Methods
For this study, the method of meta-ethnography following the style of Noblit and Hare [ 15 ] was chosen to collect and analyse the essential knowledge of
patients’ reasons for CAM use and to synthesise and interpret patients’
concepts of individualised medicine. A meta-ethnography, a form
“pooling” findings of qualitative research, is a meta-analysis with a
comparative textual analysis of published qualitative field studies [ 15 ]. There remains controversy as to which meta-synthesis method can be best
used for diverse sorts of qualitative research projects such as the one described
here. In this case, from various methods of meta-synthesis, we determined the
meta-ethnography with its interpretive orientation, to be the best approach. Because
patients’ concepts, expectations or perceptions of individualised medicine
were not readily available in primary studies at the time the research question was
raised, we collected and analysed in a meta-ethnography patients’ previously
explored reasons for CAM use, and subsequently interpreted patients’ concepts
of individualised medicine. The research project included three major sequences (1)
a systematic literature search of 67 electronic databases and the subsequent
appraisal of selected publications of qualitative studies investigating
patients’ reasons for seeking CAM therapies, with inclusion eligibility
determined using defined criteria (2) a conduction of a meta-ethnographic study
following Noblit and Hare’s [ 15 ] method to translate the key concepts of why patients use CAM; and (3) a
line-of-argument approach for the synthesis and interpretation of patients’
concepts of individualised medicine.
Following Noblit and Hare, our meta-ethnographic method included seven phases that
overlapped and were repeated as the synthesis proceeded (Table 1 ).
Results
In the first sequence of the research project a total of 9,578 relevant articles were
found, of which 3,615 were screened on the basis of abstracts and titles.
Sixty-three full publications were analysed according to the predefined inclusion
and exclusion criteria (Table 1 ). Of these 63 papers, a
total of 25 publications were excluded after full text analysis and 38 publications
were appraised with a quality assessment checklist. An additional eight publications
were excluded following the quality assessment performed by two members of the
research team working independently Further details about the literature search
results are listed in the Additional file 2 . The remaining
30 studies that we synthesised in our meta-ethnography originated mostly in the
United States, the United Kingdom or Australia. The majority of these 30 studies
consisted of studies of cancer patients or of patients with chronic diseases.
Characteristics of the studies included in the meta-ethnography are presented in
Table 2 . Of the 30 studies, 27 studies reported
results of patients using various CAM modalities. Two of the studies we examined
reported the use of meditation and prayer, and one study reported the use of
body-based therapies (e.g., massage therapy). Most studies used a qualitative
descriptive design and collected data using semi-structured interviews. Study themes
were determined to be roughly similar, which Noblit and Hare expressed as
“reciprocal” [ 15 ].
The reciprocal translation of reasons for CAM use, representing the second sequence
of the research project, resulted in the following secondary-order themes:
“time”, “holism”, “tailored care”,
“teamwork and equal relationship”, “new avenues”,
“facilitating transformative effect”, “support for self-healing
power”, “gentle and natural treatment”, “less side
effects”, “autonomy and active control”, “dimensions of
wellbeing” and “accessibility and legitimization”. The translated
secondary-order themes were the base for the line-of argument synthesis and the
interpretation of patients’ concepts of individualised medicine.
The third sequence of the research project was a “line of argument”
synthesis and a higher-order interpretation from the reciprocal translation.
The six third-order concepts interpreted from the data are shown in Figure 1 . The synthesis indicates that patients’ value
individualised medicine in terms of a humanistic approach, expressing the wish for
an opportunity for “personal growth”, a “holistic” form of
care, ease of “self-activation” and “integrative care”, a
therapist- patient-“alliance” in the sense of establishing a healing
relationship and “wellbeing”. These concepts were not exclusive, and
they overlapped in certain dimensions and sub-themes. The third-order concepts with
the respective dimensions and sub-themes resulting from the “lines-of-argument
synthesis” are presented below, with representative quotes from the original
papers shown in Table 3 .
Patients’ concepts of “personal growth” stood for a personal
transformation process that was expected to be induced or facilitated by the
healthcare encounter and that encompassed a reassessment of disease and life
histories, an identification of causes, an understanding of the disease, a
re-evaluation of attitudes and priorities and a way to find a fitting philosophy
of health and life. It also comprised an exploration and implementation of
lifestyle changes, including elements such as increased body awareness and
spirituality and an appreciation of nature and surroundings. This concept could
be further subdivided into the four dimensions described below.
