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The Need for Humanomics in the Era of Genomics and the Challenge of Chronic Disease ManagementThe Need for Humanomics in the Genomics Era FREE TO VIEW

J. Mark FitzGerald, MD; Iraj Poureslami, PhD
Author and Funding Information

From the Institute for Heart and Lung Health, The Lung Centre, Vancouver General Hospital and The University of British Columbia.

CORRESPONDENCE TO: J. Mark FitzGerald, MD, Institute for Heart and Lung Health, The Lung Centre, Vancouver General Hospital, 2775 Laurel St, Vancouver, BC, V5Z 1M9, Canada; e-mail: mark.fitzgerald@vch.ca


FINANCIAL/NONFINANCIAL DISCLOSURES: The authors have reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2014;146(1):10-12. doi:10.1378/chest.13-2817
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We are in the midst of a revolution in human biology, with our understanding of the evolution of transition from health to disease being decoded daily. Proteomics to genomics beckon as harbingers of a nirvana-like state where our maladies will be analyzed to such a degree that prognosis and treatment options will be available on an individualized level. As newer diagnostic and imaging technologies emerge, the art of history taking and clinical examination risks becoming redundant. Despite the undoubted promise of the new technologies, fundamental behavioral issues will still need to be addressed. It is unlikely that we will discover a gene that identifies those more at risk for nonadherence or that provides a marker for the presence of a low level of health literacy. Likewise, as transglobal migration creates multicultural and ethnic communities, behavioral and cultural issues will also require a different lens in creating models of care, especially those affected by the emerging global burden of chronic disease. This perspective argues the hypothesis that despite the promise of new technology, there will remain a need for an acknowledgment of behavioral perspective best described as a humanomics perspective.

The management of chronic disease, long considered a challenge in established economies, now is recognized as an equally important health issue for emerging economies. In this context, its societal burden already exceeds that of infectious diseases, including TB, malaria, and HIV infection. Technologic success may help with personalized medicine, but considering the recipient of our care truly in a personalized manner goes far beyond a sequence of genetic coding.

For many current diseases we have successful treatments available, but they either are not prescribed appropriately or, when prescribed, are taken at a minimal level. In a large administrative database study, we showed that only about 40% of patients with moderate to severe asthma took their asthma medications on a regular basis.1 Nonadherence is a standard feature across all diseases but especially chronic diseases.

As providers of health care, we constantly assume our dialogue with our patients, which is typically jargon rich, is still somehow understood by them. In contrast with this naive viewpoint, we know that even in developed economies, low levels of health literacy and numeracy are widespread. Such reduced levels of health literacy are associated with worse health outcomes. Health numeracy has been defined as the degree to which individuals have the capacity to access, process, interpret, communicate, and act on numerical, quantitative, graphical, biostatistical, and probabilistic health information needed to make effective health decisions.2 It has been shown that reduced numeracy skills in parents are associated with an increased risk of asthma exacerbations among their children.3 A further study has added to the literature by showing that both low levels of health literacy and numeracy are associated with worse outcomes in asthma across the range of end points.4 The findings indicate that addressing the issue of health literacy could lead to significant improvements in the health outcomes of patient populations and that the programs and interventions designed to increase health literacy levels might lead to improvements in population health and concomitant reductions in health-care system costs.

Closely allied with health literacy, viewing disease management through the cultural and ethnic perspective of the recipient of our care is critical. There are many cultural taboos associated with delivery of health care, which increase the challenges of disease management. In addition, the challenge of reduced health literacy is amplified when the educational materials developed are not only pitched at too high an educational level but also with the added challenge of being delivered in the patient’s second language. Accessing health information and care is more than the availability of information and services alone. It is arbitrated by education level, cultural beliefs and practices, and language proficiency of the message receiver, as well as communication skills of care providers, nature of information materials and messages, and the settings in which health information is provided.4,5 Patients who have difficulty understanding physician instructions and health information may experience difficulties accessing care, receive lower quality care, or underuse health services. This problem is especially meaningful when it comes to the management of chronic diseases. Recognizing this behavioral gap is essential if we are to maximize the benefits of the new and much-vaunted technologies of personalized medicine. Techniques to improve adherence have been reviewed, but the potential for further refinements likely remains. The use of cell phone-based technology has been shown to improve adherence to antiretroviral therapy in sub-Saharan Africa and also to improve smoking cessation rates.6 A patient-centered asthma management approach has shown that adherence and health outcomes can be significantly improved.5

