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Individualised medicine from the perspectives of patients using complementarytherapies: a meta-ethnography approach
BMC Complementary and Alternative Medicinevolume 13, Article number: 124 (2013)
Personalised (or individualised) medicine in the days of genetic researchrefers to molecular biologic specifications in individuals and not to aresponse to individual patient needs in the sense of person-centredmedicine. Studies suggest that patients often wish for authenticallyperson-centred care and personal physician-patient interactions, and thatthey therefore choose Complementary and Alternative medicine (CAM) as apossibility to complement standard care and ensure a patient-centredapproach. Therefore, to build on the findings documented in thesequalitative studies, we investigated the various concepts of individualisedmedicine inherent in patients’ reasons for using CAM.
We used the technique of meta-ethnography, following a three-stage approach:(1) A comprehensive systematic literature search of 67 electronic databasesand appraisal of eligible qualitative studies related to patients’reasons for seeking CAM was carried out. Eligibility for inclusion wasdetermined using defined criteria. (2) A meta-ethnographic study wasconducted according to Noblit and Hare's method for translating key themesin patients’ reasons for using CAM. (3) A line-of-argument approachwas used to synthesize and interpret key concepts associated withpatients’ reasoning regarding individualized medicine.
(1) Of a total of 9,578 citations screened, 38 studies were appraised with aquality assessment checklist and a total of 30 publications were included inthe study. (2) Reasons for CAM use evolved following a reciprocaltranslation. (3) The line-of-argument interpretations of patients’concepts of individualised medicine that emerged based on the findings ofour multidisciplinary research team were “personal growth”,“holism”, “alliance”, “integrativecare”, “self-activation” and “wellbeing”.
The results of this meta-ethnographic study demonstrate that patients’notions of individualised medicine differ from the current idea ofpersonalised genetic medicine. Our study shows that the“personal” patients’ needs are not identified with aspecific high-risk group or with a unique genetic profile in the sense ofgenome-based “personalised” or “individualised”medicine. Thus, the concept of individualised medicine should include thehumanistic approach of individualisation as expressed in concepts such as“personal growth”, “holistic” or “integrativecare”, doctor-patient “alliance”,“self-activation” and “wellbeing” needs. This shouldalso be considered in research projects and the allocation of healthcareresources.
Rather than referring to “individualised medicine” focusing onindividualised care tailored to patient needs, the concept of “personalisedmedicine” in today’s age of genetic research denotes the molecularbiologic specification of individuals . Current statements on personalised or individualised medicine appearmainly in the context of research and academic medicine, politics and economics. Inrecent years, individualised medicine has become a major research challenge, asclinicians and researchers have sought to discover more specific and individuallytailored diagnostic tools and treatments for managing cancer, diabetes, and othercommon medical conditions . Complementing this increase in genetic and molecular biologicalknowledge a clear trend has arisen towards genome-based individualised medicine;such genomics-associated discoveries have opened up vast options for health caresystems with regard to patient management. The German Bundestag’s recentreport on the future of “individualised medicine in the healthcaresystem” sought to assess the current state of health-related science andtechnology and the possible developments and implication associated withindividualised 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 individualhealth-related characteristics, (3) genetic biomarkers, (4) individual disease risksand (5) differential intervention offerings and unique therapeutic items. As afurther delineation, but also as an assignment by definition, “speakingmedicine” (i.e. doctor-patient interaction) was attributed to the holisticmedical approaches of the Complementary and Alternative medicine (CAM) .
However, the question has so far remained unanswered as to whether the current focusof research and academic medicine, politics and economics on molecular biologicspecification can ameliorate the healthcare needs of patients in a balanced relationto the invested resources [4, 5]. Furthermore, although the aims of innovations in healthcare systemsinclude improved quality of life and other patient-specific goals, healthcareproviders often neglect sufficiently to discuss with patients realistic expectationsregarding such aims. A research gap has been identified in “that the realtarget audience for individualised medicine so far has hardly been questioned abouttheir preferences” .
