{"paper_id":"1b880d40-2509-4d22-a46d-0f5d8be813eb","body_text":"Rather than referring to “individualised medicine” focusing on\nindividualised care tailored to patient needs, the concept of “personalised\nmedicine” in today’s age of genetic research denotes the molecular\nbiologic specification of individuals [ 1 ]. Current statements on personalised or individualised medicine appear\nmainly in the context of research and academic medicine, politics and economics. In\nrecent years, individualised medicine has become a major research challenge, as\nclinicians and researchers have sought to discover more specific and individually\ntailored diagnostic tools and treatments for managing cancer, diabetes, and other\ncommon medical conditions [ 2 ]. Complementing this increase in genetic and molecular biological\nknowledge a clear trend has arisen towards genome-based individualised medicine;\nsuch genomics-associated discoveries have opened up vast options for health care\nsystems with regard to patient management. The German Bundestag’s recent\nreport on the future of “individualised medicine in the healthcare\nsystem” sought to assess the current state of health-related science and\ntechnology and the possible developments and implication associated with\nindividualised medicine for medical care, health insurance and companies [ 2 , 3 ]. Therein five concepts of individualisation were presented: (1)\nindividual biomarker-based stratification, (2) genome-based individual\nhealth-related characteristics, (3) genetic biomarkers, (4) individual disease risks\nand (5) differential intervention offerings and unique therapeutic items. As a\nfurther delineation, but also as an assignment by definition, “speaking\nmedicine” (i.e. doctor-patient interaction) was attributed to the holistic\nmedical approaches of the Complementary and Alternative medicine (CAM) [ 3 ].\nHowever, the question has so far remained unanswered as to whether the current focus\nof research and academic medicine, politics and economics on molecular biologic\nspecification can ameliorate the healthcare needs of patients in a balanced relation\nto the invested resources [ 4 , 5 ]. Furthermore, although the aims of innovations in healthcare systems\ninclude improved quality of life and other patient-specific goals, healthcare\nproviders often neglect sufficiently to discuss with patients realistic expectations\nregarding such aims. A research gap has been identified in “that the real\ntarget audience for individualised medicine so far has hardly been questioned about\ntheir preferences” [ 3 ].\nPatients’ concerns about this lack of individualised attention and open\ndialogue have been borne out in a number of reviews suggesting that patients often\nturn to Complementary and Alternative medicine (CAM) because they feel that the\ntraditional healthcare system does not provide adequate patient-centred care or\nindividualised physician-patient interactions, or because they are seeking more\nholistic or integrative forms of care [ 6 - 8 ]. The published reviews about reasons for CAM use analyse quantitative\nstudies; at present there is no meta-synthesis of qualitative studies available.\nQualitative studies are applied when methods are needed to understand patients’\nsubjective experiences and perceptions of healthcare [ 9 - 11 ]. As the nature of clinical knowledge based on quantitative research\nmethods and statistical analysis can be somewhat limited when individual or\nsubjective phenomena, contexts of illness or health, or patients specific individual\nneeds are to be investigated, qualitative methods provide a more thorough approach\nfor describing personal human behaviour and needs; this is also true for the study\nof CAM [ 12 , 13 ].\nSince primary qualitative studies sometimes reveal that concepts of person-centred\ncare are part of the common expectation of patients seeking CAM practitioners [ 14 ], it is reasonable to expect that the accumulated knowledge provided by\nqualitative studies can provide an in-depth understanding as to the concepts, ideas,\nperceptions, views and expectations of individualised medicine patients have who\nturn to CAM. For this reason, we decided to explore patients’ views about\nindividualised care by analysing their reasons for seeking CAM and subsequently\nextract, synthesise and interpret corresponding content from primary qualitative\ninvestigations in a meta-ethnographic study.\nThe goal of the project was to describe the concepts, expectations and perceptions of\nindividualised medicine inherent in patients’ reasons for using CAM, as\ndocumented in qualitative studies. To our knowledge, ours is the first publication\nto address this important research.