Portal de Periódicos da CAPES

It's All about Patients

2009; Elsevier BV; Volume: 130; Issue: 1 Linguagem: Inglês

10.1038/jid.2009.360

1523-1747

Paul R. Bergstresser,

Cutaneous lymphoproliferative disorders research

Most authors who publish in the Journal of Investigative Dermatology and most members of the Journal's two affiliated societies—the Society for Investigative Dermatology (SID) and the European Society for Dermatological Research (ESDR)—conduct research that impacts health. This is evident in the titles of the articles published in JID and in the abstracts and talks presented at the annual meetings of these societies. That impact may be direct, as in studies of outcome instruments for pemphigus (Rosenbach et al., 2009Rosenbach M. Murrell D.F. Bystryn J.C. et al.Reliability and convergent validity of two outcome instruments for pemphigus.J Invest Dermatol. 2009; 129: 2404-2410Abstract Full Text Full Text PDF PubMed Scopus (173) Google Scholar); indirect, as in reports about dendritic cells residing in squamous cell carcinomas (Bluth et al., 2009Bluth M.J. Zaba L.C. Moussai D. et al.Myeloid dendritic cells from human cutaneous squamous cell carcinoma are poor stimulators of T-cell proliferation.J Invest Dermatol. 2009; 129: 2451-2462Abstract Full Text Full Text PDF PubMed Scopus (62) Google Scholar); or remote, as in the impact of protein kinase C-α on keratinocyte growth arrest (Jerome-Morais et al., 2009Jerome-Morais A. Rahn H.R. Tibudan S.S. et al.Role for protein kinase C-alpha in keratinocyte growth arrest.J Invest Dermatol. 2009; 129: 2365-2375Abstract Full Text Full Text PDF PubMed Scopus (39) Google Scholar). It should not be surprising that the efforts of basic researchers may impact human health, because the mission of the major funding source for biomedical research in the United States—the National Institutes of Health (NIH)—is highly congruent with these observations: “NIH is the steward of medical and behavioral research for the Nation. Its mission is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability” (http://www.nih.gov/about/index.html#mission). Taking these assertions one step further, the target of funding, and therefore the target of biomedical research, is people with disease, more commonly known as patients. In sum, it's all about patients. But scholarly journals lack descriptions of what it is like to be a patient, to be ill at ease about one's health, to have disease. Although many investigators who contribute to the scientific literature about skin and skin disease know very much about their patients and what it is like to have a disease such as pemphigus, squamous cell carcinoma, or psoriasis, they rarely write about the impact of that disease on the lives of their patients. Although there have been exceptions to this tendency, such as the JID Symposium Proceedings issue on the burden of skin disease (March 2004), we assert that there is a gap between the impact of a disease for patients and the content of scientific reports. To begin to address this gap, we have designated 2010 “The Year of the Patient,” and we dedicate these issues of JID to patients. Our intent is to describe to the scientific world at large the burden that patients with skin disease bear. In the coming year we will describe the impact of patient advocacy organizations, such as the National Psoriasis Foundation and the Alopecia Areata Foundation, which provide considerable support, not only for the scientific enterprise but also for individuals with these diseases. Moreover, 16 advocacy organizations have combined their efforts and resources in a collective organization now known as the Coalition of Skin Diseases (http://www.coalitionofskindiseases.org); member organizations pool their efforts while at the same time providing resources to meet their own interests. We applaud their efforts. Every year the Coalition of Skin Diseases, in association with members of SID and the American Academy of Dermatology, participate in an advocacy meeting in Washington, DC. Representatives of these organizations visit the legislative offices of their congressional districts and states on Capitol Hill. They describe patients' experiences, and they advocate for the goals of the NIH. As a long-time participant, I have observed that the “staffers” are interested primarily in the Coalition advocates and voters, with the scientists a distant second. Medical scientists and practicing physicians should enter the room last. In sum, it's all about patients. Several years ago, staff of the SID and members of the Coalition created art and poetry exhibitions that were displayed at each SID Annual Meeting for four years. The works on display provided extraordinary insight into the impact of disease on the lives of patients. In 2010, work from these artists will be featured on the cover of JID. Moreover, up to six pages of editorial space will be devoted to poetic descriptions of disease written by patients. We assure our readers that the intensity and creativity displayed in these contributions will fortify your creative spirit as you pursue your research endeavors. We will remember John Updike for his contributions to the public understanding of what it is like to have psoriasis. We will encourage Commentary authors, in addition to putting the scientific impact of an article into perspective, to describe, perhaps only briefly, how the research might impact human health. In selected Editorials we will draw attention to the critical role of patients in the biomedical enterprise. Because it's all about patients. Finally, what will we not do? This year's editorial emphasis on the impact of disease on patients and the contributions of patients to research does not signal a shift in the Journal's stated scope. As before, submissions may range in scope from those with direct impact on health, including clinical research, epidemiology, and health services research, to fundamental laboratory observations about mechanisms of cellular function. We will continue to publish the best papers that are submitted, assuming that they provide scientific insight into skin and skin disease.