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• W2170579408 abstract "Capsule Summary•Recent studies have documented the ability of patients to provide accurate and insightful data on the impact of skin disease.•The information and communication revolution provides us with innovative approaches and novel tools to accomplish such a goal, including the concept of “crowdsourcing.”•Increased input from patients has the potential to change the nature of the research questions we ask and the approaches we take in treating those affected by skin diseases.Slightly more than 6 years ago, the Society for Investigative Dermatology (SID) and the American Academy of Dermatology (AAD) partnered to publish a report describing the impact of skin disease. We jointly funded this study–which used administrative databases to estimate the direct annual financial cost of skin disease in the United States–ultimately published as “The Burden of Skin Diseases” in the Journal of the American Academy of Dermatology in 2006.1Bickers D. Lim H. Margolis D. Weinstock M. Goodman C. Faulkner E. et al.The burden of skin diseases: 2004.J Am Acad Dermatol. 2006; 55: 490-500Abstract Full Text Full Text PDF PubMed Scopus (585) Google Scholar The work was important for a number of reasons, one of which was ushering in a period of more effective partnerships between these two key organizations. •Recent studies have documented the ability of patients to provide accurate and insightful data on the impact of skin disease.•The information and communication revolution provides us with innovative approaches and novel tools to accomplish such a goal, including the concept of “crowdsourcing.”•Increased input from patients has the potential to change the nature of the research questions we ask and the approaches we take in treating those affected by skin diseases. Over the ensuing years the SID and the AAD have explored new and exciting ways to partner in selective activities that advance the missions that we share. As a next step to build upon the original Burden Project, the AAD and the SID hosted a follow-up event, the Comorbidity Project, in the fall of 2008.2Schultz H. Society for Investigative Dermatology skin disease comorbidities project launch conference proceedings.J Invest Dermatol. 2009; 129: 525-528Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar We brought together multiple stakeholders to discuss and identify priorities and gaps in research and clinical care. This stand-alone meeting was followed up with additional conjoint meetings at the SID Annual Meetings in 2009 and 2010. The theme of the 2010 meeting reflected the philosophy of the Journal of Investigative Dermatology Editor, Paul Bergstresser, who designated 2010 as the “Year of the Patient” emphasizing a common core mission of both the AAD and the SID to prevent and treat skin disease and to improve the quality of life of patients affected by skin disorders. The goal of the meeting was to construct a framework that could be used as a basis for efforts to increase our basic understanding of skin disease, better appreciate the impact of such conditions on affected patients, and further our collective ability to improve the knowledge base and tools that will be required to improve the care and alleviate the discomfort of those affected by skin disease. Furthermore the conference featured a panel discussion addressing the powerful challenge to increase the congruencies of the 3 key communities: patients, clinicians, and researchers (Fig 1). We asked the basic question: Can the goals of the patient, researcher, and clinician communities be better aligned? The “language” of disease is often expressed differently when spoken by researchers, clinicians, and patients. Scientists use descriptive terms, numbers, stages, and visualization techniques. Each author who publishes research findings seeks to have their work impact the research of others and to be cited by others, a measure of impact in their realm. Patients speak in more intimate terms: feelings, loss of function, and impaired quality of life. The first priorities of those affected by skin disease are advances that directly and measurably impact these elements. Clinicians focus on what they can see and readily measure, and addressing these elements tend to be their priorities. Although all parties are looking to directly impact the lives and experiences of those with skin diseases, there are significant barriers to aligning the priorities of clinicians and scientists with patient priorities and translating their activities into a positive effect on patient care. A major barrier to this transformation is the limits of current tools for communication, information collection, and data analysis. Discussion of the treatment of patients invariably includes the term “outcomes” referring to the analysis of measurable (and hopefully clinically relevant and important) end points. Disease impact may be viewed as high stakes, which are generally marked by low-frequency high-impact events or lower stakes, which are marked by a higher frequency of modest to low-impact events. Although selected skin diseases involve high stakes, the overwhelming number of skin diseases result in lower stakes but high-frequency burdens. Although skin disorders may only rarely result in loss of life, they often make people uncomfortable, both physically and emotionally, and substantially impact their daily function. How do we assess this type of impact? What specifically do we measure and where, how, and how often do we measure it? These are not trivial questions and the fact that our attempts to define and measure skin disease comorbidities outside the realm of life and death have met with limited success clearly suggests this is an area where much work needs to be done. Patient input is essential to developing sharper outcome measures because quality of life is only partially captured with existing scientific methods and measures.3Garratt A. Patient-reported outcome measures in trials.BMJ. 2009; 338: a2597Crossref PubMed Scopus (36) Google Scholar, 4Garratt A. Schmidt L. Mackintosh A. Fitzpatrick R. Quality of life measurement: bibliographic study of patient-assessed health outcome measures.BMJ. 2002; 324: 1417-1422Crossref PubMed Google Scholar Historically, researchers mine data collected from a variety of sources.5Lash W. Mor V. Wieland D. Ferruci L. Satariano