\n\nFor 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\npatients’ reasons for CAM use and to synthesise and interpret patients’\nconcepts of individualised medicine. A meta-ethnography, a form\n“pooling” findings of qualitative research, is a meta-analysis with a\ncomparative textual analysis of published qualitative field studies [ 15 ]. There remains controversy as to which meta-synthesis method can be best\nused for diverse sorts of qualitative research projects such as the one described\nhere. In this case, from various methods of meta-synthesis, we determined the\nmeta-ethnography with its interpretive orientation, to be the best approach. Because\npatients’ concepts, expectations or perceptions of individualised medicine\nwere not readily available in primary studies at the time the research question was\nraised, we collected and analysed in a meta-ethnography patients’ previously\nexplored reasons for CAM use, and subsequently interpreted patients’ concepts\nof individualised medicine. The research project included three major sequences (1)\na systematic literature search of 67 electronic databases and the subsequent\nappraisal of selected publications of qualitative studies investigating\npatients’ reasons for seeking CAM therapies, with inclusion eligibility\ndetermined using defined criteria (2) a conduction of a meta-ethnographic study\nfollowing Noblit and Hare’s [ 15 ] method to translate the key concepts of why patients use CAM; and (3) a\nline-of-argument approach for the synthesis and interpretation of patients’\nconcepts of individualised medicine.\nFollowing Noblit and Hare, our meta-ethnographic method included seven phases that\noverlapped and were repeated as the synthesis proceeded (Table  1 ).\n\nIn the first sequence of the research project a total of 9,578 relevant articles were\nfound, of which 3,615 were screened on the basis of abstracts and titles.\nSixty-three full publications were analysed according to the predefined inclusion\nand exclusion criteria (Table  1 ). Of these 63 papers, a\ntotal of 25 publications were excluded after full text analysis and 38 publications\nwere appraised with a quality assessment checklist. An additional eight publications\nwere excluded following the quality assessment performed by two members of the\nresearch team working independently Further details about the literature search\nresults are listed in the Additional file  2 . The remaining\n30 studies that we synthesised in our meta-ethnography originated mostly in the\nUnited States, the United Kingdom or Australia. The majority of these 30 studies\nconsisted of studies of cancer patients or of patients with chronic diseases.\nCharacteristics of the studies included in the meta-ethnography are presented in\nTable  2 . Of the 30 studies, 27 studies reported\nresults of patients using various CAM modalities. Two of the studies we examined\nreported the use of meditation and prayer, and one study reported the use of\nbody-based therapies (e.g., massage therapy). Most studies used a qualitative\ndescriptive design and collected data using semi-structured interviews. Study themes\nwere determined to be roughly similar, which Noblit and Hare expressed as\n“reciprocal” [ 15 ].\nThe reciprocal translation of reasons for CAM use, representing the second sequence\nof the research project, resulted in the following secondary-order themes:\n“time”, “holism”, “tailored care”,\n“teamwork and equal relationship”, “new avenues”,\n“facilitating transformative effect”, “support for self-healing\npower”, “gentle and natural treatment”, “less side\neffects”, “autonomy and active control”, “dimensions of\nwellbeing” and “accessibility and legitimization”. The translated\nsecondary-order themes were the base for the line-of argument synthesis and the\ninterpretation of patients’ concepts of individualised medicine.\nThe third sequence of the research project was a “line of argument”\nsynthesis and a higher-order interpretation from the reciprocal translation.\nThe six third-order concepts interpreted from the data are shown in Figure  1 . The synthesis indicates that patients’ value\nindividualised medicine in terms of a humanistic approach, expressing the wish for\nan opportunity for “personal growth”, a “holistic” form of\ncare, ease of “self-activation” and “integrative care”, a\ntherapist- patient-“alliance” in the sense of establishing a healing\nrelationship and “wellbeing”. These concepts were not exclusive, and\nthey overlapped in certain dimensions and sub-themes. The third-order concepts with\nthe respective dimensions and sub-themes resulting from the “lines-of-argument\nsynthesis” are presented below, with representative quotes from the original\npapers shown in Table  3 .\nPatients’ concepts of “personal growth” stood for a personal\ntransformation process that was expected to be induced or facilitated by the\nhealthcare encounter and that encompassed a reassessment of disease and life\nhistories, an identification of causes, an understanding of the disease, a\nre-evaluation of attitudes and priorities and a way to find a fitting philosophy\nof health and life. It also comprised an exploration and implementation of\nlifestyle changes, including elements such as increased body awareness and\nspirituality and an appreciation of nature and surroundings. This concept could\nbe further subdivided into the four dimensions described below.\nPatients’ motivation to seek individualised care and to visit CAM\npractitioners in the event of a serious or life-threatening illness included\nthe need to find time, space, opportunity and support to interpret and\naccept the illness emotionally. Here, the emotional and existential\nconsternation caused by disease requires a thorough reassessment of\none’s personal situation [ 16 - 28 ].\nSerious illness often led to questions related to the meaning of life and\ndisease. In their attempt to cope with such questions, people might seek\nperson-centred care to receive assistance. Some patients understood their\nillness to be a teacher, which could lead to an effort to integrate their\ndisease into the biographical context of their personality [ 16 , 17 , 23 , 26 , 29 , 30 ].