, because for some conditions, genomics seeks to identify genetic signs for
diseases at an earlier stage in life rather than at the onset of the disease. However, genomics is useful
for tailoring oncological treatments and in determining the metabolic characteristics of elders
67
.

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Since disease in the elderly is increasingly heterogeneous and more individuals suffer from
comorbidities, it is important to personalize not only the healthcare system, but also the medical
treatments themselves. This will help to prevent ADRs, which are, at the moment, the sixth leading
cause of death in the United States
68
. Not only does the quality of care delivered to the patient
increase with the prevention of ADRs, administering the right kind and the amount of pharmaceuticals
can also save over $100 billion in the United States
16
. This would serve as a significant reduction to
the total US health care expenditures, which were reported as $2.6 trillion in 2010
69
. However, it is
not realistic to assume that developments in pharmacogenomics will lead to a fully personalized
approach in which each patient receives a tailored pharmaceutical. Rather, genetic subpopulations will
be administered a treatment that is tailored to their specific needs and biological characteristics.

To effectively implement pharmacogenomics into daily practice, changes in the way pharmaceuticals
are developed will be required. In personalized medicine, it is crucial that the pharmaceutical
development process takes the target population into account. When the development of a new
pharmaceutical excludes elders, potentially lethal side effects can surface once the drugs are approved
for clinical use. Although there are known differences in drug metabolism between elders and the
general population, in about 25 to 40 percent of the clinical trials, subjects are omitted due to age
extremities
3,4
. With an increasingly older population that is care dependent, evaluation of the policies
concerning drug development and representativeness of elders in clinical trials should be considered.
Due to a lack of regulation for genetic tests and pharmacogenomic drugs, the emergence of these
products on the market is hindered. Setting clear guidelines for new types of medicine can improve
the availability of personalized medicines, because FDA approval will be more likely. Therefore, with
the necessary guidelines, the risks associated with personalized medicine development for
pharmaceutical companies can be lowered
70
.

14

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Currently, the sequencing of an individuals entire genome costs about $3,000. Due to scientific
progress, these prices will likely drop over the coming years and the expectation is that the quality of
these tests will also improve
71
. In addition, interpretation of this data adds to the costs, since it is not
always straightforward. This raises the question whether personalized medicine is cost-effective. The
cost per gained quality-adjusted life year (QALY) is central when analyzing the cost-effectiveness of
a medical treatment. On average, the acceptable cost per gained QALY ranges between $100,000 and
$265,000
7275
. However, there are no clear guidelines regarding how to perform cost-effectiveness
assessments in pharmacogenomics. Thus, it is difficult to compare different assessments and to decide
whether a treatment is cost-effective. Clear guidelines are needed, and should be consistent
throughout the international scientific community.
Moreover, certain treatments may still be warranted for reimbursement despite having higher than
typically acceptable costs per gained QALY, as long as the weighted average cost per gained QALY
over all available treatments is below the threshold value
75
. Personalized medicine will create a larger
variety in treatment methods, so it is important to take this argument into consideration when
reforming reimbursement policy to accommodate pharmacogenomics.
In elder care, the implementation of clinical genomics requires special cost-effectiveness
considerations. For genetically-linked diseases that surface early in life, treatments based on a
patients genotype are not entirely useful for the elder population. Yet in the field of oncology and in
determining a patients metabolic tendencies, genomics is pertinent
76
. Another factor to consider is
the utility of genomics across a lifetime. Currently, in elders that are nearing the end of life, it most
likely will not be effective to invest in genome sequencing
77
. In the future, if more individuals
consent to sequencing at a young age, the accuracy and scope of interpretable genomic data will likely
increase
71
. At the same time, if patients undergo sequencing at a young age, this data will be useful
throughout their lifetime, including when they are elders, which makes it quite cost-effective
78
.
In the Netherlands, hereditary tests, which incorporate genome sequencing, are reimbursed by the
obligatory basic health insurance. However, genetic tests can only be done after a referral by a
medical specialist, and can only be performed in clinical genetic centers that are assigned by the
government
79,80
. In the US, neither Medicare nor Medicaid covers preventive genetic testing.
Diagnostic genetic screenings, however, can be reimbursed. In future, preventative genetic screening
will likely be increasingly relevant to medical care, and thus, should be reimbursed in both nations for
newborns and young people, if the screening is desired.