Patients’ motivation to seek individualised care and to visit CAM
practitioners in the event of a serious or life-threatening illness included
the need to find time, space, opportunity and support to interpret and
accept the illness emotionally. Here, the emotional and existential
consternation caused by disease requires a thorough reassessment of
one’s personal situation [ 16 - 28 ].
Serious illness often led to questions related to the meaning of life and
disease. In their attempt to cope with such questions, people might seek
person-centred care to receive assistance. Some patients understood their
illness to be a teacher, which could lead to an effort to integrate their
disease into the biographical context of their personality [ 16 , 17 , 23 , 26 , 29 , 30 ].
The establishment of a correlation between physical symptoms and
psychological, biographical and existential aspects was often understood by
patients to be a
Meta-ethnography steps according to Noblit and Hare [ 15 ]
refreshing exercise and could be perceived as person-centred care when the
therapist provides the time and support for such discussion during the
patient’s visit [ 16 , 17 , 19 - 24 , 26 , 29 ].
The dimension of “transformation” reflected the possibility of
personal development and a transformation of life; here, spiritual aspects
seem to have become more relevant to patients reporting this dimension [ 18 , 27 , 30 , 31 ]. Patients appreciated an individualised approach in which they
experienced support in inner development and which could have redefined
their position from recipient (of treatment) to that of an explorer as their
disease progressed [ 16 , 17 , 19 - 28 ]. With person-centred care patients felt empowered to develop new
directions for improving their lives and lifestyle [ 17 , 26 , 28 , 30 ].
The most common theme among all 30 studies was that of “holism”. An
individual approach was identified by CAM patients with a whole-person approach
or a holistic approach. Instead of singular accounts for biomedical factors and
isolated symptoms, patients reported that healthcare providers should take into
consideration a wider range of factors or causes based on patients’
opinions; these concerns included a variety of physical, psychological,
spiritual, social and economic factors. Most patients acknowledged a wide
concept of care, which opens up a greater number of dimensions than pure
pharmacological treatment alone. This concept could be further subdivided into
the two dimensions described below.
Holism reflects a comprehensive account of various levels of treatment. An
individualised therapeutic approach could include various interactions with
different medical specialties (e.g., surgeon, radiologist, general
practitioner, psychologist, physiotherapist) and patient lifestyle aspects
such as nutrition and exercise therapy [ 16 - 18 , 21 , 24 , 29 , 32 - 37 ].
Patients acknowledged the importance of respect of their whole person’s
state, specifically referring to their desire for “an individual
approach to be seen as a whole person” [ 19 ] rather than as composites of various biomedical attributes or
isolated symptoms. Likewise, patients expected their therapists or
physicians to approach them with a broad holistic world-view that integrated
their physical, psychological, spiritual, social and economic dimensions of
life.
Here, the concept of individualised medicine merges with integrative care.
“Integrative care” refers to the patients’ need for choosing
amongst different treatments options, including treatment alternatives offered
by conventional medicine (COM) or combinations with CAM modalities. Patients had
the desire for unique treatments that suited them personally, specifically
through the option of selecting from a wide variety of modalities. Patients also
wished to be explorers of their own health, capable of deciding for themselves
among various CAM and COM modalities.
In the majority of cases, patients sought conventional treatment of their disease
and appreciated the advances of modern medicine. However, they also wanted to
have room for integrating into their care different models or healthcare
options. This type of personal problem-solving or coping strategy using both
complementary and conventional methods highlighted patients’ willingness
to seek out individualised opportunities. Over and above that, integrative care
reflected patients’ desire for better access to CAM therapies. This
concept also represented patients’ desire to discuss CAM use openly with
COM providers without being dismissed or not taken seriously. The
“integrative care” concept could be further subdivided into the
dimensions described below.
Patients wanted their individual life and disease situation respected with a
person-centred treatment approach which suited their specific personal needs
in diagnosis, risk information and treatment. They appreciated
providers’ attempts to match appropriate practices and treatments to
their unique problems, values, preferences and life circumstances, including
conventional and complementary methods [ 18 , 26 , 28 , 30 , 32 , 33 ].
