Integrating Patient Generated Family Health History From Varied Electronic Health Record (EHR) Entry Portals
Integrating Patient Generated Family Health History From Varied Electronic Health Record (EHR) Entry Portals
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.
Inclusion Criteria:

 Male and Female Patients who:

 -  receive primary care at one of the study selected Primary Care Practices,

 -  are between 18-75 years old,

 -  are English or Spanish speakers, and

 -  have appointments scheduled in the upcoming 1 - 3 months for an annual or
 comprehensive visit.

 Exclusion Criteria:

 -  We will not include individuals over the age of 75 because the role of family risk
 assessment and prevention is less established.

 -  Also will not include non-English or non-Spanish speakers.

 -  Patients will also be excluded if they are hearing impaired.