15

># A//(&66+*= 1-2+&*2 ')*,&(*6
When implementing personalized medicine, genetic minorities should be protected. To prevent a total
neglect of patients suffering from orphan diseases (diseases that are so rare that pharmaceutical
companies have no interest in developing treatments), governments have enrolled subsidies to
encourage research and development for those diseases
81
. Obviously, small genetic subpopulations
will have to deal with a similar problem
82
. As a consequence of an increase in patient variability, the
conditions for orphan diseases and statuses should also be reconsidered
17
. Grants provided through
organizations such as the National Institutes of Health (NIH) in the US can promote the development
of drugs serving orphan genotypes
83,84
. Incorporating minority groups such as elders in clinical trials
is also important to increase representation of the entire population
85
.
With regard to genomic data in particular, concerns of patient privacy and confidentiality are often the
subject of the public debate. These issues are of utmost importance in the implementation of genomics
and pharmacogenomics. Due to developments in genetic data mining and the unpredictable
possibilities for exploitation that are associated with large data sets, genetic data must be treated with
caution. Access to genetic information should be closely monitored. For instance, a dilemma arises if
clinically relevant knowledge is uncovered when using patient data for research purposes. Should
individuals be notified if a serious genetically-linked condition requiring medical treatment is
identified in the research setting? Updating already existing medical privacy legislation such as The
Health Insurance Portability and Accountability Act (HIPAA), The Affordable Care Act (ACA)
provisions regarding the HIPAA, and the Genetic Information Nondiscrimination Act (GINA) in the
United States can ensure that medical records, and especially genetic records, are only available to
authorized physicians and patients
86
.
Genetic testing as part of the medical process is not always arranged by governmentappointed
institutes or centers. Direct-to-consumer (DTC) genetic health testing, which was previously offered
by companies like 23andMe, can also provide selective sequencing for customers at a low cost.
However, the interpretation of this data is limited and the accuracy is unclear. Clear quality guidelines
are needed to standardize this new branch of industry, so DTC companies can cooperate with existing
medical infrastructure. If DTC genetic test results could be connected to the healthcare provider and
found to meet quality guidelines, reimbursement would be applicable
87
.
Regardless of the source of genetic data, this sensitive health information should be stored in a secure
place with restricted access, just as with all health data that is available via EMRs. Although EMRs
should be easily accessible, only those that have the right and need to view the record should be
granted access. Fear of a lack of such security was one of the reasons implementation of a national
EMR system in the Netherlands failed
88
. In practice, it is very easy to track who has accessed a
specific EMR and to punish those that abuse this power
89
. Implementing security measures into
systems like the Dutch BIG registry for healthcare professionals can also help ensure that only
verified medical professionals have access to EMRs.
The high up-front cost of creating new EMR systems and integrating the older systems into the new
systems might appear as a disincentive
22
. However, if the new systems are developed in an open way
that secures innovation and interaction, these systems will eventually reduce costs and make the
sharing of information easier
64
. In order to prevent issues in integration, EMR systems should be
standardized and should embrace openness for innovation. The implementation of EMRs satisfies the
need for innovative technological solutions that can improve coordination of personalized medicine. If
EMRs are introduced in a user-friendly way that seeks to maximize the participation of elders in
particular, the quality of healthcare can be increased without creating tremendous financial burdens.

16

E# 1)0+,F D&,)55&*/-2+)*6
To ensure the quality of novel pharmacogenomics treatments in an aging population, the
guidelines for clinical trials in drug development should be adapted to take a demographic
change into account.
Cost-effective analyses of pharmacogenomics treatments should be standardized. This way,
accurate comparisons can be performed and the actual cost-effectiveness of new treatments
can be determined. HIPAA and the related ACA provisions should be reviewed to
appropriately accommodate genetic data.
Electronic infrastructure should be implemented in a standardized, open manner that allows
for sharing between different systems and innovation, so that the system can be improved
over time.