Patients perceived the establishment of a treatment protocol involving CAM as
a highly individualised process [ 16 , 26 , 34 - 36 ]. However, patients also felt a responsibility to investigate for
themselves potential side effects of recommended medications and treatments
and through CAM they sought out treatment options that
Main criteria of included studies
Third-order concepts and their relationship: a model of how
patients perceive individualised medicine.
included fewer side effects, even when this interest was not shared by COM
practitioners [ 29 ].
One commonly identified expectation concerning individualised care expressed by
patients who sought help from CAM therapists was the wish for a caring
doctor-patient “alliance”. This concept could be further subdivided
into the two dimensions described below.
A number of papers mentioned time as an important concept related to
patients’ perceptions of individualised care of CAM therapists.
Specifically, patients wanted the undivided attention of their physicians,
individual one-by-one time, the possibility to get additional appointments
also in between regular visits, time to think about different treatment
options seriously before making a decision and the feeling of the individual
of being listened to [ 19 , 32 , 33 , 37 ]. Patients reported that they wished to have sufficient time for
telling their personal history and for discussing health issues and for
asking questions and obtaining appropriate explanations about disease and
treatment options [ 17 , 19 , 20 , 22 , 27 , 32 , 33 , 37 ],[ 38 ].
Patients expected respect from their physician [ 18 , 25 , 33 , 37 - 39 ]; they also asked for guidance [ 19 , 24 , 32 , 34 , 36 , 40 ] and expressed a desire for an emotional bond with their care
providers. The establishment of an effective doctor-patient
“alliance” was directed towards a common goal; avoided
paternalism and stereotypes; included an engaged and caring, empathetic and
non-judgemental attitude on the side of the practitioner; and allowed for
deeper patient understanding and empowerment [ 17 - 19 , 21 , 24 - 27 , 30 , 32 , 34 - 36 , 39 , 40 ].
Patients’ perspective on individualised medicine and their desire for
“self–activation” represented the empowerment of
“personal autonomy” and the “activation of the self-healing
power” of the patient. Here, “personal autonomy” referred to
the patient’s conception of himself or herself as a victim (i.e., an ill
person) as opposed to that of a person who has (re-)gained control over their
treatment and health.
The dimension of gaining or regaining “personal autonomy”
described patients’ wish to be enabled through an individualised
approach of “educational empowerment” to cope with and accept
their own health and medical condition; take responsibility through active
control for their own health; and become actively involved in decision
making related to their condition [ 17 , 22 , 23 , 27 , 38 , 41 ].
Several patients were persuaded that the activation of self-healing resources
might have physiological, psychological, social, spiritual and
quality-of-life benefits. Patients wanted to support their individual
self-healing capacities and subsequently apply CAM to the standard treatment
they received. This corresponds to the salutogenic idea [ 42 ] referring to approaches that support healing processes and
wellbeing rather than fighting factors that cause disease. Correspondingly,
patients wished for their health care providers to support, guide and coach
them in developing and using self-healing techniques. Patients believed that
individualised healthcare enforcing psychological processes which
facilitated hope, positive expectations and feelings, relief of anxiety and
anticipation of improvement could influence physiological processes and
contribute to healing over and above pharmacologically mediated processes [ 17 , 22 , 23 , 27 , 30 , 35 , 38 , 39 ],[ 43 ].
Patients expressed a basic need for health and appreciated the benefits of COM
options for ameliorating and curing disease. However, patients at times
experienced disappointment with COM and subsequently sought out alternative
treatments. In the 30 studies synthesised here, patients turned to CAM and used
alternatives mainly as individually tailored complements to standard medical
treatments in a sense of “wellbeing” or quality of life. Here,
“wellbeing” as a concept of individualised medicine reflected
patients’ wish for a physically and psychologically healthier feeling,
emotional clarification and the relief from chronic symptoms. This concept could
be further subdivided into the four dimensions described below.
Patients’ concepts of individualised medicine
The dimension of maintaining physical wellbeing and functionality (i.e.,
being more active and continuing to work during treatment) was of great
importance to patients. This dimension was related to the life limitations
which an illness can cause and to patients’ hope for possible
improvements brought about with the support of individualised medicine [ 17 , 19 , 20 , 26 , 34 , 43 ].