Patients’ concerns about this lack of individualised attention and opendialogue have been borne out in a number of reviews suggesting that patients oftenturn to Complementary and Alternative medicine (CAM) because they feel that thetraditional healthcare system does not provide adequate patient-centred care orindividualised physician-patient interactions, or because they are seeking moreholistic or integrative forms of care [6–8]. The published reviews about reasons for CAM use analyse quantitativestudies; 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 researchmethods and statistical analysis can be somewhat limited when individual orsubjective phenomena, contexts of illness or health, or patients specific individualneeds are to be investigated, qualitative methods provide a more thorough approachfor describing personal human behaviour and needs; this is also true for the studyof CAM [12, 13].
Since primary qualitative studies sometimes reveal that concepts of person-centredcare are part of the common expectation of patients seeking CAM practitioners , it is reasonable to expect that the accumulated knowledge provided byqualitative studies can provide an in-depth understanding as to the concepts, ideas,perceptions, views and expectations of individualised medicine patients have whoturn to CAM. For this reason, we decided to explore patients’ views aboutindividualised care by analysing their reasons for seeking CAM and subsequentlyextract, synthesise and interpret corresponding content from primary qualitativeinvestigations in a meta-ethnographic study.
The goal of the project was to describe the concepts, expectations and perceptions ofindividualised medicine inherent in patients’ reasons for using CAM, asdocumented in qualitative studies. To our knowledge, ours is the first publicationto address this important research.
For this study, the method of meta-ethnography following the style of Noblit and Hare  was chosen to collect and analyse the essential knowledge ofpatients’ 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 acomparative textual analysis of published qualitative field studies . There remains controversy as to which meta-synthesis method can be bestused for diverse sorts of qualitative research projects such as the one describedhere. In this case, from various methods of meta-synthesis, we determined themeta-ethnography with its interpretive orientation, to be the best approach. Becausepatients’ concepts, expectations or perceptions of individualised medicinewere not readily available in primary studies at the time the research question wasraised, we collected and analysed in a meta-ethnography patients’ previouslyexplored reasons for CAM use, and subsequently interpreted patients’ conceptsof individualised medicine. The research project included three major sequences (1)a systematic literature search of 67 electronic databases and the subsequentappraisal of selected publications of qualitative studies investigatingpatients’ reasons for seeking CAM therapies, with inclusion eligibilitydetermined using defined criteria (2) a conduction of a meta-ethnographic studyfollowing Noblit and Hare’s  method to translate the key concepts of why patients use CAM; and (3) aline-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 thatoverlapped and were repeated as the synthesis proceeded (Table 1).
In the first sequence of the research project a total of 9,578 relevant articles werefound, of which 3,615 were screened on the basis of abstracts and titles.Sixty-three full publications were analysed according to the predefined inclusionand exclusion criteria (Table 1). Of these 63 papers, atotal of 25 publications were excluded after full text analysis and 38 publicationswere appraised with a quality assessment checklist. An additional eight publicationswere excluded following the quality assessment performed by two members of theresearch team working independently Further details about the literature searchresults are listed in the Additional file 2. The remaining30 studies that we synthesised in our meta-ethnography originated mostly in theUnited States, the United Kingdom or Australia. The majority of these 30 studiesconsisted of studies of cancer patients or of patients with chronic diseases.
Characteristics of the studies included in the meta-ethnography are presented inTable 2. Of the 30 studies, 27 studies reportedresults of patients using various CAM modalities. Two of the studies we examinedreported the use of meditation and prayer, and one study reported the use ofbody-based therapies (e.g., massage therapy). Most studies used a qualitativedescriptive design and collected data using semi-structured interviews. Study themeswere determined to be roughly similar, which Noblit and Hare expressed as“reciprocal” .
