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Jan 15, 2009 (Vol. 29, No. 2)

Keeping the “Person” in Mind in Personalized Medicine

Highest-Quality Healthcare and Best Patient Service Go Hand-in-Hand

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    At the very time that the concept of personalized genomic medicine is taking hold in multiple sectors of the biomedical and biotechnology community, as well as in the popular press, the impersonal nature of our healthcare system has never been clearer.

    An individual’s response to an illness triggers the most primal instincts of survival, often heightens a sense of self, and clarifies interpersonal relationships. In contrast, the technological aspects of modern medicine are often viewed as antithetical to the humanistic elements. A patient shuttling between specialists, hospitals, and an increasingly long and confusing battery of tests is unlikely to be reassured that he or she is receiving the best in personalized care.

    In fact, there are often debates among scientists, clinicians, and educators about the extent to which medical care needs to be balanced between biomedical advances and the need for more humanistic and nurturing patient care. A full concept of personalized medicine has the opportunity to embrace both sides of this discussion, and focus it squarely on the patient. In this context, personalized medicine will develop on a vast foundation of modern medical care, moving forward when innovations improve the current approaches. 

    Thus, as we, the medical community, talk about building informatics platforms to bring together the rapidly accumulating wealth of genomic, molecular, and clinical data to devise personalized regimens for an individual’s wellness as well as illness; as we talk about reforming health economics to ensure the continuing development and delivery of new generations of diagnostics and therapies; and as we talk about new modes of collaborative basic research and new ways to devise clinical trials to capture rather than ignore variation, we must not lose sight of the need to devise equally valuable ways of delivering this future of personalized medicine to the people it is designed to help.

    In addition to biomedicine, we must pay attention to the culture of compassion and healing that is at the heart of medicine. To that end, we need to consider the environment in which we offer medical care, integrating a wide array of heterogeneous services into a seamless patient-centric environment.

    We also need to revive and revise the doctor-patient relationship in the context of personalized medicine. The foundation of medical care has always been a personal relationship with a physician or healthcare provider. We must reinforce that relationship, as the focus of what will be an increasingly large network of professionals (both clinical and research) linked to any individual’s healthcare. 

    Of course, we will need to educate physicians and other healthcare providers to fulfill their roles. This means not only educating them on the complexities of molecular and genomic medicine, but also preparing them to negotiate the information that patients will arm themselves with.

    Unlike most of medical history, in which the doctor stood at the pinnacle of medical knowledge, patients no longer get most of their information from their physician. Instead, patients are seeking out a variety of sources—some good, some not so good—to educate themselves about their health. Physicians and healthcare providers must be prepared to participate in this dialogue, providing support for patients to handle this enhanced individual responsibility for their healthcare.

    We must ensure, not only patient support in this environment, but also safety and privacy. All segments of society will be challenged by the ethical and regulatory issues raised by personalized medicine. These include privacy in the age of individual genomes, nondiscrimination for insurance and employment, the responsibilities of individuals and healthcare providers faced with genomic information, and legal principles associated with all of these issues. 

    Personalized medicine naturally integrates research and patient care in a way that offers unparalleled opportunities for new synergies. But, this places an additional onus on the healthcare provider to ensure that the best interests of the patient, and not, for instance, a research trial, are preserved.

    Patients and their families are, of course, first and foremost interested in the restoration of health. But, they are also interested in service (the ease of navigating their healthcare needs) and the quality of the services they receive. While science and technology create unprecedented healthcare opportunities, patients will expect medical centers to continually enhance service and be transparent with patients on the quality of care and outcomes.

    We see the genomic revolution as an opportunity to reinvent  medicine as a truly integrated framework of clinicians, researchers, educators and administrators whose goals are aligned to focus directly on the patient. As we redefine medicine, both from a scientific and economic standpoint, we have an opportunity and a responsibility to integrate scientific and humanistic care focused on individual patients.  

    To realize its full potential, personalized medicine must be viewed as a combination of the highest-quality healthcare and the best patient service and individual care based on the unique biology of the patient.   


Readers' Comments

Posted 01/18/2009 by Founder, DataSpeaks, Inc.

We can help achieve many of these fine objectives now with a computational algorithm, enbodied as software, that can be used to measure the apparent benefit/harm of treatments over time and across health variables for individual patients. This software can enable new RCT designs that capture individual variability by assessing causality before any group comparisons and before any statistical analyses of data from two or more patients. Accordingly, new scientific gold standards for clinical research would be integrated with new scientific gold standards for the clinical care of individual patients. This computational measurement technology and the RCT designs that it enables can be applied when drugs are developed and used to manage or control chronic health problems.

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