\nThe establishment of a correlation between physical symptoms and\npsychological, biographical and existential aspects was often understood by\npatients to be a\nMeta-ethnography steps according to Noblit and Hare [ 15 ]\nrefreshing exercise and could be perceived as person-centred care when the\ntherapist provides the time and support for such discussion during the\npatient’s visit [ 16 , 17 , 19 - 24 , 26 , 29 ].\nThe dimension of “transformation” reflected the possibility of\npersonal development and a transformation of life; here, spiritual aspects\nseem to have become more relevant to patients reporting this dimension [ 18 , 27 , 30 , 31 ]. Patients appreciated an individualised approach in which they\nexperienced support in inner development and which could have redefined\ntheir position from recipient (of treatment) to that of an explorer as their\ndisease progressed [ 16 , 17 , 19 - 28 ]. With person-centred care patients felt empowered to develop new\ndirections for improving their lives and lifestyle [ 17 , 26 , 28 , 30 ].\nThe most common theme among all 30 studies was that of “holism”. An\nindividual approach was identified by CAM patients with a whole-person approach\nor a holistic approach. Instead of singular accounts for biomedical factors and\nisolated symptoms, patients reported that healthcare providers should take into\nconsideration a wider range of factors or causes based on patients’\nopinions; these concerns included a variety of physical, psychological,\nspiritual, social and economic factors. Most patients acknowledged a wide\nconcept of care, which opens up a greater number of dimensions than pure\npharmacological treatment alone. This concept could be further subdivided into\nthe two dimensions described below.\nHolism reflects a comprehensive account of various levels of treatment. An\nindividualised therapeutic approach could include various interactions with\ndifferent medical specialties (e.g., surgeon, radiologist, general\npractitioner, psychologist, physiotherapist) and patient lifestyle aspects\nsuch as nutrition and exercise therapy [ 16 - 18 , 21 , 24 , 29 , 32 - 37 ].\nPatients acknowledged the importance of respect of their whole person’s\nstate, specifically referring to their desire for “an individual\napproach to be seen as a whole person” [ 19 ] rather than as composites of various biomedical attributes or\nisolated symptoms. Likewise, patients expected their therapists or\nphysicians to approach them with a broad holistic world-view that integrated\ntheir physical, psychological, spiritual, social and economic dimensions of\nlife.\nHere, the concept of individualised medicine merges with integrative care.\n“Integrative care” refers to the patients’ need for choosing\namongst different treatments options, including treatment alternatives offered\nby conventional medicine (COM) or combinations with CAM modalities. Patients had\nthe desire for unique treatments that suited them personally, specifically\nthrough the option of selecting from a wide variety of modalities. Patients also\nwished to be explorers of their own health, capable of deciding for themselves\namong various CAM and COM modalities.\nIn the majority of cases, patients sought conventional treatment of their disease\nand appreciated the advances of modern medicine. However, they also wanted to\nhave room for integrating into their care different models or healthcare\noptions. This type of personal problem-solving or coping strategy using both\ncomplementary and conventional methods highlighted patients’ willingness\nto seek out individualised opportunities. Over and above that, integrative care\nreflected patients’ desire for better access to CAM therapies. This\nconcept also represented patients’ desire to discuss CAM use openly with\nCOM providers without being dismissed or not taken seriously. The\n“integrative care” concept could be further subdivided into the\ndimensions described below.\nPatients wanted their individual life and disease situation respected with a\nperson-centred treatment approach which suited their specific personal needs\nin diagnosis, risk information and treatment. They appreciated\nproviders’ attempts to match appropriate practices and treatments to\ntheir unique problems, values, preferences and life circumstances, including\nconventional and complementary methods [ 18 , 26 , 28 , 30 , 32 , 33 ].\nPatients perceived the establishment of a treatment protocol involving CAM as\na highly individualised process [ 16 , 26 , 34 - 36 ]. However, patients also felt a responsibility to investigate for\nthemselves potential side effects of recommended medications and treatments\nand through CAM they sought out treatment options that\nMain criteria of included studies\nThird-order concepts and their relationship: a model of how\npatients perceive individualised medicine.\nincluded fewer side effects, even when this interest was not shared by COM\npractitioners [ 29 ].\nOne commonly identified expectation concerning individualised care expressed by\npatients who sought help from CAM therapists was the wish for a caring\ndoctor-patient “alliance”. This concept could be further subdivided\ninto the two dimensions described below.\nA number of papers mentioned time as an important concept related to\npatients’ perceptions of individualised care of CAM therapists.