The reciprocal translation of reasons for CAM use, representing the second sequenceof 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-healingpower”, “gentle and natural treatment”, “less sideeffects”, “autonomy and active control”, “dimensions ofwellbeing” and “accessibility and legitimization”. The translatedsecondary-order themes were the base for the line-of argument synthesis and theinterpretation 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’ valueindividualised medicine in terms of a humanistic approach, expressing the wish foran opportunity for “personal growth”, a “holistic” form ofcare, ease of “self-activation” and “integrative care”, atherapist- patient-“alliance” in the sense of establishing a healingrelationship and “wellbeing”. These concepts were not exclusive, andthey overlapped in certain dimensions and sub-themes. The third-order concepts withthe respective dimensions and sub-themes resulting from the “lines-of-argumentsynthesis” are presented below, with representative quotes from the originalpapers shown in Table 3.
Patients’ concepts of “personal growth” stood for a personaltransformation process that was expected to be induced or facilitated by thehealthcare encounter and that encompassed a reassessment of disease and lifehistories, an identification of causes, an understanding of the disease, are-evaluation of attitudes and priorities and a way to find a fitting philosophyof health and life. It also comprised an exploration and implementation oflifestyle changes, including elements such as increased body awareness andspirituality and an appreciation of nature and surroundings. This concept couldbe further subdivided into the four dimensions described below.
Emotional disease handling
Patients’ motivation to seek individualised care and to visit CAMpractitioners in the event of a serious or life-threatening illness includedthe need to find time, space, opportunity and support to interpret andaccept the illness emotionally. Here, the emotional and existentialconsternation caused by disease requires a thorough reassessment ofone’s personal situation [16–28].
Serious illness often led to questions related to the meaning of life anddisease. In their attempt to cope with such questions, people might seekperson-centred care to receive assistance. Some patients understood theirillness to be a teacher, which could lead to an effort to integrate theirdisease into the biographical context of their personality [16, 17, 23, 26, 29, 30].
The establishment of a correlation between physical symptoms andpsychological, biographical and existential aspects was often understood bypatients to be a
The dimension of “transformation” reflected the possibility ofpersonal development and a transformation of life; here, spiritual aspectsseem to have become more relevant to patients reporting this dimension [18, 27, 30, 31]. Patients appreciated an individualised approach in which theyexperienced support in inner development and which could have redefinedtheir position from recipient (of treatment) to that of an explorer as theirdisease progressed [16, 17, 19–28]. With person-centred care patients felt empowered to develop newdirections for improving their lives and lifestyle [17, 26, 28, 30].
The most common theme among all 30 studies was that of “holism”. Anindividual approach was identified by CAM patients with a whole-person approachor a holistic approach. Instead of singular accounts for biomedical factors andisolated symptoms, patients reported that healthcare providers should take intoconsideration 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 wideconcept of care, which opens up a greater number of dimensions than purepharmacological treatment alone. This concept could be further subdivided intothe two dimensions described below.
Interdependencies of various treatments
Holism reflects a comprehensive account of various levels of treatment. Anindividualised therapeutic approach could include various interactions withdifferent medical specialties (e.g., surgeon, radiologist, generalpractitioner, psychologist, physiotherapist) and patient lifestyle aspectssuch as nutrition and exercise therapy [16–18, 21, 24, 29, 32–37].
Respect of the whole person’s state
Patients acknowledged the importance of respect of their whole person’sstate, specifically referring to their desire for “an individualapproach to be seen as a whole person”  rather than as composites of various biomedical attributes orisolated symptoms. Likewise, patients expected their therapists orphysicians to approach them with a broad holistic world-view that integratedtheir physical, psychological, spiritual, social and economic dimensions oflife.
Here, the concept of individualised medicine merges with integrative care.“Integrative care” refers to the patients’ need for choosingamongst different treatments options, including treatment alternatives offeredby conventional medicine (COM) or combinations with CAM modalities. Patients hadthe desire for unique treatments that suited them personally, specificallythrough the option of selecting from a wide variety of modalities. Patients alsowished to be explorers of their own health, capable of deciding for themselvesamong various CAM and COM modalities.
