Integrating Patient Generated Family Health History From Varied Electronic Health Record (EHR) Entry Portals

2014-08-27 03:19:18 | BioPortfolio


In the 21st century, the importance of family health history will increase as it will be essential to put detailed personal genetic information into the context of an individual's health, namely the context of how the shared code has played out in an individual and his/her closest relatives. These scientific developments in the investigators' understanding of genetics will demand a more comprehensive family history dataset for all patients, and the time limitations on healthcare providers demand a technology-driven solution that integrates an individual's knowledge of their family history with the medical records maintained by their health care providers. A solution does not currently exist by which most Americans can organize their family health history and then place it into their electronic health record (EHR). The investigators propose to develop and compare three different ways of proactively collecting family history information from patients using computer technology independent of a health care visit, including telephone (interactive voice response technology), tablet computers in a physician's waiting room, and a secure internet portal at home. These tools will be based on the US Surgeon General's My Family Health Portrait, an electronic family history collection tool. Family history data will be transferred and integrated with a patient's EHR in a large primary care network. This project will seek to demonstrate that family history data can be accurately reported by diverse patients using these technologies, and that these data can be integrated to tailor an individual's health care based on their familial risk.


Background: The long established wisdom of including family health history as a key part of an individual's medical record has been invigorated by the new emphasis on personalized medicine. While in the past, family health history was used to understand an individual's disease risk and to focus disease prevention efforts, in 21st century medicine, family health history's importance will increase as it will be essential to put detailed personal genetic information into a clinical context, namely the context of how the shared code has played out in a person's closest relatives. This new need for family health history will demand a more comprehensive family history dataset for all patients, and the time limitations faced by healthcare providers demand a technology-driven solution whereby the patient performs primary data entry and the provider then refines these data. Solutions do not currently exist by which most Americans can organize their family health history and then place it into their electronic health record (EHR). My Family Health Portrait (MFHP) is an open source, electronic family history collection tool developed by the Surgeon General that offers interoperability with EHRs, yet to our knowledge has not been widely integrated because of limitations in the capacity of many EHRs to accept these data, and barriers to the systematic collection of these data in clinical practice. Additionally, obstacles exist for those individuals who are not computer literate or do not have access to a home computer. In order to capture patient-generated family history data across diverse patient populations, EHR's may need to offer patients a variety of data entry options which allow for differences in preference, convenience, computer literacy, and computer availability. This proposal seeks to develop new resources for family history data entry into the EHR. These resources will be developed, tested and validated in a primary care setting within of a large complex healthcare system.

Research Plan: The proposed project will examine the reach, effectiveness, adoption and implementation of three innovative portals to transfer and integrate patient generated family history data with an EHR.

Specific Aim 1 (technical development) is to develop the three portals for entry of patient generated family history data integrated with an EHR. The pathways will include: : (1) computer tablets in waiting rooms to complete the MFHP, (2) a secure internet portal to transfer data collected by patients at home using MFHP, and (3) an interactive voice response (IVR) system to collect the necessary data elements by phone. Each of these modalities will interface with the EHR of a large health delivery system using current data standards. Each of these modalities will be designed to interface with the EHR of a large health delivery system using current data standards using current data standards.

Specific Aim 2 (content development and validation) is to evaluate facilitators and barriers to the adoption, and implementation of these three electronic portals by assessing differences in patient preferences, privacy concerns, convenience, and understanding. The validity of the family history data collected by each of these three portals will also be assessed by a genetic counselor.

Specific Aim 3 (pilot randomized controlled trial) is to conduct a 4-armed pilot randomized controlled trial (RCT) to measure the reach and effectiveness of integrating this family history data with a patient's EHR. The trial will examine and compare changes in family history documentation, patient-doctor discussion of family history, and patient and provider satisfaction with each data entry portal described in Aim 1, as well as a control arm. The trial will be conducted as a pilot cluster RCT in selected practices within the Brigham and Women's Primary Care Practice-Based Research Network.

Potential Impact: The impact of obtaining accurate family history data and integrating this with an individual's health record are substantial, and will be of growing importance as our understanding of the genome advances. This project will ultimately contribute to a better understanding of how available technologies can be integrated with EHR's to obtain accurate family history in ways that allow for widespread acquisition and integration of accurate family history data in a variety of settings and diverse patient populations. The technology and lessons learned from this project will be exportable to healthcare settings throughout the United States.