17

12*.*/7"- 9@42$# A$(707*"B>4)7"-
Patient-centered elder care necessitates that patients are informed and involved in medical decision-
making and self-management. This can be achieved by promoting shared decision-making, where
physicians make medical decisions together with patients and their caregivers. As a result, patients are
informed, empowered, and more confident with the prescribed treatment or policy. For elders, this
strategy also encompasses a productive assessment of patient competence and compliance to advance
directives. This strategy can reduce unnecessary second opinions by 68%, thereby creating a timely
and efficient provision of care
90,91
.
"# D&6<&,2+*= 2%& AH2)*)5F -*/ G+=*+2F )I C0/&(6
According to the cultural and legal practice in the United States and Europe, elder care should be
offered in a way that respects the autonomy and dignity of the elder patients. One of the fundamental
problems for elders living in residential healthcare locations is that they are not always asked about
what they want or what fits their standards and values, which conflicts with the notion of shared
decision-making
5
. Currently, the healthcare system is not designed to incorporate patient perceptions
in medical decision-making
92
. Although the number of statutory laws protecting elder patient rights
has increased in the past decade, due to the growing elder population, there is an increasing number of
elders with memory impairment and more seniors living in residential care
93,94
.
In shared decision-making for elders, the notion of competence and the role of advanced directives
must be considered. Competence is an essential concept in any jurisdiction that takes the rights of
elderly patients seriously
94
. However, when elders become unable to make their own decisions,
healthcare providers use previously drafted advance directives and the help of family members to
make decisions on behalf of the patient. In this way, shared decision-making can be maintained by
ensuring that the autonomy and dignity of elders are respected.
Determining whether or not elderly patients have lost decisional capacity to participate in decision-
making depends upon their competence. As a rule, elders are believed to be competent to make
healthcare decisions
94
. Yet, when elders suffer from cognitive impairment, extra steps must be taken
to determine whether the patient has the ability to understand and realize the risks, benefits, and
requirements of his or her health state and treatment
95
. The fact that elders might be unable to make
medical decisions does not mean that they are unable to make any kind of decisions. Yet, healthcare
decisions, which encompass greater risks than other day-to-day decisions, can only be made by elders
who are able to provide true informed consent
96
.
The concept of competence in healthcare decision-making has been a point of discussion in numerous
legislations, yet a widespread definition has not been established. In the Netherlands, medical care
providers abide by the Medical Treatment Agreements Act (Wetgeenideewaardieafkortingvoorstaat,
WGBO) of the Dutch Civil Code. Article 7:465 gives a legal representation of incompetent elderly
patients. It states that, patients have no legal capacity to act for themselves when they cannot be
regarded as being capable of making a reasonable appreciation of his or her interests in the matter.
In Dutch law, there is no standard for competence determination. The Explanatory Memorandum of
the WGBO states that whether an individual has the capacity to understand, make a decision, and take
responsibility for the consequences of the decision is a clinical determination
97
.


18

Furthermore, determining which individual makes the decision regarding the capacity of an elderly
patient is situational. Typically, it is the patients physician or healthcare provider
98
. In the United
States, another definition of competence is given in Act 169 of 2006 of Pennsylvania, as: A
condition in which an individual, when provided appropriate medical information, communication
supports, and technical assistance, is documented by a healthcare provider to do all of the following:
(1) understand the potential material benefits, risks, and alternatives involved in a specific proposed
health care decision; (2) make that health care decision on his own behalf; and (3) communicate that
health care decision to any other person
99
. Elderly patients need to demonstrate their ability to
think rationally, use information in a rational manner to reach a decision, and reflect upon that
decision
100
. This definition is a bit vaster than the definition in Dutch law. Still, statutory law does not
extensively regulate the criteria.
In literature, there is also no clear agreement about the criteria of competence, but there are several
published definitions. Appelbaum and Grisso
101
developed four components of competence based on
standards in American case law (Table 1).
Alternatively, according to Van de Klippe there are six approaches to determine competence: (1) the
patients ability to make and express a preference; (2) the patients decision need to be rational or
acceptable in the assessors view; (3) the patients reason for taking a certain decision; (4) the
patients ability to understand relevant information; (5) the extent to which the patient has actually
understood this information; and (6) the patients appreciation of his condition and health situation
102
.
As there is no clear consensus about the criteria of competence, the assessor need to determine which
approaches to use under what circumstances. In promoting shared decision-making for elders, a
concrete definition would be more effective and should be developed.
An advance healthcare directive refers to documents in which someone can describe preferences for
healthcare decisions. Some intend to select an individual to make decisions on the incompetent
patients behalf, while others give specific guidelines under what conditions certain kind of medical
care needs should be provided or withheld
103
. Advance directives play an important role in
maintaining shared decision-making if elders become incompetent. In this way, the elder patients
wishes can still be respected in decision-making when he or she becomes incapacitated and is
incapable to make healthcare decisions. Supporters of advance directives praise its ability to (1)
Component Patients Task Physicians Approach
Understanding Ability to explain a treatment choice Discuss the preferred treatment
Communication Ability to show understanding of relevant
information by information recall and
discussion of probabilities
Ask the patient to rephrase their choice
Appreciation Ability to recognize certain situations and
coherent consequences: identify disease,
routes for treatment and related possible
outcomes
Question the disease, treatment and possible
outcomes
Rationalization Ability of using information in a rational
way: consideration of risks and benefits
Ask the patient to compare the risks and
benefits of the possible treatment
Table 1: Components of Competence via Appelbaum and Grisso.