\nSpecifically, patients wanted the undivided attention of their physicians,\nindividual one-by-one time, the possibility to get additional appointments\nalso in between regular visits, time to think about different treatment\noptions seriously before making a decision and the feeling of the individual\nof being listened to [ 19 , 32 , 33 , 37 ]. Patients reported that they wished to have sufficient time for\ntelling their personal history and for discussing health issues and for\nasking questions and obtaining appropriate explanations about disease and\ntreatment options [ 17 , 19 , 20 , 22 , 27 , 32 , 33 , 37 ],[ 38 ].\nPatients 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\nproviders. The establishment of an effective doctor-patient\n“alliance” was directed towards a common goal; avoided\npaternalism and stereotypes; included an engaged and caring, empathetic and\nnon-judgemental attitude on the side of the practitioner; and allowed for\ndeeper patient understanding and empowerment [ 17 - 19 , 21 , 24 - 27 , 30 , 32 , 34 - 36 , 39 , 40 ].\nPatients’ perspective on individualised medicine and their desire for\n“self–activation” represented the empowerment of\n“personal autonomy” and the “activation of the self-healing\npower” of the patient. Here, “personal autonomy” referred to\nthe patient’s conception of himself or herself as a victim (i.e., an ill\nperson) as opposed to that of a person who has (re-)gained control over their\ntreatment and health.\nThe dimension of gaining or regaining “personal autonomy”\ndescribed patients’ wish to be enabled through an individualised\napproach of “educational empowerment” to cope with and accept\ntheir own health and medical condition; take responsibility through active\ncontrol for their own health; and become actively involved in decision\nmaking related to their condition [ 17 , 22 , 23 , 27 , 38 , 41 ].\nSeveral patients were persuaded that the activation of self-healing resources\nmight have physiological, psychological, social, spiritual and\nquality-of-life benefits. Patients wanted to support their individual\nself-healing capacities and subsequently apply CAM to the standard treatment\nthey received. This corresponds to the salutogenic idea [ 42 ] referring to approaches that support healing processes and\nwellbeing rather than fighting factors that cause disease. Correspondingly,\npatients wished for their health care providers to support, guide and coach\nthem in developing and using self-healing techniques. Patients believed that\nindividualised healthcare enforcing psychological processes which\nfacilitated hope, positive expectations and feelings, relief of anxiety and\nanticipation of improvement could influence physiological processes and\ncontribute to healing over and above pharmacologically mediated processes [ 17 , 22 , 23 , 27 , 30 , 35 , 38 , 39 ],[ 43 ].\nPatients expressed a basic need for health and appreciated the benefits of COM\noptions for ameliorating and curing disease. However, patients at times\nexperienced disappointment with COM and subsequently sought out alternative\ntreatments. In the 30 studies synthesised here, patients turned to CAM and used\nalternatives mainly as individually tailored complements to standard medical\ntreatments in a sense of “wellbeing” or quality of life. Here,\n“wellbeing” as a concept of individualised medicine reflected\npatients’ wish for a physically and psychologically healthier feeling,\nemotional clarification and the relief from chronic symptoms. This concept could\nbe further subdivided into the four dimensions described below.\nPatients’ concepts of individualised medicine\nThe dimension of maintaining physical wellbeing and functionality (i.e.,\nbeing more active and continuing to work during treatment) was of great\nimportance to patients. This dimension was related to the life limitations\nwhich an illness can cause and to patients’ hope for possible\nimprovements brought about with the support of individualised medicine [ 17 , 19 , 20 , 26 , 34 , 43 ].\nPatients sought a treatment environment in which they were able to relieve\ntheir tensions. CAM therapists were perceived as making a greater attempt\nthan COM providers to individualise care so that patients could experience a\nrelaxed, supportive environment that also attended to the purely hedonistic\naspects of patient care (e.g., relaxing environment with music); also\nimportant to this experience was the provision of therapeutic CAM-based care\nthroughout the patient encounter. Patients construed this form of\nindividualised care as not causing stress and as being enjoyable, and as\nproviding the opportunity for a “time out” from regular\nactivities [ 17 , 19 , 24 , 26 , 27 , 32 , 39 , 43 - 45 ].\nThis dimension of “wellbeing” denoted the wish of patients for\nindividualised natural treatment with fewer side effects. Furthermore,\npatients wanted an individualised approach that included CAM treatments as a\nnatural strategy to deal with harmful treatments and to relieve the side\neffects, damage and discomfort caused by conventional treatments [ 17 , 19 , 22 , 23 , 26 , 30 , 34 , 35 ],[ 39 , 41 , 43 , 44 , 46 ].\nSome individualised healthcare modalities that triggered self-regulation were\nperceived by patients as being stressful at the outset, but patients\nexpressed that they subsequently experienced a pleasing effect once they had\nsuccessfully navigated this temporarily emotional exertive situation.