Patients sought a treatment environment in which they were able to relieve
their tensions. CAM therapists were perceived as making a greater attempt
than COM providers to individualise care so that patients could experience a
relaxed, supportive environment that also attended to the purely hedonistic
aspects of patient care (e.g., relaxing environment with music); also
important to this experience was the provision of therapeutic CAM-based care
throughout the patient encounter. Patients construed this form of
individualised care as not causing stress and as being enjoyable, and as
providing the opportunity for a “time out” from regular
activities [ 17 , 19 , 24 , 26 , 27 , 32 , 39 , 43 - 45 ].
This dimension of “wellbeing” denoted the wish of patients for
individualised natural treatment with fewer side effects. Furthermore,
patients wanted an individualised approach that included CAM treatments as a
natural strategy to deal with harmful treatments and to relieve the side
effects, damage and discomfort caused by conventional treatments [ 17 , 19 , 22 , 23 , 26 , 30 , 34 , 35 ],[ 39 , 41 , 43 , 44 , 46 ].
Some individualised healthcare modalities that triggered self-regulation were
perceived by patients as being stressful at the outset, but patients
expressed that they subsequently experienced a pleasing effect once they had
successfully navigated this temporarily emotional exertive situation.
“Wellbeing” was not synonymous with pure wellness in a
hedonistic sense only, but resulted from deeper conflict solving, in a sense
of personalised care [ 17 , 18 , 27 , 29 ].
Competing
The authors declare that they have no competing interests.
Authors’
All authors contributed to the development of the manuscript. All authors read and
approved the final manuscript.
Background
Rather than referring to “individualised medicine” focusing on
individualised care tailored to patient needs, the concept of “personalised
medicine” in today’s age of genetic research denotes the molecular
biologic specification of individuals [ 1 ]. Current statements on personalised or individualised medicine appear
mainly in the context of research and academic medicine, politics and economics. In
recent years, individualised medicine has become a major research challenge, as
clinicians and researchers have sought to discover more specific and individually
tailored diagnostic tools and treatments for managing cancer, diabetes, and other
common medical conditions [ 2 ]. Complementing this increase in genetic and molecular biological
knowledge a clear trend has arisen towards genome-based individualised medicine;
such genomics-associated discoveries have opened up vast options for health care
systems with regard to patient management. The German Bundestag’s recent
report on the future of “individualised medicine in the healthcare
system” sought to assess the current state of health-related science and
technology and the possible developments and implication associated with
individualised medicine for medical care, health insurance and companies [ 2 , 3 ]. Therein five concepts of individualisation were presented: (1)
individual biomarker-based stratification, (2) genome-based individual
health-related characteristics, (3) genetic biomarkers, (4) individual disease risks
and (5) differential intervention offerings and unique therapeutic items. As a
further delineation, but also as an assignment by definition, “speaking
medicine” (i.e. doctor-patient interaction) was attributed to the holistic
medical approaches of the Complementary and Alternative medicine (CAM) [ 3 ].
However, the question has so far remained unanswered as to whether the current focus
of research and academic medicine, politics and economics on molecular biologic
specification can ameliorate the healthcare needs of patients in a balanced relation
to the invested resources [ 4 , 5 ]. Furthermore, although the aims of innovations in healthcare systems
include improved quality of life and other patient-specific goals, healthcare
providers often neglect sufficiently to discuss with patients realistic expectations
regarding such aims. A research gap has been identified in “that the real
target audience for individualised medicine so far has hardly been questioned about
their preferences” [ 3 ].
Patients’ concerns about this lack of individualised attention and open
dialogue have been borne out in a number of reviews suggesting that patients often
turn to Complementary and Alternative medicine (CAM) because they feel that the
traditional healthcare system does not provide adequate patient-centred care or
individualised physician-patient interactions, or because they are seeking more
holistic or integrative forms of care [ 6 - 8 ]. The published reviews about reasons for CAM use analyse quantitative
studies; at present there is no meta-synthesis of qualitative studies available.
Qualitative studies are applied when methods are needed to understand patients’
subjective experiences and perceptions of healthcare [ 9 - 11 ]. As the nature of clinical knowledge based on quantitative research
methods and statistical analysis can be somewhat limited when individual or
subjective phenomena, contexts of illness or health, or patients specific individual
needs are to be investigated, qualitative methods provide a more thorough approach
for describing personal human behaviour and needs; this is also true for the study
of CAM [ 12 , 13 ].
