Creating My Family’s Health Portrait or History

1. Creating My Family’s Health Portrait or History Susan K. Morris, AFC Extension Educator, Family & Consumer Sciences Montgomery County

2. Did you know… • In 2004, the U.S. Surgeon General announced that Thanksgiving Day would also be recognized as the first annual “National Family History Day”? • The U.S. Surgeon General and the Department of Health & Human Services launched a national campaign called U.S. Surgeon General’s Family History Initiative that year? • In 2005, the U.S. Surgeon General launched a free, easy-to-use Web-based tool, My Family Health Portrait, for our use – in English and in Spanish? • You may build a drawing of your family tree and chart of your family health history on this free website? • That you may watch Family History: A Window on Your Health by visiting the National Human Genome Research Institute website at: http://www.genome.gov/17516481?

3. Why did the U.S. Surgeon General and HHS take these actions? They felt that by tracing the illnesses suffered by your parents, grandparents and other blood relatives, you could help your doctor predict the disorders to which you may be at risk, and help you take action to keep you and your family healthy.

4. What is a Family Medical History? • Your family medical history (or medical family tree or pedigree or portrait) is a record of illnesses and medical conditions affecting your family members. • It is a visual representation of the relationships among members of your family. • It includes information for each person about diseases, age of disease onset, causes of death and other relevant health information.

5. Why Is It Important? With your family’s medical history, you could… • Work with your health care professionals to individualize your care • Prevent and screen for conditions for which you may be at a higher risk • Educate your family members • Save time by having medical information at your fingertips • Save your life!

6. How is it used? • Assess risk of certain diseases • Recommend changes in diet or other lifestyle habits • Recommend treatments that can modify disease risk • Determine diagnostic tests to order • Identify other family members who are at risk • Determine type and frequency of appropriate disease screening tests • Determine whether you or a family member should get a specific genetic test • Identify a condition not otherwise considered by your doctor • Assess your risk of passing conditions on to your children

7. What Information Is Needed? • Ask relatives about any health conditions they have had. • Chronic illnesses such as heart disease or diabetes • Pregnancy complications • Developmental disabilities • If possible, list formal names of conditions – be specific. • Specific medical conditions • List of medicines taken • Get help finding information about living and deceased relatives (e.g., relatives, health care professionals) • Is there cancer or a rare condition in the family? • Are you planning to have children?

8. Genetic Screening Questionnaires The American Medical Association provides downloadable genetic screening questionnaires that may be useful for physician/health care providers (http://www.ama-assn.org): • Prenatal Genetic Screening Questionnaire - may be downloaded, completed and presented to the physician prior to or during a pregnancy • Pediatric Clinical Genetics Questionnaire – may be useful in helping the health care professional gather information, forming a diagnosis and treatment plan • Adult Family History Form – often used to rule out a condition that may have developed later in life, which may or may not have been inherited

9. Talk with Your Family • Most Important – • Parents • Brothers and Sisters • Your Children • Also Important – • Grandparents • Uncles and Aunts • Nieces and Nephews • Half-Brothers and Half-Sisters • Also Helpful – • Cousins • Great Uncles and Great Aunts

10. Be sensitive… There are reasons why a person may be reluctant to discuss medical issues so be sensitive to… • Feelings of shame • Painful memories • Denial about history of disease in family • Cultural of generational differences • Lack of understanding of medical conditions • Perception that a family medical history has no value

11. Discussion Strategies • Explain your purpose • Know the facts • Approach the approachable • Choose the environment • Provide several ways to answer questions

12. Discussion Strategies • Word questions carefully • Be a good listener • Respecting privacy • Ask permission • Other ideas??

13. Consider other sources of information • Existing family trees • Baby books • Old letters • Obituaries or records from places of worship • Public records – county record offices • Birth certificates • Marriage licenses • Death certificates • If adopted, ask adoptive parents if they received any medical information about your biological parents at adoption • Adoption agencies

14. What information should be included? Try to gather as much accurate information as possible from at least three generations. For each person, gather: • Sex, Date of birth, Race, Ethnicity • For deceased relatives, age at time of death and cause of death • Diseases or other medical conditions • Age of disease onset • Diet, exercise habits, smoking habits or history of weight problems • Occurrence of diseases and medical conditions often associated with genetic risk, such as cancer, heart disease, diabetes, asthma, arthritis, mental illness, high blood pressure, high cholesterol, stroke, kidney disease, alcoholism or other substance abuse, birth defects, vision or hearing loss, learning disabilities, mental retardation, miscarriages or stillbirths

15. Tips about My Family Health Portrait • If you use the Internet-based tool, the data you enter will be assembled into a “pedigree” family tree that you may download. • The information is private – the Internet-based tool does NOT store your information. • You may choose to save download and save your family health history on your home computer. • It should take about 15 to 20 minutes to build a basic family health history. Larger families may take more time. • The tool is easy to use but help is available from the Application Support Desk (1-888-478-4423). • You may print and share the family health history with other family members, if you wish. They may provide additional information you didn’t know.

16. Complete “My Family Health Portrait” • Complete form online at: https://familyhistory.hhs.gov/ OR • Write each relative’s name in the designated box and circle whether male or female • On the lines under the boxes, write the names of any health conditions your relatives have had. • Once you’ve completed this form, take it to your health care professional(s) • Make a copy for your records. • Update the form as circumstances change or as you learn more about your family’s health history.

17. https://familyhistory.hhs.gov

18. What should I do with the completed family medical history? • Provide a copy to your doctor and review it with him/her • Answer questions posed by your doctor • Take any preventative measures suggested by your doctor • Schedule any screening tests suggested by your doctor • Share a copy with key family members • Store a copy in a safe place such as a home safe or safe deposit box • Update your family medical history every 2-3 years • Provide revised copy to your doctor & family members

19. Family Health and Medical Record • To remember details about your family’s health, a system of record keeping is helpful. • Many individuals and families use more than one doctor. • Families without a health record may face problems when they move or when children enter new schools. • A family health record will come in handy when completing applications for jobs, school, and insurance. • A family health record may help you get faster and more accurate health and medical care. • It will help a new doctor develop health histories for your family members. • Your Family Health and Medical Record booklet – free download: http://fcs.tamu.edu/health/child_health/family_medical_record/

20. Advance Directives • Name Health Care Agent • Name Durable Power of Attorney for Health Care • Provide Health Care Instructions, such as… • Life Support • Efforts to revive a stopped heart or breathing • Feeding through tubes inserted into the body • Medicine for pain relief • Download the Maryland “Advance Directive Information Sheet” and/or the “Advance Directive Form and Instructions” from – http://www.oag.state.md.us/Healthpol/AdvanceDirectives.htm • Or call (410) 576-7000 to request a printed copy • Or write to Attorney General’s Office, Health Decisions Policy Division, 200 St. Paul Place, Baltimore, MD 21202

21. Security precautions • Take reasonable precautions if you choose to send your family health history to relatives. • Encrypt the information before sending it via email. • If you don’t have access to encrypted email, it may be better to transfer the information on a CD or memory stick – either in person or by regular mail • Deliver printed copy in person or by mail

22. Thank you for your kind attention. Susan K. Morris, AFC Extension Educator, Family & Consumer Sciences Montgomery County