Equally important, proper communication with patients belonging to ethnic minorities is a key to successful self-management practice and health outcomes. Language access through medical interpreters or bilingual care providers has been identified as the most basic and frequently cited aspect of culturally appropriate health care. However, the simple and direct translation from English to another language is usually not enough to make health information culturally appropriate to non-English-speaking patient populations. When members of patient populations and their immediate caregivers at home have direct involvement in the development of information materials, educational interventions, and measurement tools, those materials and tools are perceived as more culturally relevant and more meaningful to patients with low levels of health literacy. We have shown that involving community members as well as patients in the development and delivery of educational materials in the patients’ language and that applied patients’ cultural beliefs and practices significantly improved asthma knowledge and proper use of inhalers among Punjabi-, Cantonese-, and Mandarin-speaking patients with asthma.5

A patient’s ability to comprehend a physician’s instructions and potential for improved adherence to their treatment regimens are shaped by cultural factors that extend beyond education level, language proficiency, or socioeconomic status. Important work remains to research the links among culture, low-health literacy, and systemic barriers, especially as they affect elderly patient populations from low-income minorities and immigrants to developed countries.

It should also be noted that in the era of personalized medicine, the fundamental new genomic knowledge will need interpretation and explanation. It is already recognized that the ethical issues around such discussions will be complex, not least in terms of a rational explanation of the risk-benefit ratio. The complexity of these discussions will be amplified unless the behavioral framework, to take account of the issues raised in this perspective, are dealt with. In summary, as we embrace the exciting opportunities that the genomics era brings, we should be mindful of the equally important framework of humanomics and how both will need to be integrated into the management of patients as we move forward.

References

Sadatsafavi M, Lynd L, Marra C, Bedouch P, Fitzgerald M. Comparative outcomes of leukotriene receptor antagonists and long-acting β-agonists as add-on therapy in asthmatic patients: a population-based study. J Allergy Clin Immunol. 2013;132(1):63-69. [CrossRef] [PubMed]
 
Golbeck AL, Ahlers-Schmidt CR, Paschal AM, Dismuke SE. A definition and operational framework for health numeracy. Am J Prev Med. 2005;29(4):375-376. [CrossRef] [PubMed]
 
Rosas-Salazar C, Ramratnam SK, Brehm JM, et al. Parental numeracy and asthma exacerbations in Puerto Rican children. Chest. 2013;144(1):92-98. [CrossRef] [PubMed]
 
Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97-107. [CrossRef] [PubMed]
 
Poureslami I, Nimmon L, Doyle-Waters M, et al. Effectiveness of educational interventions on asthma self-management in Punjabi and Chinese asthma patients: A randomized controlled trial. J Asthma. 2012;49(5):542-551. [CrossRef] [PubMed]
 
Lester RT, Ritvo P, Mills EJ, et al. Effects of a mobile phone short message service on antiretroviral treatment adherence in Kenya (WelTel Kenya1): a randomised trial. Lancet. 2010;376(9755):1838-1845. [CrossRef] [PubMed]
 

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References

Sadatsafavi M, Lynd L, Marra C, Bedouch P, Fitzgerald M. Comparative outcomes of leukotriene receptor antagonists and long-acting β-agonists as add-on therapy in asthmatic patients: a population-based study. J Allergy Clin Immunol. 2013;132(1):63-69. [CrossRef] [PubMed]
 
Golbeck AL, Ahlers-Schmidt CR, Paschal AM, Dismuke SE. A definition and operational framework for health numeracy. Am J Prev Med. 2005;29(4):375-376. [CrossRef] [PubMed]
 
Rosas-Salazar C, Ramratnam SK, Brehm JM, et al. Parental numeracy and asthma exacerbations in Puerto Rican children. Chest. 2013;144(1):92-98. [CrossRef] [PubMed]
 
Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97-107. [CrossRef] [PubMed]
 
Poureslami I, Nimmon L, Doyle-Waters M, et al. Effectiveness of educational interventions on asthma self-management in Punjabi and Chinese asthma patients: A randomized controlled trial. J Asthma. 2012;49(5):542-551. [CrossRef] [PubMed]
 
Lester RT, Ritvo P, Mills EJ, et al. Effects of a mobile phone short message service on antiretroviral treatment adherence in Kenya (WelTel Kenya1): a randomised trial. Lancet. 2010;376(9755):1838-1845. [CrossRef] [PubMed]
 
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