People might say you have your mother’s eyes or your father’s hands or maybe that you and your sibling must be twins. But families share more than just their looks. They share their genes, environment and lifestyle, too, and these factors can help give medical professionals clues to conditions that may run in a family. Collecting a family health history can help identify higher-than-usual chances of having disorders such as heart disease, high blood pressure, certain cancers, diabetes and more.
Duke Center for Applied Genomics and Precision Medicine (CAGPM) faculty Lori Orlando, M.D., M.H.S., has been leading the development and implementation of MeTree, a patient-facing family health history-based risk assessment and clinical decision support program. MeTree was designed to overcome the major barriers to collecting and using high quality family health histories to guide clinical care.
As part of the implementation process, several feasibility studies are being conducted. Graduate students working towards their master’s degrees in the Global Health Institute are taking the lead in some of these studies.
MeTree in Sri Lanka
Second-year graduate student Ruoyu Hu spent nine weeks in Sri Lanka to collect family health histories and evaluate the feasibility of generalizing MeTree for use in developing countries.
Hu recruited medical students from the University of Ruhuna in Galle, Sri Lanka, for her study. Currently, MeTree is only offered in English, and medical students in Sri Lanka are required to be fluent in English.
Each participant received a worksheet from MeTree that they could take home to help gather their family health histories. Once they had their information, Hu gave them copies of instructions on how to put their family health histories into the MeTree interface. She also supplied questionnaires to gather feedback about their experiences using MeTree.
“I noticed that even medical students were apprehensive about sharing their family health history,” Hu said. Culturally, Sri Lankans feel that collecting family health history is a breach of privacy. “Moving forward, we need to help teach them that it isn’t a shame to be sick or to have a disease. Sharing your family health history can help your loved ones better prevent, manage and control diseases,” Hu said.
The lack of technology is another hurdle she found during this study. Hospitals in Sri Lanka still use paper filing systems. “Providers don’t use computers in the hospitals and clinics,” Hu said, “and the Internet isn’t everywhere.” This makes implementing MeTree more challenging, and in her thesis, Hu will explore whether electronic tools can be used more broadly in developing areas.
MeTree in Lumberton
A little closer to home, second-year graduate student Ashley Wittmer, along with another graduate student and two undergrads, conducted a feasibility study of MeTree in Lumberton and Pembroke, North Carolina. The team wanted to explore how well MeTree worked in a rural, underserved area with a population of people who have lower education and literacy levels.
Participants were recruited from a parent study run by John Stanifer, M.D., MSc, nephrologist and adjunct assistant professor of medicine. Each participant received a packet of information about MeTree in the mail that included what MeTree is, why family health history is important, and what family health history means for them and their families. The packet also included a three-page worksheet participants could use to collect their family health history.
About a week after receiving their packet, the participants met with the team to fill out their family health history in MeTree. “MeTree is designed for patients to come in, sit down and fill in the information themselves,” Wittmer said. “However, due to the lower literacy rates in this area, we hypothesized that people here may have a hard time filling this out.”
The team found this to be true. They also discovered that many of the participants had limited experience with technology. Only a handful of participants had access to a computer and the Internet in their homes. And while some people owned computers, their knowledge on how to use them was minimal.
To overcome these challenges, research assistants like Wittmer sat down with the participants one at a time to go through every disease listed on MeTree, explain each disease, and either help the participants navigate the interface or use it for them.
This provides valuable information for future implementation of MeTree. “There may be some modifications we could add to the interface to help people with lower literacy better understand the questions in MeTree,” Wittmer said. This could include more explanations, pictures, or videos describing each disease.
Participants started by talking about their own health histories. Next, they described the health histories of their parents, siblings, kids, aunts, uncles, cousins, and grandparents.
Unlike the feasibility study in Sri Lanka, participants in Lumberton and Pembroke were much more open with their family health histories. From the 44 participants, researchers collected health histories from 730 people; 82 percent of these pedigrees were of high quality. To reach high quality standards for pedigrees, a person needs a full health history for at least one other member of their family.
These feasibility studies will help with a successful widespread implementation of MeTree all over the country and, potentially, the world, not just in the top medical institutions. Having a better understanding of how people perceive the importance of health histories, their abilities to navigate a software interface, and how to connect the information in various healthcare settings will help drive MeTree into the future.