\n“Wellbeing” was not synonymous with pure wellness in a\nhedonistic sense only, but resulted from deeper conflict solving, in a sense\nof personalised care [ 17 , 18 , 27 , 29 ].\n\nThis meta-ethnographic study used the three-stage approach of a rigorous literature\nsearch and quality appraisal, a synthesis of qualitative research and an\ninterpretation of overarching constructs for addressing the research question as to\nwhat concepts of individualised medicine patients have who use complementary\ntherapies. Although there exist a handful of research projects with qualitative\nstudies that begin to investigate patients’ notions of personalised medicine, [ 47 - 49 ] the relative dearth of primary studies reporting on this topic required\nus to take the indirection with reasons for CAM use as documented in qualitative\nstudies.\nWith a meta-ethnographic methodology, our synthesis could proceed from a reciprocal\ntranslation of reasons for CAM use to a higher-order interpretation in the same way\nthat a primary study might move from a descriptive analysis to an explanatory\nanalysis [ 50 - 53 ]. Meta-ethnography such as in our study can also be used for understanding\nand enriching the discourse on humanistic issues [ 15 , 54 - 56 ].\nOther published meta-ethnographic studies differ in their methodology with regard to\nthe steps we described above. In this project, we tried to stay as close as possible\nto the methods suggested by Noblit and Hare [ 15 ]; however, our procedure may add ideas and material for further\nclarifications in the development of the meta-ethnographic synthesis procedure.\nAs is common in qualitative research projects, a key question appeared as to when and\nhow data saturation was achieved. We discovered that after translating two-thirds of\nthe studies, no new themes could be found; we even went so far as to extend this\nsynthesis to the excluded studies to provide the most robust analysis possible, with\nthe same result. Previously published reviews of specific and individual-preferences\nin healthcare and patients’ reasons for turning to CAM report results that are\nsomewhat comparable to those of our second-order constructs of our meta-ethnographic\nstudy [ 6 - 8 ]. Reasons for patients’ decision to use CAM include the ability to\nobtain emotional support, holistic care and information from their chosen provider,\nas well as their perception that CAM permits patients to establish a good\ntherapeutic relationship and cope more effectively with their medical condition(s) [ 7 ]. Other reasons include patients’ beliefs that CAM provides more\npersonal control and a greater promise of hope than conventional therapies [ 6 ]; previous research has also found that patients appreciate what they\nperceive as the ease-of-access of alternatives, respect for the psycho-emotional\naspects of their treatment and increased consultation time associated with CAM\ntherapies [ 8 ].\nComparing our results of the third sequence of the meta-ethnography, the\ninterpretation of concepts of “individualised medicine”with the ideas of\nresearch and academic medicine, politics as well as economics, we found that they\ndiffer from the current concept of the genetically and biologically oriented form of\n“personalised or individualised medicine”. Presently, there exists no\ncommonly accepted definition of this form of “individualised medicine”;\nthe lowest common denominator is actually the “division of patients (groups)\nby biomarkers” [ 4 ]. This contrasts considerably with the richness of humanistic issues\nassociated with the concepts of “individualised medicine” concepts that\nwe identified in patients reasons for seeking CAM. One dissenting aspect is the\nconcept of “personal growth”, an effectiveness dimension which describes\npatients hope to be empowered by the healthcare encounter in individualised\nmedicine. In contrast to the concepts of biomarkers and individual disease risks,\nthe concept of the inner growth as induced by a reassessment of disease and life\nhistory can include growth in spirituality, body awareness and appreciation of\nnature and surroundings. In this dimension, patients request an individualised form\nof medicine that takes into consideration their wish for “personal\ngrowth”, including emotional disease handling. Successfully adapting to an\nillness or to reassess their biography in this way can enable patients to\nparticipate in social activities and feel healthy despite their physical limitations [ 57 ]. Meditation or mindfully presence in a given situation, and,\nconsequently, the provision of such practices, can help in the search for meaning in\nlife [ 58 ].\nAs an example a person-centred approach in fibromyalgia syndrome (FMS) patients of\n“respectfully recognizing the patients’ personal and human needs,”\n“encouraging the patients’ self-revelation,” “let[ting] the\npatient tell their story” and “digesting emotions to [patients’]\nillness and life situations” helped patients to identify how suffering might\nfit into their individual psychosocial contexts. In particular, there was a need to\nhelp patients understand how suffering might fit into family dynamics and how\nassociated psychosocial conditions might be ameliorated [ 49 ]. Medical and therapeutic practitioners could thus be asked to support\npatients in their endeavour to lead a meaningful life in spite of their disease and\nmight be urged to bear in mind that patients need therapeutic and social support to\ndiscover their resources in the personal, biographical or spiritual environment to\nundertake a development of inner or “personal growth” [ 59 ].