Since primary qualitative studies sometimes reveal that concepts of person-centred
care are part of the common expectation of patients seeking CAM practitioners [ 14 ], it is reasonable to expect that the accumulated knowledge provided by
qualitative studies can provide an in-depth understanding as to the concepts, ideas,
perceptions, views and expectations of individualised medicine patients have who
turn to CAM. For this reason, we decided to explore patients’ views about
individualised care by analysing their reasons for seeking CAM and subsequently
extract, synthesise and interpret corresponding content from primary qualitative
investigations in a meta-ethnographic study.
The goal of the project was to describe the concepts, expectations and perceptions of
individualised medicine inherent in patients’ reasons for using CAM, as
documented in qualitative studies. To our knowledge, ours is the first publication
to address this important research.
Discussion
This meta-ethnographic study used the three-stage approach of a rigorous literature
search and quality appraisal, a synthesis of qualitative research and an
interpretation of overarching constructs for addressing the research question as to
what concepts of individualised medicine patients have who use complementary
therapies. Although there exist a handful of research projects with qualitative
studies that begin to investigate patients’ notions of personalised medicine, [ 47 - 49 ] the relative dearth of primary studies reporting on this topic required
us to take the indirection with reasons for CAM use as documented in qualitative
studies.
With a meta-ethnographic methodology, our synthesis could proceed from a reciprocal
translation of reasons for CAM use to a higher-order interpretation in the same way
that a primary study might move from a descriptive analysis to an explanatory
analysis [ 50 - 53 ]. Meta-ethnography such as in our study can also be used for understanding
and enriching the discourse on humanistic issues [ 15 , 54 - 56 ].
Other published meta-ethnographic studies differ in their methodology with regard to
the steps we described above. In this project, we tried to stay as close as possible
to the methods suggested by Noblit and Hare [ 15 ]; however, our procedure may add ideas and material for further
clarifications in the development of the meta-ethnographic synthesis procedure.
As is common in qualitative research projects, a key question appeared as to when and
how data saturation was achieved. We discovered that after translating two-thirds of
the studies, no new themes could be found; we even went so far as to extend this
synthesis to the excluded studies to provide the most robust analysis possible, with
the same result. Previously published reviews of specific and individual-preferences
in healthcare and patients’ reasons for turning to CAM report results that are
somewhat comparable to those of our second-order constructs of our meta-ethnographic
study [ 6 - 8 ]. Reasons for patients’ decision to use CAM include the ability to
obtain emotional support, holistic care and information from their chosen provider,
as well as their perception that CAM permits patients to establish a good
therapeutic relationship and cope more effectively with their medical condition(s) [ 7 ]. Other reasons include patients’ beliefs that CAM provides more
personal control and a greater promise of hope than conventional therapies [ 6 ]; previous research has also found that patients appreciate what they
perceive as the ease-of-access of alternatives, respect for the psycho-emotional
aspects of their treatment and increased consultation time associated with CAM
therapies [ 8 ].
Comparing our results of the third sequence of the meta-ethnography, the
interpretation of concepts of “individualised medicine”with the ideas of
research and academic medicine, politics as well as economics, we found that they
differ from the current concept of the genetically and biologically oriented form of
“personalised or individualised medicine”. Presently, there exists no
commonly accepted definition of this form of “individualised medicine”;
the lowest common denominator is actually the “division of patients (groups)
by biomarkers” [ 4 ]. This contrasts considerably with the richness of humanistic issues
associated with the concepts of “individualised medicine” concepts that
we identified in patients reasons for seeking CAM. One dissenting aspect is the
concept of “personal growth”, an effectiveness dimension which describes
patients hope to be empowered by the healthcare encounter in individualised
medicine. In contrast to the concepts of biomarkers and individual disease risks,
the concept of the inner growth as induced by a reassessment of disease and life
history can include growth in spirituality, body awareness and appreciation of
nature and surroundings. In this dimension, patients request an individualised form
of medicine that takes into consideration their wish for “personal
growth”, including emotional disease handling. Successfully adapting to an
illness or to reassess their biography in this way can enable patients to
participate in social activities and feel healthy despite their physical limitations [ 57 ]. Meditation or mindfully presence in a given situation, and,
consequently, the provision of such practices, can help in the search for meaning in
life [ 58 ].
