This article on family history and patient health comes from PCNA President, Eileen Handberg, PhD, ANP-BC, FACC.

There is a direct link between an accurate and complete family history and patient health. Having a thorough patient background can lead healthcare providers to earlier diagnosis and treatment of cardiovascular and other diseases, reducing rates of heart attack and stroke, and improving quality of life.

How can clinicians help bridge the gap between what is in a patient’s family health history, and what details have been recorded in their medical record, to facilitate better decision-making? How can we help patients better understand the link between their family history and their health? How can we ensure that we have all the available information in our clinical settings?

Making the Link Between Family History and Patient Health

Often, a patient is first faced with the task of completing a comprehensive family history checklist (including key elements such as personal or family history of diabetes, heart attack, stroke, or other issues) when they arrive at a provider’s office, or they arrive at a hospital or urgent care center with a potentially serious worry. At the time, they may not know or recall that Grandma Marge had diabetes, that Uncle Raul died at the age of 51 from a heart attack, and that Mom had some condition that required her to get her blood drawn every few months when the patient was a child. Many families are blended, and adoption is common, so understanding the biological relationships in a family is also important to help patients complete their health history in the most appropriate way.

These key details, however, can mean the difference between life and death, particularly for genetic conditions such as hypercholesterolemia, amyloidosis, pulmonary hypertension, and many other cardiovascular diseases.

There are some key things to take into account so that the most complete medical record can be completed:

1. Recognize the Impacts of Health Literacy and Other Barriers

We often see patients when they are not feeling their best. They may be anxious, frustrated, in pain, and irritated. And they also may have, for a variety of reasons, difficulty in reading and understanding not only what we are saying, but in the information that we are sharing and asking them to complete.

Recognize that medical jargon (even terms that we use frequently) may not be familiar to our patients. Using common ‘living room’ language wherever possible—even on patient and family history forms—can help. Having team members who can answer patient questions without making the patient feel ill at ease is also a help.

There also may be language barriers. We may not have written forms and information in their native language, making it difficult for the patient and their family to accurately understand and complete the information. Or a family member, caregiver, or friend may be translating the written information for the patient and may not explain the terms correctly, potentially leading to errors in completing the family history or other forms.

For language barriers, access to written materials in various languages, and translators familiar with medical terminology can be of help.

2. Emphasize the Importance of a Complete and Accurate Record

As healthcare professionals, we understand the importance of data and information in what we do each day. It is important to recognize, however, how daunting (and maybe embarrassing, depending upon what is being asked and answered) for patients to share these details.

A family health history is not a one-and-done activity, and being mindful of the frustration that the forms can cause is important. Patients are asked for these details at almost every type of clinical visit—in your office, at the dentist, when they go for vision exams, as well as multiple other healthcare settings (particularly if they are seeing healthcare providers that are out-of-network on their insurance). It can be daunting for patients and their families to complete these checklists, and to be required to do so on multiple occasions can add to the annoyance and lead to incomplete or inaccurate completion.

Helping patients understand their importance, and how the information will be used in your setting, may help. And describing that the information may be of help to their families for genetic conditions such as hypercholesterolemia, amyloidosis, pulmonary hypertension, and many other cardiovascular diseases

3. Allow Time for Data Gathering Before a Visit

For routine care, one strategy for acquiring an accurate and thorough patient and family history is to send the checklist to the patient well in advance of the clinical visit. Patients may be prompted by a letter, email, or note in their patient portal to complete the checklist in advance. This allows time for patients to dig through old records, ask family members who may be the keepers of family history information, or even look back at a similar checklist they completed for a previous provider.

4.  Encourage Record-keeping by Patients and Families

Saving details in an easy-to-find, easy-to-update, and easy-to-potentially-share location can benefit the patient as well as their relatives, and keep them from having to repeat the onerous task of remembering everything each time.

Patients could keep a copy of their completed records. Handwritten information or data kept on an electronic document or spreadsheet are also beneficial. The CDC website offers some useful examples that might be offered to your patients and families.

5. Make Sure Records Reflect the Most Up-to-date Information

While there often is limited time in the clinical setting to interact with patients, making sure personnel elicit information about any changes in the medical history aids the entire team in disease diagnosis, treatment, and management. If there are questions that the patient cannot answer on the initial family history checklist, gently asking at future visits can potentially help fill in the blanks. “Have you learned anything new about the health of anyone in your family since your last visit?” is one example of an open-ended question that may help. As things are updated, dating the record will also be helpful as medications and medical history changes can happen quite often if the patient is experiencing a complex health issue.

Clinical Takeaways for Family History and Patient Health

1. Share with patients the importance of accurate family history information.
   • More accurate and earlier diagnoses can lead to longer, healthier lives
2. Understand that patients may not have access to family history information for various reasons, and be sensitive when asking about gaps
   • Make sure that you provide opportunities for patients to provide as accurate a family history as possible.
   • Allow time before the clinic visit, and if possible follow up with clarifying questions during the visit.
   • Task patients with finding additional information, if possible, and follow up at subsequent visits with questions about any changes in family health.

Clinical Resources for Family History and Patient Health

• The Centers for Disease Control and Prevention has a patient-facing website on the importance of family history information and links to potential tools that can be used.
• American Medical Association family history tools for providers.
• National Institute on Aging info on health histories from older adults.