In the majority of cases, patients sought conventional treatment of their diseaseand appreciated the advances of modern medicine. However, they also wanted tohave room for integrating into their care different models or healthcareoptions. This type of personal problem-solving or coping strategy using bothcomplementary and conventional methods highlighted patients’ willingnessto seek out individualised opportunities. Over and above that, integrative carereflected patients’ desire for better access to CAM therapies. Thisconcept also represented patients’ desire to discuss CAM use openly withCOM providers without being dismissed or not taken seriously. The“integrative care” concept could be further subdivided into thedimensions described below.
Patients wanted their individual life and disease situation respected with aperson-centred treatment approach which suited their specific personal needsin diagnosis, risk information and treatment. They appreciatedproviders’ attempts to match appropriate practices and treatments totheir unique problems, values, preferences and life circumstances, includingconventional and complementary methods [18, 26, 28, 30, 32, 33].
Integration of CAM and COM
Patients perceived the establishment of a treatment protocol involving CAM asa highly individualised process [16, 26, 34–36]. However, patients also felt a responsibility to investigate forthemselves potential side effects of recommended medications and treatmentsand through CAM they sought out treatment options that
included fewer side effects, even when this interest was not shared by COMpractitioners .
One commonly identified expectation concerning individualised care expressed bypatients who sought help from CAM therapists was the wish for a caringdoctor-patient “alliance”. This concept could be further subdividedinto the two dimensions described below.
A number of papers mentioned time as an important concept related topatients’ 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 appointmentsalso in between regular visits, time to think about different treatmentoptions seriously before making a decision and the feeling of the individualof being listened to [19, 32, 33, 37]. Patients reported that they wished to have sufficient time fortelling their personal history and for discussing health issues and forasking questions and obtaining appropriate explanations about disease andtreatment options [17, 19, 20, 22, 27, 32, 33, 37],.
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 careproviders. The establishment of an effective doctor-patient“alliance” was directed towards a common goal; avoidedpaternalism and stereotypes; included an engaged and caring, empathetic andnon-judgemental attitude on the side of the practitioner; and allowed fordeeper 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-healingpower” of the patient. Here, “personal autonomy” referred tothe patient’s conception of himself or herself as a victim (i.e., an illperson) as opposed to that of a person who has (re-)gained control over theirtreatment and health.
The dimension of gaining or regaining “personal autonomy”described patients’ wish to be enabled through an individualisedapproach of “educational empowerment” to cope with and accepttheir own health and medical condition; take responsibility through activecontrol for their own health; and become actively involved in decisionmaking related to their condition [17, 22, 23, 27, 38, 41].
Activation of self-healing power
Several patients were persuaded that the activation of self-healing resourcesmight have physiological, psychological, social, spiritual andquality-of-life benefits. Patients wanted to support their individualself-healing capacities and subsequently apply CAM to the standard treatmentthey received. This corresponds to the salutogenic idea  referring to approaches that support healing processes andwellbeing rather than fighting factors that cause disease. Correspondingly,patients wished for their health care providers to support, guide and coachthem in developing and using self-healing techniques. Patients believed thatindividualised healthcare enforcing psychological processes whichfacilitated hope, positive expectations and feelings, relief of anxiety andanticipation of improvement could influence physiological processes andcontribute to healing over and above pharmacologically mediated processes [17, 22, 23, 27, 30, 35, 38, 39],.
Patients expressed a basic need for health and appreciated the benefits of COMoptions for ameliorating and curing disease. However, patients at timesexperienced disappointment with COM and subsequently sought out alternativetreatments. In the 30 studies synthesised here, patients turned to CAM and usedalternatives mainly as individually tailored complements to standard medicaltreatments in a sense of “wellbeing” or quality of life. Here,“wellbeing” as a concept of individualised medicine reflectedpatients’ wish for a physically and psychologically healthier feeling,emotional clarification and the relief from chronic symptoms. This concept couldbe further subdivided into the four dimensions described below.