W. Silliman R. Methodology, design, and analytic techniques to address measurement of comorbid disease.J Gerontol A Biol Sci Med Sci. 2007; 62a: 281-285Crossref Scopus (87) Google Scholar We as clinicians and researchers see patients and their disease episodically. However, patients with chronic skin disease are faced with a continuum of disease present all day, every day of their life. Although skin disease may not put them in life-or-death scenarios, it puts their lives, as they would want them, at risk. Ideally, information relating to day-to-day impact of disease upon patients could be collected as part of ongoing clinical care. The information systems required to collect the data needed to identify and quantify disease impacts most important to affected patients are not robust. Volume and time pressures associated with episodic patient care models create additional barriers. New methods are needed to accurately assess disease impact and patient quality of life particularly between clinical visits. Despite these barriers, there are compelling reasons for all constituencies to pursue innovative approaches to collect and analyze information relevant to the impact of skin disease on patients. Clinicians are increasingly called upon to demonstrate that their care results in less time lost at work, decreasing medical care cost through carefully considered efficient workup and treatment decisions, and improved patient-reported outcomes. Patients will be the most obvious beneficiaries of studies that identify and characterize the impact of skin disorders. This brings us back to data and the research community. What better place to invest resources than in an area where there are important questions to answer that have direct impact upon patients with significant disease. Paul Bergstresser, the current editor of the Journal of Investigative Dermatology wrote, “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.” Patients are perhaps our best advocates for the importance of clinical care and research relating to skin disease. It is an almost universal observation of those who attend the joint AAD/SID Skin Disease Research Day that the most effective advocates are the representatives of the Coalition of Skin Diseases. However, it could be argued that our partnerships with patients have not gone nearly far enough if they focus exclusively on political advocacy and research funding and development. There is empiric evidence that enhanced patient engagement may serve to enhance patient-oriented research endeavors.6Corser W. Sikorskii A. Olomu A. Stommel M. Proden C. Holmes-Rovner M. Concordance between comorbidity data from patient self-report interviews and medical record documentation.BMC Health Serv Res. 2008; 8: 85Crossref PubMed Scopus (76) Google Scholar For instance, studies of new medications in clinical trials have relied on physician reporting of adverse events. Although this approach is reasonably effective in identifying high stakes events, it is now appreciated that placing a physician filter in the data collection mechanism results in missing substantial drug-induced adverse events. Allowing patients to directly report such events generates a much more realistic picture of drug adverse events, particularly when symptoms are the predominant presenting feature.7Basch E. Jia X. Heller G. Barz A. Sit L. Fruscione M. et al.Adverse symptom reporting by patients versus clinicians: relationships with clinical outcomes.J Natl Cancer Inst. 2009; 101: 1624-1632Crossref PubMed Scopus (434) Google Scholar, 8Basch E. The missing voice of patients in drug-safety reporting.N Engl J Med. 2010; 362: 865-869Crossref PubMed Scopus (451) Google Scholar The onset of the 21st century has been marked by an information revolution, facilitated by new communication tools and the Internet. Much as the printing press changed how the printed word and information was controlled, these new information tools are likely to bring about even more fundamental changes, particularly on the practice of medicine and the relationship of patients with their health care providers. Like all innovations these changes represent both threats and opportunities. The threats are primarily in the form of changes in how we have historically done business. Change will occur and the pace of change will likely upset many of those happy with the status quo. The opportunities revolve around how researchers, clinicians, and patients collect and use information. The vast array of World Wide Web–based information tools may facilitate the engagement of patients in both care and research. These include patient social networking sites. There is a concept called “crowdsourcing,” a term coined by Jeff Howe9Howe J. The rise of crowdsourcing. Wired Magazine. 2006. Available from: URL:http://www.wired.com/wired/archive/14.06/crowds_pr.html. Accessed November 10, 2010.Google Scholar in Wired magazine, where tasks are outsourced to a large group of people (or crowd) through an open call. The potential benefits of such an approach include:1.Problems can be quickly explored at comparatively little cost.2.Payment is by results or even omitted.3.You can tap a wider range of talent than might be present in your organization.4.Organizations can gain firsthand insight on their customers’ desires. Can we use such tools and crowdsourcing to engage patients in partnerships with clinicians and researchers? We can view our present circumstances like a green field where the options for what and where to build are wide open. From a research perspective, patients can be a source of critical data that, if captured, can serve as the basis for an almost unlimited number of clinically relevant studies. From a clinician standpoint, tapping into such sources of patient-derived data may focus our care to areas not previously considered important. The possibilities are endless. The AAD and the SID share some core missions. A strengthened partnership has been constructed in the past several years. It is our hope that we will continue to find exciting ways to expand our knowledge through clinically relevant research and positively affect the health of patients affected by skin diseases!" @default.
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• W2170579408 title "Burden, bench, and bedside: Patient-centered care requires patient-centered research" @default.
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