19

respect the autonomy and dignity of the elder person in regards to end of life decisions, and (2)
increase cost efficiency by avoiding unwanted and ineffective end-of-life treatments
21
.
Criticisms of advance directives fall under three major categories: completion, implementation, and
flawed underlying assumptions
104
. Problems of validity arise during the completion of advance
directives. Even after consultation with their doctor, many patients do not understand all of the
implications of their medical directives. Patients treatment preferences and relationships may also
change over time. Implementation problems with advance directives are related to accessibility and
compliance. Inaccessibility to an advance directive is a simple problem with many complex
implications. Very few signers carry their advance directive with them, and often times the directive is
not on file when a medical crisis occurs. This leaves physicians and family members liable for the
life-or-death decisions facing the incapacitated elder, and in these circumstances the advanced
directive is usually ignored
105
. Secondly, proxy decision-making in the presence of an advance
directive is often carried out in a high-stress and emotionally charged environment. Providing digital
access to advance directives for regular updates and simplicity in emergency situations might be
useful for these cases.
Notably, state and national laws providing incentives for compliance with advance directives do
appear to have a significant impact on end-of-life care, and should therefore be further promoted to
maintain shared decision-making. Elder persons in U.S. states with enforced compliance for advance
directives have exhibited a significantly reduced chance of dying in an acute care facility than in
states that did not enforce directive compliance
21
. However, across all levels of enforced compliance,
advance directives did not significantly reduce medical expenditures at the end of life. These findings
deflate the cost-effectiveness argument from proponents of advance directives.

9# 4&-02% J*I)(5-2+)* $&,%*)0)=F 74J$8

In order to support shared decision-making in a changing healthcare system, the role of technology
must be assessed for all patients. For elders, although shared decision-making is complicated by the
evaluation of competence and the incorporation of advance directives, health information technology
(HIT) is still useful. HIT can offer great benefits to patients with regards to shared-decision making
by providing accessible data sources to help patients look up relevant information to prepare for visits,
save time, and work collaboratively with healthcare providers. Online communities can be an
invaluable source of information, tips, and experience that may not be obtained from the physicians
office. Accessible electronic health records will allow patients to see and review their condition and
the physicians suggestions while patients can search for additional information in their own time. In
addition, giving patients custodianship over their own medical records by allowing them to access,
edit and complete certain parts of data can help to fill in the gaps of data that may exist.
Accordingly, there are online sources of information that can provide structure for patients to find
information. Static sources of information such as Wikipedia, WebMD
106
, Healthfinder
107
, and
SeniorHealth
91
provide plain text health information. Open and closed health communities such as
PatientsLikeMe
108
, MijnZorgNet
42
, and the Canadian Virtual Hospice
109
contain message boards,
discussion forums, and chat rooms. Open communities are generally open to anyone, while closed
communities let a select group of patients and medical professionals share information privately
110
.
Studies show that 60- 80% of adults search for health information online
111,112
, but only 4% of adults
were shown to use health communities
111
. Some of the most popular websites are allowing the
patients to access all types of information. These online sources can provide patients with information

20

that allows them to understand their condition, what the possibilities for treatment are, and how other
patients have experienced the condition. This allows patients to make an informed, shared decision
with their physician.

