The concept of personalized medicine has become synonymous with risk factor identification and treatment. But according to a German study, our understanding of the term is in fact more in line with personal development, integrative care, authenticity, self-determination and wellbeing. Values which we look for in complementary, alternative and integrative care.
In research, medicine, politics and economics, the concepts personalized or individualized medicine have come to be interpreted in a particular way, which seems to interfere with how patients themselves understand these words.
Dominant Discourses Rule
This interference is a common feature of a dominant discourse. A dominant discourse tends to ”rule”, i.e. to silence or marginalize competing discourses. By discourse, I am referring to an omnipresent feature of language and ideology.
A discourse is a way of viewing and discussing something, which simultaneously defines and delimits that very thing. In this case a very important thing, namely what we as patients understand by health care which is appropriate to our own, personal needs.
This is an issue about which we have written previously.
Biomarker Risk Identification
Individualised medicine has come to primarily signify the genetic or other biomarker identification of high-risk individuals, and the treatments adapted to these individual risk profiles.
In the case of drugs, we have learned to adjust treatment to genetically determined differences in metabolism, within the field of pharmacogenetics. In itself a hugely important area, to which we will return shortly.
This way of defining these terms has become all-pervasive; it has become synonymous with the phenomenon itself.
Authenticity in Care
Brigitte Franzel and her collaborators at Center of Integrative Medicine, University of Witten-/Herdeckeuniversitetet, Germany were concerned with this state of affairs.
Earlier studies had shown that patients want authentic, person-centered care and personal patient-doctor communication. To a significant (though not exclusive) extent, these are the very qualities that studies report them as saying they are looking for in complementary, alternative and integrative care.
But what do patients themselves understand by the terms personalized or individualized medicine/care? The researchers wanted to gain a deeper understanding of how patients conceptualized these core values.
Searching 67 databases, they compiled key concepts in patient narratives and analyzed the interrelationships between the concepts.
Significant Differences
Among over 9500 citations, 30 publications met the inclusion criteria for the study. These were interpreted by a multidisciplinary team of researchers. The conclusion of this so called meta-ethnographic analysis was that there were significant differences between patient conceptions of personalized or individualized medicine and the common understandings of these terms within medicine, economics and politics.
Patient conceptions turned out to be much more related to personal development, holism, integrative care, self-determination and wellbeing. These results must be taken into account in designing and interpreting research projects and in the allocation of health care resources, writes the German group.
Avoiding Risks
However, the situation is not a simple either-or. Indeed, as patients we also want to know our biological risk profiles and exercise empowerment by avoiding risks and taking care of ourselves.
In this particular case, the medical concept of tailor-made care (as a sub-component of individualized care) dovetails nicely with patients own understanding of the concept.
However, the authors find that supplementary, understandable information about the significance of such risk assessments and diagnoses in lay terms is often missingin this context. Patients need to be educationally empowered.
In Sweden, many of these issues have been discussed in depth in the books and articles of medical anthropologist Lisbeth Sachs, of which some works are available in English.
Strong Link in Sweden
The link between the concept of personalized or individualized medicine and genetics is probably particularly strong in our own country and for good reason. Sweden is home to a Professor Emeritus Folke Sjöqvist, erstwhile Head of the Department of Clinical Pharmacology at Karolinska University Hospital Huddinge, Karolinska Institutet. Sjöqvist is a leading global authority in clinical pharmacology and a pioneer in the field of pharmacogenetics.
As early as 1967, he and Wolfgang Hammer published the first study showing that patients receiving the same dose of a the antidepressant drug nortriptyline ended up with vastly different amounts of the drug in the bloodstream. Plasma concentrations differed by a factor of 30-40.
Huge Medical Significance
Of course, the medical significance of this discovery was huge and it spawned the field of therapetic drug monitoring (TDM). The upshot was that – given such huge differences in drug metabolism – if all patients received the same doses of drugs, some would end up with harmful or even fatal overdoses, while others presumably would not benefit sufficiently or at all.
Furthermore, some substances might interact unfavourably, as we have previously reported for grapefruit (in Swedish).
Metabolism Genetically Determined
Behind these variations lie group differences in drug metabolism, more precisely hos the drugs are metabolised by genetically determined ”families” of enzymes in the liver/gut wall (all belonging to the super-family of cytochrome P450-enzymes or CYP for short).
The research field exploded, and patients could in time be divided according to how rapidly their enzyme systems metabolized drugs. Today, as part of TDM, plasma drug concentrations are routinely monitored as a basis for individualized drug dispensing. At the Department of Clinical Pharmacology, Karolinska University Hospital alone, over 60 000 tests of around 100 drug substances are done annually.
Supplementary Patient Perspective
According to the study by Franzel and colleagues, there are hence good reasons to supplement the pharmacogenetic perspective with research on how patients view individualized care.
David Finer
Franzel et al. Individualised medicine from the perspectives of patients using complementary therapies: a meta-ethnography approach.BMC Complementary and Alternative Medicine 2013, 13:124.
Lisbeth Sachs, Adam Taube and Carol Tishelman. Risk in numbers – Difficulties in the transformation of genetic knowledge from research to people – The case of hereditary cancer, Acta Oncologica, 2001, (40), 4, 445-453.
Lisbeth Sachs., Problems of communication in evidence-based medicine, International Journal of Risk and Safety in Medicine, 2001, (14), 3-4, 107-114.
Lisbeth Sachs, From a lived body to a medicalized body, Medical Anthropology, 2001, (19), 4, 299-317.
Tags: attitude, authenticity, biomarker, Brigitte Franzel, CAM, communication, complementary and alternative medicine, conceptions, cytochrome P450, David Finer, discourse, ethnography, grapefruit, health care, individualized medicine, integrative medicine, meaning, narrative, patient, patient-doctor communication, person-centered, personalized medicine, research