\nThe person-centred approach in FMS noted above coincides with to the dimensions of\n“emotional disease handling,” “biographical reassessment”\nand “transformation” of our meta-synthesis in the “personal\ngrowth” concept. Moreover, in the biomedical model, diverse symptoms of\ndiseases such as FMS are often addressed separately from their interconnectedness\nand linkages to the patient’s individualised bio-psychosocial factors [ 49 ]. Likewise, our concept of “personal growth” is strongly\ninterrelated with that of “holism”, which the patients in our\nmeta-synthesis associated with “individualised medicine”. For the\npatients it is important not to regard health problems in isolation; rather, they\nshould be considered in conjunction [ 60 ]. A holistic or integrative view requires that psychological and physical\ntreatment interdependences must work together in order to be successful [ 60 ]. In opposition to the concept of “holism”, the treatment\nbased on individual biomarker-based stratification and genome-based information does\nnot reflect the patients’ need to connect the disease with bio-psychosocial\nfactors.\nAlso of note is that from our meta-ethnographic study it is apparent that patients\nlike to assume responsibility for their care and that they have a wish for\n“personal autonomy”, which may come about via “educational\nempowerment” and/or “active control”. This is also manifested in\npatients’ desire for knowledge-building in matters of their disease. The wish\nof patients for “self-activation” is also related to triggering\nintrinsic self-healing capacities by supporting the immune system and mental health\nresources, as expressed in the subtheme of “activation of self-healing\npower”.\nIn contrast, the genome-based individualised healthcare that is becoming more\nprominent in today’s traditional medical fields connects patients’ own\nactivity more with extrinsic factors by avoiding genetic or metabolic risks. In the\npatients’ view of individualized medicine with regard to\n“self–activation”, CAM was perceived by patients as allowing for\n“individual responsibility for health” [ 61 ]. Also, according to Kienle et al. (2011), patients seek CAM therapies\nwith the aim to support and stimulate auto-protective and (auto-)salutogenic\npotentials, mostly with the active cooperation of the patient or of his/her body [ 62 ]. Healthcare providers must consider patients’ own experience and\nown body knowledge as important information. The salutogenic potential as\n“enabling the patient to swim” stands for the mobilisation of individual\nresources for more autonomy [ 42 , 62 ], which can be comparably expressed as the dimension of “personal\nautonomy” in our meta-ethnography results. The determination of individual\ndisease risks as one goal of genome-based individualised medicine with its\npreliminary fixing to a possible disease does not consider the mobilisation of\nindividual biological, psychosocial and spiritual resources.\nInterestingly, as reflected in our study, a portion of what is normally called the\nplacebo effect may be attributed to the “activation of self-healing\npower,”—a fact often neglected and not considered in the concept of\ndisease risk determination. Another dimension of “personal autonomy,”\nnamely, “educational empowerment” is a reason for the appeal of\ncomplementary medicine [ 63 ]. Lay people suffer from the circumstance that detailed technological\nadvances in medicine have prohibited them from acquiring knowledge about their\nmedical diagnosis [ 63 ]. Researchers potentially investigate and collect results of\nindividuals’ biomarker-based stratification and genome-based health-related\ncharacteristics only. The knowledge and actions required for maintaining health may\nbe controlled by persons other than individual patients who, in contrast, want to be\nempowered for their own health [ 64 ], as expressed in patients’ stated desire for “activation of\nself-healing power”.\n“Self-activation” coincides here with the third-order concept of\n“alliance”, which reflects the subthemes of “time” and\n“healing relationship” in the context of the doctor-patient-interaction.\nThese subthemes are often referred to by patients as core features for\nindividualised care and as motivation to visit CAM providers. Thus, it should be\nensured that “speaking medicine” (i.e., doctor-patient interaction),\nwhich includes the time a physician needs for detailed information and guidance is\nsufficiently covered by insurers and other medical health-payment systems.\nOther studies show also that a patient-centred communication style of COM physicians\nis rated as “very important” by patients [ 65 ] and the provision of sufficient information and shared decision-making\noptions are top patient priorities [ 66 ]. Another example, this one of personalised health care for patients with\nspinal cord injury, demonstrated that when a closer relationship with staff was\nformed, the healthcare professionals became an essential support factor; this study\nalso found that providing patients with explicit information of patients about their\ncondition and prognosis was necessary for their accepting the realities of their\ninjury [ 48 ].