It’s in the Genes: How to Help Patients Build Family Medical Histories

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By Megan M. Krischke, contributor 

August 1, 2013 - Tracing one’s family tree has become a popular pastime, but what about tracing a family’s medical history?  Every patient is asked to do it--ideally reporting on three generations’ worth of health data--yet a large percentage of patient records contain inaccuracies and missing information. New tools and techniques are trying to change that, in order to help health care providers do a better job of helping their patients.

Why family histories are important 

Increasingly, medical researchers, health care providers and health care consumers are recognizing the importance of collecting an accurate family medical history.  This information can help patients take proactive steps in preventing diseases and help providers in detecting and diagnosing illnesses.  

As an example, a recent study published in the Annals of Oncology reported that immediate family members of survivors of certain types of cancer were at increased risk of being diagnosed with not only the same kind of cancer, but also with related cancers. Among their findings, researchers saw a 3.4-fold increased chance of prostate cancer among men with a close relative who suffered from bladder cancer. 

Nurses are often the providers working with patients to gather and discuss family medical histories, and therefore play an important role in ensuring the accuracy of these histories. 

Rosemary Ventura: Patients are more comfortable managing their medical history online.
Rosemary Ventura, RN, MA, director of nursing informatics at NewYork-Presbyterian Hospital, says patients are getting more comfortable managing their information, such as medical histories, online.

“It is important for nurses to establish a sense of security and relationship with the patient and to help them understand that getting a family medical history is important so that they can receive the best possible care,” recommended Rosemary Ventura, RN, MA, director of nursing informatics at NewYork-Presbyterian Hospital (NYP) in New York City. “When patients believe that we are advocating for them, they feel more free to speak.”

“These medical histories can help us to understand other aspects of our patients’ lives--perhaps they are caring for a loved one who is ill and that is adding stress to their lives.”

What nurses can do to help “fill in the blanks” 

Mary Hughes, RN, PA-C, PA/NP, manager of outpatient clinical services for the department of cardiovascular medicine at the Cleveland Clinic urges nurses to not just skip a question if the patient doesn’t know the answer. 

“We have so many things we have to do when we see a patient. We try to go through things quickly, but if a patient doesn’t know, for instance, if there is a history of hypertension in their family, the nurse should encourage the patient to take a copy of their history home and make some calls to get the answers they need,“ she said. 

It can also be helpful to send patients their family history worksheets before their appointment, when possible.

“Sometimes people will have their history written down in a journal and forget to bring it to the appointment,” said Ventura. “I encourage patients to ask for copies of their medical records--it is their record and they have every right to it.”

It is also wise to have patients review their medical history at subsequent appointments. 

“There are certain diseases like heart disease, lung cancer and high blood pressure that especially run in families. Asking specifically about the presence of those diseases can help trigger someone’s memory,” explained Hughes. “Though less common, there are also hereditary links to mental illnesses, such as schizophrenia, as well as to diabetes and some types of arthritis.”

Norma Gomez: Kidney disease is impacted by other conditions, so family medical histories are important.
Norma J. Gomez, MSN, MBA, RN, CNN, president of the American Nephrology Nurses' Association, notes that kidney disease is impacted by other conditions like diabetes, cardiac disease, and hypertension, so it is important to know if these run in the family.

“For chronic kidney disease, it is important to know relatives' histories, especially anyone who has had diabetes or hypertension in the family. These are two of the leading causes of CKD,” added Norma J. Gomez, MSN, MBA, RN, CNN, president of the American Nephrology Nurses' Association. “Most health care institutions have some type of nursing assessment tool. The nurse should be diligent about using the tool optimally to collect an accurate and complete family history.”

“At NYP we have a few tools we leverage for the nursing staff to manage patient histories,” remarked Ventura. “The EMR is creating a medical record that is longitudinal rather than just for a moment in time. Nurses can see if a patient has been to our hospital before and what was documented on previous visits.”

New online tools for patients 

“One of our most exciting tools, however, is our patient portal at myNYP.org,” Ventura continued. “Once patients sign up for an account they can access their medical records and update their information at their convenience.”

In addition to health systems’ patient portals, there are a growing number of online tools and mobile applications that are available to all health care consumers at little or no charge.  

The U.S. Surgeon General provides My Family Health Portrait, which allows the user to enter and update health information, as well as to easily print it to share with family members or health care providers.  The Genetic Alliance also provides an online service that helps users to create a booklet that not only tracks medical history, but also helps users to start health care conversations with their family.

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