The dimension of maintaining physical wellbeing and functionality (i.e.,being more active and continuing to work during treatment) was of greatimportance to patients. This dimension was related to the life limitationswhich an illness can cause and to patients’ hope for possibleimprovements 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 relievetheir tensions. CAM therapists were perceived as making a greater attemptthan COM providers to individualise care so that patients could experience arelaxed, supportive environment that also attended to the purely hedonisticaspects of patient care (e.g., relaxing environment with music); alsoimportant to this experience was the provision of therapeutic CAM-based carethroughout the patient encounter. Patients construed this form ofindividualised care as not causing stress and as being enjoyable, and asproviding the opportunity for a “time out” from regularactivities [17, 19, 24, 26, 27, 32, 39, 43–45].
Avoidance of adverse drug or treatment effects
This dimension of “wellbeing” denoted the wish of patients forindividualised natural treatment with fewer side effects. Furthermore,patients wanted an individualised approach that included CAM treatments as anatural strategy to deal with harmful treatments and to relieve the sideeffects, damage and discomfort caused by conventional treatments [17, 19, 22, 23, 26, 30, 34, 35],[39, 41, 43, 44, 46].
Wellbeing after emotional clearing
Some individualised healthcare modalities that triggered self-regulation wereperceived by patients as being stressful at the outset, but patientsexpressed that they subsequently experienced a pleasing effect once they hadsuccessfully navigated this temporarily emotional exertive situation.“Wellbeing” was not synonymous with pure wellness in ahedonistic sense only, but resulted from deeper conflict solving, in a senseof personalised care [17, 18, 27, 29].
This meta-ethnographic study used the three-stage approach of a rigorous literaturesearch and quality appraisal, a synthesis of qualitative research and aninterpretation of overarching constructs for addressing the research question as towhat concepts of individualised medicine patients have who use complementarytherapies. Although there exist a handful of research projects with qualitativestudies that begin to investigate patients’ notions of personalised medicine, [47–49] the relative dearth of primary studies reporting on this topic requiredus to take the indirection with reasons for CAM use as documented in qualitativestudies.
With a meta-ethnographic methodology, our synthesis could proceed from a reciprocaltranslation of reasons for CAM use to a higher-order interpretation in the same waythat a primary study might move from a descriptive analysis to an explanatoryanalysis [50–53]. Meta-ethnography such as in our study can also be used for understandingand enriching the discourse on humanistic issues [15, 54–56].
Other published meta-ethnographic studies differ in their methodology with regard tothe steps we described above. In this project, we tried to stay as close as possibleto the methods suggested by Noblit and Hare ; however, our procedure may add ideas and material for furtherclarifications in the development of the meta-ethnographic synthesis procedure.
As is common in qualitative research projects, a key question appeared as to when andhow data saturation was achieved. We discovered that after translating two-thirds ofthe studies, no new themes could be found; we even went so far as to extend thissynthesis to the excluded studies to provide the most robust analysis possible, withthe same result. Previously published reviews of specific and individual-preferencesin healthcare and patients’ reasons for turning to CAM report results that aresomewhat comparable to those of our second-order constructs of our meta-ethnographicstudy [6–8]. Reasons for patients’ decision to use CAM include the ability toobtain emotional support, holistic care and information from their chosen provider,as well as their perception that CAM permits patients to establish a goodtherapeutic relationship and cope more effectively with their medical condition(s) . Other reasons include patients’ beliefs that CAM provides morepersonal control and a greater promise of hope than conventional therapies ; previous research has also found that patients appreciate what theyperceive as the ease-of-access of alternatives, respect for the psycho-emotionalaspects of their treatment and increased consultation time associated with CAMtherapies .
Comparing our results of the third sequence of the meta-ethnography, theinterpretation of concepts of “individualised medicine”with the ideas ofresearch and academic medicine, politics as well as economics, we found that theydiffer from the current concept of the genetically and biologically oriented form of“personalised or individualised medicine”. Presently, there exists nocommonly accepted definition of this form of “individualised medicine”;the lowest common denominator is actually the “division of patients (groups)by biomarkers” . This contrasts considerably with the richness of humanistic issuesassociated with the concepts of “individualised medicine” concepts thatwe identified in patients reasons for seeking CAM. One dissenting aspect is theconcept of “personal growth”, an effectiveness dimension which describespatients hope to be empowered by the healthcare encounter in individualisedmedicine. 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 lifehistory can include growth in spirituality, body awareness and appreciation ofnature and surroundings. In this dimension, patients request an individualised formof medicine that takes into consideration their wish for “personalgrowth”, including emotional disease handling. Successfully adapting to anillness or to reassess their biography in this way can enable patients toparticipate in social activities and feel healthy despite their physical limitations . Meditation or mindfully presence in a given situation, and,consequently, the provision of such practices, can help in the search for meaning inlife .