\nConsultations that last longer are perceived as being associated with a\npatient-centred communication style, or as a “doctor’s interest in you\nas a person” [ 48 , 65 , 66 ], enabling patients to realise “educational empowerment” as\nexpressed through the concept of “self–activation”. In the view of\ngenome-based individualised medicine, it could be debated whether the idea of a\ncommercially available determination of risk factors through genetic diagnostic\nmeasurements empowers the individuals to seek more knowledge about their own\ngenomes, in turn enabling them to encourage their doctors to also consider this\ninformation. The effective use of such diagnostic tools could empower patients to\nwork with their healthcare providers to determine the most suitable prevention or\ntreatment plan [ 67 ].\nFurthermore, the findings from our meta-ethnographic study show that patients\nperceive medicine as highly individualised and personalised when they are able to\nconnect different treatment options according to their own personal preferences;\nthis is expressed in our third-order concept of “integrative care”.\nHere, this concept is associated with the “alliance” concept and the\nsubtheme of establishing a “healing relationship”. “Healing\nrelationship” stands also for shared decision making in treatment agendas\nintegrating COM and CAM. The process of shared decision making is currently the most\ndiscussed way to take into account individual preferences. However it must be noted,\nthat complementary treatment options are still neglected in the development of\ndecision aids [ 68 ], although patients prefer to integrate CAM into their “tailored\ncare” to manage their individual medical conditions [ 69 ]. Again, in this context the link between “individualised\nmedicine” and “integrative care” can be detected [ 1 ]. One of the greatest skills of a doctor is individualisation, including\nsubtle changes to therapy and how this therapy is delivered by a skilled healthcare\nprovider. This influences the subjective patient’s response. A therapist who\ntailors his treatment will have better patients’ outcomes because she or he\ncan more effectively embrace the meaning of the therapeutic response [ 70 ]. Over and above that, “integrative care”, including both CAM\nand conventional therapies for chronic diseases, could have the potential to improve\na costly and fragmented delivery system [ 47 ].\nOn the other hand “tailored care” can coincide with gene-based risk\ninformation or tests that are customised to personal biological characteristics.\nGenome-based diagnostic measurements - and, consequently accurate diagnosis,\nspecific treatments and adjusted medication doses - correlate closely with\npatients’ perspective of “tailored care”. However, there is a need\nfor comprehensible information on the results of such measurements and the meaning\nof the diagnosis; patients need physicians to provide a medical explanation for lay\npeople. With educational support, patients even prefer to calculate and interpret\nevent rates and the number needed to treat or to harm [ 71 ]. We argue that gene-based risk information must therefore be accompanied\nby the concept of “educational empowerment”. A central dimension of\n“educational empowerment” is the provision of evidence based patient\ninformation which enables patients to judge and to decide according to their own\npreferences [ 71 , 72 ].\nThe final third-order concept of individualised medicine “wellbeing” as\ndiscussed in our study is often mentioned in the included literature as the desire\nfor both psychological and physical “wellbeing”. Patients expressed a\nstrong desire for individualised care provided in a familiar environment. When such\ncare was not available, patients found it difficult to meet even basic physical\nneeds [ 73 ]. A more familiar and less clinically medicalised environment is thus\nreflected as individualised care [ 48 ]. Patients seek CAM therapies as comparatively harmless ways to support\nthe body’s healing capabilities [ 70 , 74 ]. The patients in our synthesised studies also sought support for the\nsometimes difficult work of emotional self-regulation in the dimension of\n“wellbeing after emotional clearing”.\nThe provision of functional ability is regarded as a fundamental part of\n“physical wellbeing”. Here, the bio-molecular concepts of differential\ninterventions offers effective treatment and the reduction of side effects as well\nas unique therapeutic items (e.g., prostheses, implants adapted as a truly\nindividual), those enable patients to continue engaging in normal activities in a\nsense of “wellbeing”. Moreover, regarding the desire for fewer side\neffects, patients’ expectations merge with the goals of genome-based\nindividualised medicine in the search for an exact diagnosis and targeted treatment.\nIt could be debated that the introduction of pharmacogenomic concepts into the\npractice of herbal medicine could be effective in reducing incidences of\nCAM-associated therapy failures. Furthermore, the phenomenon of psychosocial\ngenomics, which explores the sophisticated relationship between gene expression,\nneurogenesis and healing practices, has the potential to reconcile biomedicine with\nvarious healing experiences brought about CAM [ 75 ].