In order for HIT to have a positive impact, both patients and physicians need to work towards
accepting the Internet as a medium for healthcare, and be willing to work with it. In order for HIT to
be appealing, secure, and effective, several requirements must be met. The next generation of HIT
must disseminate information quickly and with as much security as necessary to allow patients and
doctors alike to gather information and communicate effectively. In doing so, the physician and
patient will be better prepared for in-person visits and be able to eliminate unnecessary visits.
First, patients need to have access to their medical records. In most countries, healthcare providers are
required to provide health data and records to patients, but the timeliness of delivering the records is
not well defined
22
. Although everyone in the Netherlands is permitted by law to access their own
patient records, this takes quite a long time, and records are received on paper and at a cost. In the US,
most legislation guarantees patients access to their records, but is less clear on when this access
should be granted
22
. A minority (41%) of physicians believe that patients should control their own
records and be able to prevent their healthcare provider from seeing one aspect of their records.
However, 54% of patients believe they should have this right
22
. When either is given the role of
custodianship, they must decide what is relevant for the provider and patient to see. There may be a
disagreement between what the patient and physician believes is relevant for viewing
22
.

The Radboud UMC is one of the first Dutch hospitals to provide a digital patient portal that allows
patients to access their medical record on the Internet. Some hospitals in the United States use health
portals as well. Hershey Medical Center in Hershey, PA has invested a lot into providing a patient-
and family-centered approach to health. Hershey implemented a portal that allows patients to securely
message their healthcare professionals, manage their appointments, view test results, and review their
medical history.
113
This gives patients easy access to information, and much more control and
convenience in managing their health, which promotes shared decision-making.
># 1)0+,F D&,)55&*/-2+)*6
For shared decision-making to be most effective in person-centered elder care, the legal guidelines
regarding competence and advance directives must be revisited in order to respect the autonomy and
dignity of elders in end-of-life medical decision-making. This incorporated the following:
Honest communication and emotional preparedness should be emphasized for stressful end-
of-life decision-making. The caregivers and not only the receiver of care should be considered
in the decision-making process.
A definition of competence must be established in order to best treat elders and promote
productive decision-making with physicians.
Laws providing incentives for compliance with advance directives should be further promoted
to maintain shared decision-making and avoid uncertainties in end-of-life care, although the
limitations of advance directives should also be considered.
To improve accessibility to advance directives for regular updates or in emergency situations,
digital alternatives should be explored.


21

Promoting the use of health information technology can support shared decision-making between
patients and physicians. In order for such technology to be effective, the following must be
considered:
Accessible and reliable internet sources of health information and online communities can
allow patients to gain valuable insights and support outside of the physicians office. These
online resources should be promoted, since informed patients can engage in productive shared
decision-making with their physician.
Electronic medical records should be made available to patients. This gives patients easy
access to information, and much more control and convenience in managing their health,
which promotes shared decision-making.
Patients and physicians should work towards accepting and employing the Internet as a
medium for healthcare. In order for this change to occur, health information technology
ought to be appealing, secure, and effective, by disseminating information quickly and with
adequate security protections in place.


22

<*"(,607*"
The path to person-centered elder care is complex. It involves many strategies to improve quality and
sustainability. In order to achieve improved quality of care, care needs to be well coordinated as
described by Wagner, Austin, and Von Korffs chronic care model. American Person-Centered
Medical Homes (PCMHs) are a great example of integrated, well-coordinated care. General
practitioners in the Netherlands have a similar expertise in care coordination. Both have goals to
deliver accessible and safe, high quality care and coordinated care throughout a persons life.
Technology will play a major role in this. By implementing safe, interactive patient portals, patients
can be informed and involved in medical decision-making and self-management. By doing so, a
patients care becomes well-coordinated and person-centered.