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] thepatient tell their story” and “digesting emotions to [patients’]illness and life situations” helped patients to identify how suffering mightfit into their individual psychosocial contexts. In particular, there was a need tohelp patients understand how suffering might fit into family dynamics and howassociated psychosocial conditions might be ameliorated . Medical and therapeutic practitioners could thus be asked to supportpatients in their endeavour to lead a meaningful life in spite of their disease andmight be urged to bear in mind that patients need therapeutic and social support todiscover their resources in the personal, biographical or spiritual environment toundertake a development of inner or “personal growth” .
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 “personalgrowth” concept. Moreover, in the biomedical model, diverse symptoms ofdiseases such as FMS are often addressed separately from their interconnectednessand linkages to the patient’s individualised bio-psychosocial factors . Likewise, our concept of “personal growth” is stronglyinterrelated with that of “holism”, which the patients in ourmeta-synthesis associated with “individualised medicine”. For thepatients it is important not to regard health problems in isolation; rather, theyshould be considered in conjunction . A holistic or integrative view requires that psychological and physicaltreatment interdependences must work together in order to be successful . In opposition to the concept of “holism”, the treatmentbased on individual biomarker-based stratification and genome-based information doesnot reflect the patients’ need to connect the disease with bio-psychosocialfactors.
Also of note is that from our meta-ethnographic study it is apparent that patientslike to assume responsibility for their care and that they have a wish for“personal autonomy”, which may come about via “educationalempowerment” and/or “active control”. This is also manifested inpatients’ desire for knowledge-building in matters of their disease. The wishof patients for “self-activation” is also related to triggeringintrinsic self-healing capacities by supporting the immune system and mental healthresources, as expressed in the subtheme of “activation of self-healingpower”.
In contrast, the genome-based individualised healthcare that is becoming moreprominent in today’s traditional medical fields connects patients’ ownactivity more with extrinsic factors by avoiding genetic or metabolic risks. In thepatients’ view of individualized medicine with regard to“self–activation”, CAM was perceived by patients as allowing for“individual responsibility for health” . Also, according to Kienle et al. (2011), patients seek CAM therapieswith the aim to support and stimulate auto-protective and (auto-)salutogenicpotentials, mostly with the active cooperation of the patient or of his/her body . Healthcare providers must consider patients’ own experience andown body knowledge as important information. The salutogenic potential as“enabling the patient to swim” stands for the mobilisation of individualresources for more autonomy [42, 62], which can be comparably expressed as the dimension of “personalautonomy” in our meta-ethnography results. The determination of individualdisease risks as one goal of genome-based individualised medicine with itspreliminary fixing to a possible disease does not consider the mobilisation ofindividual biological, psychosocial and spiritual resources.
Interestingly, as reflected in our study, a portion of what is normally called theplacebo effect may be attributed to the “activation of self-healingpower,”—a fact often neglected and not considered in the concept ofdisease risk determination. Another dimension of “personal autonomy,”namely, “educational empowerment” is a reason for the appeal ofcomplementary medicine . Lay people suffer from the circumstance that detailed technologicaladvances in medicine have prohibited them from acquiring knowledge about theirmedical diagnosis . Researchers potentially investigate and collect results ofindividuals’ biomarker-based stratification and genome-based health-relatedcharacteristics only. The knowledge and actions required for maintaining health maybe controlled by persons other than individual patients who, in contrast, want to beempowered for their own health , as expressed in patients’ stated desire for “activation ofself-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 forindividualised care and as motivation to visit CAM providers. Thus, it should beensured that “speaking medicine” (i.e., doctor-patient interaction),which includes the time a physician needs for detailed information and guidance issufficiently covered by insurers and other medical health-payment systems.