As an example a person-centred approach in fibromyalgia syndrome (FMS) patients of
“respectfully recognizing the patients’ personal and human needs,”
“encouraging the patients’ self-revelation,” “let[ting] the
patient tell their story” and “digesting emotions to [patients’]
illness and life situations” helped patients to identify how suffering might
fit into their individual psychosocial contexts. In particular, there was a need to
help patients understand how suffering might fit into family dynamics and how
associated psychosocial conditions might be ameliorated [ 49 ]. Medical and therapeutic practitioners could thus be asked to support
patients in their endeavour to lead a meaningful life in spite of their disease and
might be urged to bear in mind that patients need therapeutic and social support to
discover their resources in the personal, biographical or spiritual environment to
undertake a development of inner or “personal growth” [ 59 ].
The person-centred approach in FMS noted above coincides with to the dimensions of
“emotional disease handling,” “biographical reassessment”
and “transformation” of our meta-synthesis in the “personal
growth” concept. Moreover, in the biomedical model, diverse symptoms of
diseases such as FMS are often addressed separately from their interconnectedness
and linkages to the patient’s individualised bio-psychosocial factors [ 49 ]. Likewise, our concept of “personal growth” is strongly
interrelated with that of “holism”, which the patients in our
meta-synthesis associated with “individualised medicine”. For the
patients it is important not to regard health problems in isolation; rather, they
should be considered in conjunction [ 60 ]. A holistic or integrative view requires that psychological and physical
treatment interdependences must work together in order to be successful [ 60 ]. In opposition to the concept of “holism”, the treatment
based on individual biomarker-based stratification and genome-based information does
not reflect the patients’ need to connect the disease with bio-psychosocial
factors.
Also of note is that from our meta-ethnographic study it is apparent that patients
like to assume responsibility for their care and that they have a wish for
“personal autonomy”, which may come about via “educational
empowerment” and/or “active control”. This is also manifested in
patients’ desire for knowledge-building in matters of their disease. The wish
of patients for “self-activation” is also related to triggering
intrinsic self-healing capacities by supporting the immune system and mental health
resources, as expressed in the subtheme of “activation of self-healing
power”.
In contrast, the genome-based individualised healthcare that is becoming more
prominent in today’s traditional medical fields connects patients’ own
activity more with extrinsic factors by avoiding genetic or metabolic risks. In the
patients’ view of individualized medicine with regard to
“self–activation”, CAM was perceived by patients as allowing for
“individual responsibility for health” [ 61 ]. Also, according to Kienle et al. (2011), patients seek CAM therapies
with the aim to support and stimulate auto-protective and (auto-)salutogenic
potentials, mostly with the active cooperation of the patient or of his/her body [ 62 ]. Healthcare providers must consider patients’ own experience and
own body knowledge as important information. The salutogenic potential as
“enabling the patient to swim” stands for the mobilisation of individual
resources for more autonomy [ 42 , 62 ], which can be comparably expressed as the dimension of “personal
autonomy” in our meta-ethnography results. The determination of individual
disease risks as one goal of genome-based individualised medicine with its
preliminary fixing to a possible disease does not consider the mobilisation of
individual biological, psychosocial and spiritual resources.
Interestingly, as reflected in our study, a portion of what is normally called the
placebo effect may be attributed to the “activation of self-healing
power,”—a fact often neglected and not considered in the concept of
disease risk determination. Another dimension of “personal autonomy,”
namely, “educational empowerment” is a reason for the appeal of
complementary medicine [ 63 ]. Lay people suffer from the circumstance that detailed technological
advances in medicine have prohibited them from acquiring knowledge about their
medical diagnosis [ 63 ]. Researchers potentially investigate and collect results of
individuals’ biomarker-based stratification and genome-based health-related
characteristics only. The knowledge and actions required for maintaining health may
be controlled by persons other than individual patients who, in contrast, want to be
empowered for their own health [ 64 ], as expressed in patients’ stated desire for “activation of
self-healing power”.
“Self-activation” coincides here with the third-order concept of
“alliance”, which reflects the subthemes of “time” and
“healing relationship” in the context of the doctor-patient-interaction.
These subthemes are often referred to by patients as core features for
individualised care and as motivation to visit CAM providers. Thus, it should be
ensured that “speaking medicine” (i.e., doctor-patient interaction),
which includes the time a physician needs for detailed information and guidance is
sufficiently covered by insurers and other medical health-payment systems.