Another aspect of technology that will contribute to coordination of care is the electronic medical
record (EMR). EMRs will lead to a higher standard of care and better collaboration between
physicians. Due to the digital nature of the EMRs, doctors from various locations can easily access the
same medical record. This can save valuable time. On the other hand, successfully implementing
technology in medicine is time-consuming. Healthcare providers will have to spend time in these
virtual environments, interacting with their patients, as part of their regular working tasks. To warrant
the quality of digital and non-digital care, this should partially replace certain current tasks, rather
than add to the working schedule. Because the success of technology in medicine heavily relies on
health care providers, they will need to be educated properly to ensure positive outcomes.
Another use of technology to personalize, and therefore improve care, is the use of clinical genomics.
Since disease in elders is becoming increasingly heterogeneous and more individuals suffer from co-
or multi-morbidities, it is important to personalize medical treatments. For instance, by sequencing the
human genome, medical treatments can be tailored to an individuals genetic makeup. Unfortunately,
there are many barriers to overcome in clinical genomics. Due to a lack of regulation for genetic tests
and pharmacogenomic drugs, the emergence of these products on the market is impaired. Setting clear
guidelines for new pharmaceuticals can improve the availability of personalized medicine. Further,
there is currently no sufficient technological infrastructure to provide a means for open, easily
accessible genetic information that is also safely stored. Patient privacy and confidentiality are often
the subject of public debate when considering genetic information. These issues are of utmost
importance in the implementation of genomics and pharmacogenomics. Because the developments of
genetic data mining and the possibilities with big data cannot be predicted, genetic data has to be
treated with caution and access to this information should be closely monitored. Protecting patient
data and privacy can possibly be done via updates to already existing medical privacy legislation such
as The Health Insurance Portability and Accountability Act (HIPAA) and the associated Affordable
Care Act (ACA) provisions in the United States, which ensure that medical records are only available
to authorized physicians and patients. A third hindrance is the ongoing question of whether or not
personalized care is cost-effective. The problem with assessing the cost-effectiveness of personalized
pharmacogenomics is that there are currently no guidelines on how to perform these assessments.
Clear guidelines have to be set before personalized medicine can be fully implemented.
A changing health care system requires continuously changing rules and guidelines to support and
protect the decision-making. The law, both Dutch and American, has changed numerous times
concerning person-centered care. A term that is addressed frequently is shared-decision making.
Shared-decisions between physicians and patients allow patients to feel more confident with the
prescribed treatment or policy, leading to fewer unnecessary second opinions. The aforementioned

23

technologies will play a large part in shared-decision making. By providing an overview of disease
management and health care providers that are involved, a patient is seen as partner in decision-
making. Unfortunately, this has led to the complex discussion of how to proceed when a person is not
considered competent enough to make his or her own decisions. This discussion especially concerns
the elderly population. There is no clear agreement about the criteria for competence. Dutch and
American laws employ relatively similar considerations: one must show the capacity to understand
provided information and must comprehend the expected consequences of different situations.
However, there are many cases in which this does not apply. Both law systems are concerned with the
autonomy and dignity of patients, especially for end-of-life decisions. Advanced directives are legal
documents that apply when patients are incapable of making healthcare decisions, and are
representations of the patients wishes. Some intend to select an individual to make decisions on the
incompetent patients behalf, while others give specific guidelines regarding under which conditions
medical care should be provided or withheld. However, there are criticisms of advance directives in
three major categories: completion concerns, implementation concerns, and flawed underlying
assumptions.
Improving sustainability of the changing health care system is crucial. However, sustainability and
expenditures are inextricably linked. It is a challenge to raise one and lower the other. Nevertheless,
implementing gatekeepers in medical care has been shown to have positive outcomes in this area.
Healthcare systems that use gatekeepers are shown to spend less money on healthcare than systems
that do not. Furthermore, the use of gatekeepers has not led to changes in the diagnostic or
management style of the physician, nor their coordination of referral care. Putting gatekeepers into
practice might be an attractive way to reduce the financial burden of the healthcare system and
increase sustainability.
In summary, the findings and recommendations provided in the three major chapters of this policy
paper concern major cornerstones in the future of healthcare. Improving coordination of care,
personalizing medicine through technological advancements, and promoting shared decision-making
will contribute to high quality and sustainable care. The recommendations have been based on one
single aim: person-centered care.
The future of healthcare: advancing person-centered care towards high quality and sustainability
while addressing the unique needs of the growing elder population.

24

C$3$2$"($0
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