Other studies show also that a patient-centred communication style of COM physiciansis rated as “very important” by patients  and the provision of sufficient information and shared decision-makingoptions are top patient priorities . Another example, this one of personalised health care for patients withspinal cord injury, demonstrated that when a closer relationship with staff wasformed, the healthcare professionals became an essential support factor; this studyalso found that providing patients with explicit information of patients about theircondition and prognosis was necessary for their accepting the realities of theirinjury .
Consultations that last longer are perceived as being associated with apatient-centred communication style, or as a “doctor’s interest in youas a person” [48, 65, 66], enabling patients to realise “educational empowerment” asexpressed through the concept of “self–activation”. In the view ofgenome-based individualised medicine, it could be debated whether the idea of acommercially available determination of risk factors through genetic diagnosticmeasurements empowers the individuals to seek more knowledge about their owngenomes, in turn enabling them to encourage their doctors to also consider thisinformation. The effective use of such diagnostic tools could empower patients towork with their healthcare providers to determine the most suitable prevention ortreatment plan .
Furthermore, the findings from our meta-ethnographic study show that patientsperceive medicine as highly individualised and personalised when they are able toconnect 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 thesubtheme of establishing a “healing relationship”. “Healingrelationship” stands also for shared decision making in treatment agendasintegrating COM and CAM. The process of shared decision making is currently the mostdiscussed way to take into account individual preferences. However it must be noted,that complementary treatment options are still neglected in the development ofdecision aids , although patients prefer to integrate CAM into their “tailoredcare” to manage their individual medical conditions . Again, in this context the link between “individualisedmedicine” and “integrative care” can be detected . One of the greatest skills of a doctor is individualisation, includingsubtle changes to therapy and how this therapy is delivered by a skilled healthcareprovider. This influences the subjective patient’s response. A therapist whotailors his treatment will have better patients’ outcomes because she or hecan more effectively embrace the meaning of the therapeutic response . Over and above that, “integrative care”, including both CAMand conventional therapies for chronic diseases, could have the potential to improvea costly and fragmented delivery system .
On the other hand “tailored care” can coincide with gene-based riskinformation 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 withpatients’ perspective of “tailored care”. However, there is a needfor comprehensible information on the results of such measurements and the meaningof the diagnosis; patients need physicians to provide a medical explanation for laypeople. With educational support, patients even prefer to calculate and interpretevent rates and the number needed to treat or to harm . We argue that gene-based risk information must therefore be accompaniedby the concept of “educational empowerment”. A central dimension of“educational empowerment” is the provision of evidence based patientinformation which enables patients to judge and to decide according to their ownpreferences [71, 72].
The final third-order concept of individualised medicine “wellbeing” asdiscussed in our study is often mentioned in the included literature as the desirefor both psychological and physical “wellbeing”. Patients expressed astrong desire for individualised care provided in a familiar environment. When suchcare was not available, patients found it difficult to meet even basic physicalneeds . A more familiar and less clinically medicalised environment is thusreflected as individualised care . Patients seek CAM therapies as comparatively harmless ways to supportthe body’s healing capabilities [70, 74]. The patients in our synthesised studies also sought support for thesometimes 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 differentialinterventions offers effective treatment and the reduction of side effects as wellas unique therapeutic items (e.g., prostheses, implants adapted as a trulyindividual), those enable patients to continue engaging in normal activities in asense of “wellbeing”. Moreover, regarding the desire for fewer sideeffects, patients’ expectations merge with the goals of genome-basedindividualised medicine in the search for an exact diagnosis and targeted treatment.It could be debated that the introduction of pharmacogenomic concepts into thepractice of herbal medicine could be effective in reducing incidences ofCAM-associated therapy failures. Furthermore, the phenomenon of psychosocialgenomics, which explores the sophisticated relationship between gene expression,neurogenesis and healing practices, has the potential to reconcile biomedicine withvarious healing experiences brought about CAM .