Other studies show also that a patient-centred communication style of COM physicians
is rated as “very important” by patients [ 65 ] and the provision of sufficient information and shared decision-making
options are top patient priorities [ 66 ]. Another example, this one of personalised health care for patients with
spinal cord injury, demonstrated that when a closer relationship with staff was
formed, the healthcare professionals became an essential support factor; this study
also found that providing patients with explicit information of patients about their
condition and prognosis was necessary for their accepting the realities of their
injury [ 48 ].
Consultations that last longer are perceived as being associated with a
patient-centred communication style, or as a “doctor’s interest in you
as a person” [ 48 , 65 , 66 ], enabling patients to realise “educational empowerment” as
expressed through the concept of “self–activation”. In the view of
genome-based individualised medicine, it could be debated whether the idea of a
commercially available determination of risk factors through genetic diagnostic
measurements empowers the individuals to seek more knowledge about their own
genomes, in turn enabling them to encourage their doctors to also consider this
information. The effective use of such diagnostic tools could empower patients to
work with their healthcare providers to determine the most suitable prevention or
treatment plan [ 67 ].
Furthermore, the findings from our meta-ethnographic study show that patients
perceive medicine as highly individualised and personalised when they are able to
connect different treatment options according to their own personal preferences;
this is expressed in our third-order concept of “integrative care”.
Here, this concept is associated with the “alliance” concept and the
subtheme of establishing a “healing relationship”. “Healing
relationship” stands also for shared decision making in treatment agendas
integrating COM and CAM. The process of shared decision making is currently the most
discussed way to take into account individual preferences. However it must be noted,
that complementary treatment options are still neglected in the development of
decision aids [ 68 ], although patients prefer to integrate CAM into their “tailored
care” to manage their individual medical conditions [ 69 ]. Again, in this context the link between “individualised
medicine” and “integrative care” can be detected [ 1 ]. One of the greatest skills of a doctor is individualisation, including
subtle changes to therapy and how this therapy is delivered by a skilled healthcare
provider. This influences the subjective patient’s response. A therapist who
tailors his treatment will have better patients’ outcomes because she or he
can more effectively embrace the meaning of the therapeutic response [ 70 ]. Over and above that, “integrative care”, including both CAM
and conventional therapies for chronic diseases, could have the potential to improve
a costly and fragmented delivery system [ 47 ].
On the other hand “tailored care” can coincide with gene-based risk
information or tests that are customised to personal biological characteristics.
Genome-based diagnostic measurements - and, consequently accurate diagnosis,
specific treatments and adjusted medication doses - correlate closely with
patients’ perspective of “tailored care”. However, there is a need
for comprehensible information on the results of such measurements and the meaning
of the diagnosis; patients need physicians to provide a medical explanation for lay
people. With educational support, patients even prefer to calculate and interpret
event rates and the number needed to treat or to harm [ 71 ]. We argue that gene-based risk information must therefore be accompanied
by the concept of “educational empowerment”. A central dimension of
“educational empowerment” is the provision of evidence based patient
information which enables patients to judge and to decide according to their own
preferences [ 71 , 72 ].
The final third-order concept of individualised medicine “wellbeing” as
discussed in our study is often mentioned in the included literature as the desire
for both psychological and physical “wellbeing”. Patients expressed a
strong desire for individualised care provided in a familiar environment. When such
care was not available, patients found it difficult to meet even basic physical
needs [ 73 ]. A more familiar and less clinically medicalised environment is thus
reflected as individualised care [ 48 ]. Patients seek CAM therapies as comparatively harmless ways to support
the body’s healing capabilities [ 70 , 74 ]. The patients in our synthesised studies also sought support for the
sometimes difficult work of emotional self-regulation in the dimension of
“wellbeing after emotional clearing”.
The provision of functional ability is regarded as a fundamental part of
“physical wellbeing”. Here, the bio-molecular concepts of differential
interventions offers effective treatment and the reduction of side effects as well
as unique therapeutic items (e.g., prostheses, implants adapted as a truly
individual), those enable patients to continue engaging in normal activities in a
sense of “wellbeing”. Moreover, regarding the desire for fewer side
effects, patients’ expectations merge with the goals of genome-based
individualised medicine in the search for an exact diagnosis and targeted treatment.
