{"id":3579,"date":"2015-11-20T12:27:06","date_gmt":"2015-11-20T17:27:06","guid":{"rendered":"http:\/\/blogs.cdc.gov\/genomics\/?p=3579"},"modified":"2024-04-08T16:53:22","modified_gmt":"2024-04-08T20:53:22","slug":"national-family-history-day-2015-thinking-globally-and-acting-locally","status":"publish","type":"post","link":"https:\/\/blogs.cdc.gov\/genomics\/2015\/11\/20\/national-family-history-day-2015-thinking-globally-and-acting-locally\/","title":{"rendered":"National Family History Day 2015: Thinking globally and acting locally"},"content":{"rendered":"
\"Multi<\/a>
Multi Generation Family Celebrating Thanksgiving<\/figcaption><\/figure>\n

Though you probably will not find greeting cards in stores celebrating this fact, Thanksgiving has been known as National Family History Day in the U.S. since 2004.\u00a0\u00a0The Office of the U.S. Surgeon General and many federal, state and private partners have marked each year with events and announcements promoting the collection and use of family health history information for disease prevention and health promotion.\u00a0\u00a0For\u00a0 a time, I had the privilege of helping to develop and carry out some of those observances at the national level through my work at the National Human Genome Research Institute.<\/p>\n

This Thanksgiving, at a family medicine residency program in rural central Maine, we will be observing National Family History Day with a concrete, but less public, activity.\u00a0 As of November 2, we have launched a one-year pilot program funded by the Maine Cancer Foundation to facilitate more effective collection and use of family health history for hereditary cancer syndromes in our clinics.\u00a0 We have developed a program that harnesses a key piece of our patient centered medical home (PCMH) care model \u2013 the nurse wellness visit \u2013\u00a0 to help patients and providers with collection and interpretation of family health history information relevant to hereditary breast and ovarian cancer as well as Lynch syndrome.\u00a0 The nurses will assist patients\u2019 use of a structured family history tool and the information will be assessed for \u201cfamily history red flags\u201d.\u00a0 These visits are a stepping stone to access a virtual genetics clinic supported by genetics professionals physically located at another institution about 1.5 hours away from our clinics.\u00a0 The genetics team will provide the patient with counseling and testing services.\u00a0 Importantly, they will also provide a structured plan of care back to our PCMH clinics to ensure optimal long-term care of at risk individuals and family members. \u00a0Patients will be allowed to self select for participation in the program.\u00a0 It is too early to know what patient uptake of these services will be, but my practice\u2019s patient advisory council (a group of patients of the practice that meets monthly to advise the practice on various subjects pertaining to patient care) has expressed great enthusiasm for the project.<\/p>\n

Current guidelines provide impetus to programs like ours that aim to make better use of potentially valuable and relatively accessible family health history information relevant to the care of patients.\u00a0 High profile, evidence-based guidelines from groups such as the U.S. Preventive Services Task Force explicitly and implicitly make use of family health history information to guide selection of appropriate screening and preventive services for conditions including osteoporosis, hyperlipidemia, and breast cancer.\u00a0 The recently updated American Cancer Society recommendations for early breast cancer detection in asymptomatic women<\/a> includes changes in mammography recommendations that incorporate family health history into decisions about when to begin mammography in individuals with a family history suggestive of increased risk for breast cancer.\u00a0\u00a0Evident in talks at the 2015 American Society of Human Genetics meeting was a \u201cnew\u201d use of family health history information that has piqued the interest of the genetics research community.\u00a0 As it turns out, sequencing studies of individuals with putatively genetic conditions turn up a fair number of novel and possibly pathogenic variants that aren\u2019t evident in large population databases.\u00a0 Having access to carefully ascertained family health history as well as variant information on other relatives turns out to be a very useful tool for understanding the meaning of variants to the affected patient.<\/p>\n

A number of barriers have been identified to widespread collection and use of family health history in clinical care.\u00a0 Federal resources are available that can reduce some of these barriers, but recent discussions with colleagues has revealed a lack of awareness of these resources.\u00a0 One such barrier is the lack of clarity regarding federal rules governing collection and storage of identifiable health information about relatives obtained from a patient.\u00a0 The genetics community has long been ambivalent about collection, storage and transmission of data about relatives from a proband (patient) due to privacy concerns.\u00a0 This has led to a variety of less than ideal work-arounds including complex de-identified naming systems for relatives in clinical charts. \u00a0To address this issue, in 2009, the United State Office of Civil Rights posted several documents clarifying permissible collection, storage, transmission and use of family health history information (http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/faq\/family_medical_history_information\/index.html)<\/a>.\u00a0 These are very much worth reading as these documents dispel some of the existing misconceptions that clinicians and researchers have been laboring under regarding the Health Insurance Portability and Accountability Act (HIPAA) and family history including that names of relatives provided by the patient should not be included in the medical record.<\/p>\n

Another barrier is the lack of incentives to collect family health information in electronic health records.\u00a0 It is widely acknowledged that electronic health record systems are underdeveloped with regard to family history capture and interpretation, despite the importance of family health history information for optimizing health care.\u00a0 An important step in remedying this was taken in 2012, when U.S. Department of Health and Human Services included the collection and storage of structured family health history information in the Stage 2 of the Meaningful Use program [PDF 182.34 KB]<\/a> for health information technology. \u00a0This program provides a federal financial incentive through the U.S. Centers for Medicare and Medicaid Services to health care entities with an EHR that meet certain standards of quality and quantity of family history information collected in the system\u2019s EHR.<\/p>\n

Readers of this blog are asked to spread the word regarding these measures \u2013 perhaps more activities like the one at our residency may spring up as barriers to the use of family health history are removed.<\/p>\n

We at the Office of Public Health Genomics wish you and your family a happy and safe National Family Health History Day!\u00a0 We hope you enjoy your turkey on Thanksgiving as well.<\/p>\n","protected":false},"excerpt":{"rendered":"

Though you probably will not find greeting cards in stores celebrating this fact, Thanksgiving has been known as National Family History Day in the U.S. since 2004.\u00a0\u00a0The Office of the U.S. Surgeon General and many federal, state and private partners have marked each year with events and announcements promoting the collection and use of family<\/p>\n","protected":false},"author":122,"featured_media":3581,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5740,5236,31864],"tags":[31858,5726,31856],"_links":{"self":[{"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/posts\/3579"}],"collection":[{"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/users\/122"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/comments?post=3579"}],"version-history":[{"count":8,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/posts\/3579\/revisions"}],"predecessor-version":[{"id":5551,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/posts\/3579\/revisions\/5551"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/media\/3581"}],"wp:attachment":[{"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/media?parent=3579"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/categories?post=3579"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.cdc.gov\/genomics\/wp-json\/wp\/v2\/tags?post=3579"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}