In summary, the patients described in the included qualitative studies have ahumanistic concept of “individualised” medicine thatentails much more than individualised specifications on the molecular level, such asis the case in genome-based “personalised medicine”. Similar to theabove-discussed patients’ concepts of “individualised medicine”,the German Bundestag’s report on the future of individualised medicinereflects our finding that the patients may have other preferences (e.g., emotionaldimension, handling of the disease) than the genome-based concepts . In addition, a clear distinction has been defined, namely that“individual medicine does not have any contribution for disease handling andthe particular psychological burden which the probabilistic-predictive informationof the individual medicine implies” . With this statement, the report’s authors referred to the needthat “individualised medicine” should be embedded in the context of“speaking medicine” (i.e., doctors-patient interaction) andpsycho-social support .
Furthermore, in May 2012, a number of German experts discussed at the annual meetingof the German Ethics Council the expansion/addition of biologically targeted“individualised medicine” to psychological, social, biographical andspiritual aspects. In a joint effort of such medical research and care, the patientwould benefit from - rather than being a victim - of progress .
All of the studies included in our meta-ethnographic study investigated patientswho used CAM as a complement to COM. We also included studies with focus groupsinterviewing non-CAM users being asked about their perception of CAM. Thepatients of the identified studies were mostly COM users in the beginning oftheir disease who turned to CAM for the reasons discussed above. Therefore, theinvestigated patient samples seem to be well balanced and can be interpreted asrepresenting the “usual” patient population, as far as this ispossible in such a qualitative approach. However, it must be emphasized thatpatients who turn to CAM modalities are more likely to seek out a healthylifestyle or preventive measures than non-CAM users .
We must also consider that some of the concepts discussed in this study mayoverestimate patients’ individual perspectives as compared to the wholepatient population. However, as the general trend towards more complementary andintegrative health care is increasingly acknowledged as an expression of what isfelt to be missing in COM, healthcare providers and decision makers should takethese needs seriously as they seek to develop a modern concept of individualisedmedicine compatible with patients’ needs.
Based on the results of our meta-ethnographic study, it can be stated that thereexists a difference between the concept of individualisation from the patientperspective and the present notion of “personalised or individualisedmedicine” on the basis of genetics and biology. Patients’ coreexpectations for individualised care are a respect for “personalgrowth”, a “holistic” focus, adoctor-patient-“alliance”, “self-activation”,“integrative care” and “wellbeing”. There is a congruence ofpatients’ expectations with the goals of genome-based individualised medicinein the search for a reduction of side effects and functional ability, which would inturn enable patients to continue engaging in normal activities. In addition,detailed diagnostic measurements and consequently suited treatments, as well asadjusted medication doses correlated closely with patients’ perspective of“tailored care”. Furthermore, patients’ knowledge of genomic riskfactors could be reflected their concept of “educationalempowerment”.
At present, alternative other patient ideas related to individualised medicine arerarely reflected in genome-based individualisation concepts. At the individual levelof patient perceptions, the concepts of individualised and integrated medicinemerge. For these reasons, a comprehensive concept of “individualised andintegrative health care” could be formed to include both the genome-basedperspective of individualised medicine and the more holistic perspective ofindividualisation frequently expressed by patients. Such a comprehensive approach tomedicine 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”; thisapproach could be characterized by a doctor-patient “alliance” in thesense of “time” and the “healing relationship” and thefreedom of “integrative care” and “wellbeing” through fewerside effects and increased functional ability. When allocating funds for researchand health budgets, patients’ notions with regard to individual treatmentshould play an important role in the pursuit of a high-quality healthcaresystem.
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The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6882/13/124/prepub
We are grateful to the contribution of the quality research colloquium of thechair of Medical Theory, Integrative and Anthroposophic Medicine at UniversityWitten/Herdecke for providing helpful advice and comments on the qualityappraisal of the included studies.
The authors declare that they have no competing interests.
All authors contributed to the development of the manuscript. All authors read andapproved the final manuscript.
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