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 ; 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) . Other reasons include patients’ beliefs that CAM provides more personal control and a greater promise of hope than conventional therapies ; 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 .
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” . 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 . Meditation or mindfully presence in a given situation, and, consequently, the provision of such practices, can help in the search for meaning in life .
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 . 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” .
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 . 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 . A holistic or integrative view requires that psychological and physical treatment interdependences must work together in order to be successful . 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” . 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 . 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 . Lay people suffer from the circumstance that detailed technological advances in medicine have prohibited them from acquiring knowledge about their medical diagnosis . 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 , 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  and the provision of sufficient information and shared decision-making options are top patient priorities . 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 .
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 .
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 , although patients prefer to integrate CAM into their “tailored care” to manage their individual medical conditions . Again, in this context the link between “individualised medicine” and “integrative care” can be detected . 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 . 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 .
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 . 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 . A more familiar and less clinically medicalised environment is thus reflected as individualised care . 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 .
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 . 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” . 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 .
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 .
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 .
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.