It could be debated that the introduction of pharmacogenomic concepts into the
practice of herbal medicine could be effective in reducing incidences of
CAM-associated therapy failures. Furthermore, the phenomenon of psychosocial
genomics, which explores the sophisticated relationship between gene expression,
neurogenesis and healing practices, has the potential to reconcile biomedicine with
various healing experiences brought about CAM [ 75 ].
In summary, the patients described in the included qualitative studies have a
humanistic concept of “individualised” medicine that
entails much more than individualised specifications on the molecular level, such as
is the case in genome-based “personalised medicine”. Similar to the
above-discussed patients’ concepts of “individualised medicine”,
the German Bundestag’s report on the future of individualised medicine
reflects our finding that the patients may have other preferences (e.g., emotional
dimension, handling of the disease) than the genome-based concepts [ 3 ]. In addition, a clear distinction has been defined, namely that
“individual medicine does not have any contribution for disease handling and
the particular psychological burden which the probabilistic-predictive information
of the individual medicine implies” [ 3 ]. With this statement, the report’s authors referred to the need
that “individualised medicine” should be embedded in the context of
“speaking medicine” (i.e., doctors-patient interaction) and
psycho-social support [ 3 ].
Furthermore, in May 2012, a number of German experts discussed at the annual meeting
of the German Ethics Council the expansion/addition of biologically targeted
“individualised medicine” to psychological, social, biographical and
spiritual aspects. In a joint effort of such medical research and care, the patient
would benefit from - rather than being a victim - of progress [ 76 ].
All of the studies included in our meta-ethnographic study investigated patients
who used CAM as a complement to COM. We also included studies with focus groups
interviewing non-CAM users being asked about their perception of CAM. The
patients of the identified studies were mostly COM users in the beginning of
their disease who turned to CAM for the reasons discussed above. Therefore, the
investigated patient samples seem to be well balanced and can be interpreted as
representing the “usual” patient population, as far as this is
possible in such a qualitative approach. However, it must be emphasized that
patients who turn to CAM modalities are more likely to seek out a healthy
lifestyle or preventive measures than non-CAM users [ 77 ].
We must also consider that some of the concepts discussed in this study may
overestimate patients’ individual perspectives as compared to the whole
patient population. However, as the general trend towards more complementary and
integrative health care is increasingly acknowledged as an expression of what is
felt to be missing in COM, healthcare providers and decision makers should take
these needs seriously as they seek to develop a modern concept of individualised
medicine compatible with patients’ needs.
Conclusions
Based on the results of our meta-ethnographic study, it can be stated that there
exists a difference between the concept of individualisation from the patient
perspective and the present notion of “personalised or individualised
medicine” on the basis of genetics and biology. Patients’ core
expectations for individualised care are a respect for “personal
growth”, a “holistic” focus, a
doctor-patient-“alliance”, “self-activation”,
“integrative care” and “wellbeing”. There is a congruence of
patients’ expectations with the goals of genome-based individualised medicine
in the search for a reduction of side effects and functional ability, which would in
turn enable patients to continue engaging in normal activities. In addition,
detailed diagnostic measurements and consequently suited treatments, as well as
adjusted medication doses correlated closely with patients’ perspective of
“tailored care”. Furthermore, patients’ knowledge of genomic risk
factors could be reflected their concept of “educational
empowerment”.
At present, alternative other patient ideas related to individualised medicine are
rarely reflected in genome-based individualisation concepts. At the individual level
of patient perceptions, the concepts of individualised and integrated medicine
merge. For these reasons, a comprehensive concept of “individualised and
integrative health care” could be formed to include both the genome-based
perspective of individualised medicine and the more holistic perspective of
individualisation frequently expressed by patients. Such a comprehensive approach to
medicine would provide patients the opportunity to share their commitment to
“personal growth” with their healthcare provider, as well as a
“holistic” view and a willingness to engage in
“self-activation” with “educational empowerment”; this
approach could be characterized by a doctor-patient “alliance” in the
sense of “time” and the “healing relationship” and the
freedom of “integrative care” and “wellbeing” through fewer
side effects and increased functional ability. When allocating funds for research
and health budgets, patients’ notions with regard to individual treatment
should play an important role in the pursuit of a high-quality healthcare
system.
Pre Publication
The pre-publication history for this paper can be accessed here:
http://www.biomedcentral.com/1472-6882/13/124/prepub
Supplementary Material
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