Study Design

Allocation: Randomized, Endpoint Classification: Efficacy Study, Intervention Model: Parallel Assignment, Masking: Open Label, Primary Purpose: Health Services Research


Family Characteristics


Electronic Health Portals for collecting Family History data


Brigham and Women's Hospital
United States


Not yet recruiting


Brigham and Women's Hospital

Results (where available)

View Results


Published on BioPortfolio: 2014-08-27T03:19:18-0400

Clinical Trials [3484 Associated Clinical Trials listed on BioPortfolio]

Impact of Family History and Decision Support on High-risk Cancer Screening

Family health history can help identify patients at higher than average risk for disease. There is no standardized system for collecting and updating family health history, using this info...

Texas Family Health Patterns: A Study Across Generations

The researchers are studying factors that may increase the risk for alcohol and drug use in individuals who do not have any problems with these substances. This study will be looking at h...

Probing the Cannabinoid System in Individuals With a Family History of Psychosis

The overall purpose of this study is to determine whether a family history of psychosis is associated with an altered cannabinoid system. This will be tested by studying individuals with a...

Collecting Blood and Tissue Samples From Family Members of Patients With Pancreatic Diseases, Pancreatic Cancer, and Melanoma

RATIONALE: Collecting and storing samples of blood and tissue from family members of patients with cancer to test in the laboratory may help the study of cancer in the future. PURPOSE: Th...

Understanding Clinical Phenotype and Collecting Biomarker Samples in C9ORF72 ALS

This research study is being performed to better understand a specific form of Amyotrophic Lateral Sclerosis (ALS) caused by a mutation (or abnormality) of the C9ORF72 gene. This mutation ...

PubMed Articles [31299 Associated PubMed Articles listed on BioPortfolio]

Association of Percentage Body Fat and Metabolic Health in Offspring of Patients with Cardiovascular Diseases.

Family history was one of the major risk factors for developing adverse health outcomes such as metabolic syndrome (MetS), type 2 diabetes mellitus (DM) and hypertension (HTN). Our aim was to examine ...

Enhancing cultural considerations in networks and health: a commentary on racial differences in family health history knowledge and interpersonal mechanisms.

In this commentary, I commend and expand upon the article of Lin et al., "Racial differences in family health history knowledge of type 2 diabetes: exploring the role of interpersonal mechanisms." In ...

How Online Family History Tool Design and Message Content Impact User Perceptions: An Examination of Family HealthLink.

Family health history tools have the ability to improve health outcomes and promote patient-provider communication, but some research suggests their effectiveness is limited. Tool design features may ...

"Imagine a clinical world without family systems thinking": Comment.

Comments on an editorial by C. T. Fogarty and L. B. Mauksch (see record 2017-56601-001). The editorial discussed collaborative family health care and the importance of family and social context to yie...

Childhood Family Instability and Young Adult Health.

American children live in a variety of family structures throughout their childhoods. Such instability in family arrangements is common and has important demonstrated implications for short-term child...

Medical and Biotech [MESH] Definitions

Health-related data created, recorded, or gathered by patients, family members, or caregivers, to help address a health concern. Distinct from data generated in clinical settings and through encounters with providers.

The science and art of collecting, summarizing, and analyzing data that are subject to random variation. The term is also applied to the data themselves and to the summarization of the data.

Organizational framework for the dissemination of electronic healthcare information or clinical data, across health-related institutions and systems. Its overall purpose is to enhance PATIENT CARE.

Systematic gathering of data for a particular purpose from various sources, including questionnaires, interviews, observation, existing records, and electronic devices. The process is usually preliminary to statistical analysis of the data.

The health status of the family as a unit including the impact of the health of one member of the family on the family as a unit and on individual family members; also, the impact of family organization or disorganization on the health status of its members.

More From BioPortfolio on "Integrating Patient Generated Family Health History From Varied Electronic Health Record (EHR) Entry Portals"

Quick Search


Relevant Topics

Within medicine, nutrition (the study of food and the effect of its components on the body) has many different roles. Appropriate nutrition can help prevent certain diseases, or treat others. In critically ill patients, artificial feeding by tubes need t...

Health care (or healthcare) is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in humans. Health care is delivered by practitioners in medicine, chiropractic, dentistry, nursing, pharmacy, a...

Searches Linking to this Trial