\nIn summary, the patients described in the included qualitative studies have a\n humanistic  concept of “individualised” medicine that\nentails much more than individualised specifications on the molecular level, such as\nis the case in genome-based “personalised medicine”. Similar to the\nabove-discussed patients’ concepts of “individualised medicine”,\nthe German Bundestag’s report on the future of individualised medicine\nreflects our finding that the patients may have other preferences (e.g., emotional\ndimension, handling of the disease) than the genome-based concepts [ 3 ]. In addition, a clear distinction has been defined, namely that\n“individual medicine does not have any contribution for disease handling and\nthe particular psychological burden which the probabilistic-predictive information\nof the individual medicine implies” [ 3 ]. With this statement, the report’s authors referred to the need\nthat “individualised medicine” should be embedded in the context of\n“speaking medicine” (i.e., doctors-patient interaction) and\npsycho-social support [ 3 ].\nFurthermore, in May 2012, a number of German experts discussed at the annual meeting\nof the German Ethics Council the expansion/addition of biologically targeted\n“individualised medicine” to psychological, social, biographical and\nspiritual aspects. In a joint effort of such medical research and care, the patient\nwould benefit from - rather than being a victim - of progress [ 76 ].\nAll of the studies included in our meta-ethnographic study investigated patients\nwho used CAM as a complement to COM. We also included studies with focus groups\ninterviewing non-CAM users being asked about their perception of CAM. The\npatients of the identified studies were mostly COM users in the beginning of\ntheir disease who turned to CAM for the reasons discussed above. Therefore, the\ninvestigated patient samples seem to be well balanced and can be interpreted as\nrepresenting the “usual” patient population, as far as this is\npossible in such a qualitative approach. However, it must be emphasized that\npatients who turn to CAM modalities are more likely to seek out a healthy\nlifestyle or preventive measures than non-CAM users [ 77 ].\nWe must also consider that some of the concepts discussed in this study may\noverestimate patients’ individual perspectives as compared to the whole\npatient population. However, as the general trend towards more complementary and\nintegrative health care is increasingly acknowledged as an expression of what is\nfelt to be missing in COM, healthcare providers and decision makers should take\nthese needs seriously as they seek to develop a modern concept of individualised\nmedicine compatible with patients’ needs.\n\nBased on the results of our meta-ethnographic study, it can be stated that there\nexists a difference between the concept of individualisation from the patient\nperspective and the present notion of “personalised or individualised\nmedicine” on the basis of genetics and biology. Patients’ core\nexpectations for individualised care are a respect for “personal\ngrowth”, a “holistic” focus, a\ndoctor-patient-“alliance”, “self-activation”,\n“integrative care” and “wellbeing”. There is a congruence of\npatients’ expectations with the goals of genome-based individualised medicine\nin the search for a reduction of side effects and functional ability, which would in\nturn enable patients to continue engaging in normal activities. In addition,\ndetailed diagnostic measurements and consequently suited treatments, as well as\nadjusted medication doses correlated closely with patients’ perspective of\n“tailored care”. Furthermore, patients’ knowledge of genomic risk\nfactors could be reflected their concept of “educational\nempowerment”.\nAt present, alternative other patient ideas related to individualised medicine are\nrarely reflected in genome-based individualisation concepts. At the individual level\nof patient perceptions, the concepts of individualised and integrated medicine\nmerge. For these reasons, a comprehensive concept of “individualised and\nintegrative health care” could be formed to include both the genome-based\nperspective of individualised medicine and the more holistic perspective of\nindividualisation frequently expressed by patients. Such a comprehensive approach to\nmedicine would provide patients the opportunity to share their commitment to\n“personal growth” with their healthcare provider, as well as a\n“holistic” view and a willingness to engage in\n“self-activation” with “educational empowerment”; this\napproach could be characterized by a doctor-patient “alliance” in the\nsense of “time” and the “healing relationship” and the\nfreedom of “integrative care” and “wellbeing” through fewer\nside effects and increased functional ability. When allocating funds for research\nand health budgets, patients’ notions with regard to individual treatment\nshould play an important role in the pursuit of a high-quality healthcare\nsystem.\n\nThe authors declare that they have no competing interests.\n\nAll authors contributed to the development of the manuscript. All authors read and\napproved the final manuscript.\n\nThe pre-publication history for this paper can be accessed here:\nhttp://www.biomedcentral.com/1472-6882/13/124/prepub\n\nPRISMA 2009 Checklist.\nClick here for file\nPRISMA 2009 Flow Diagram.\nClick here for file","source_license":"CC-BY-4.0","license_restricted":false}