The overall objective of this project is to refine and study Nest, a software platform
that integrates genetic data into patient care, with a goal of improving adherence to
recommended care and empowering patients and clinicians to utilize genetic information
longitudinally. Nest stores structured genetic results in the electronic medical record
(EMR) and provides an interface for clinicians to order guidelines-based, personalized
care plans with automated charting. For patients, the mobile friendly platform serves as
a secure tool to store results, understand risks and recommended care, adhere to care,
and share results with at-risk relatives. To facilitate continuity of care, patients can
share genetic results and care plans with other clinicians. For this application, the
investigators propose two phases. During Phase 1, the investigators will pilot the
EMR-integrated Nest platform to ensure that the intervention is feasible and acceptable
to clinicians and patients. Phase 2 will test Nest efficacy to improve patient and
clinician experiences and outcomes, including patient knowledge of cancer risks and
recommended care, and will assess implementation outcomes to facilitate future
dissemination. The investigators will leverage a team with complementary expertise in
genomic data, business, software development, and care of young adults with cancer risk.
This team has already successfully collaborated in development of a patient-facing
intervention for adolescents and young adults (AYAs) with cancer risk syndromes, and now
seeks to meet the critical need for integrated and coordinated care, crossing patients,
clinicians, and health systems. The long-term goal of this application is to harness an
EMR integrated platform to improve care and outcomes for AYAs with cancer risk syndromes,
as an initial step toward genomic data integration for an ever-increasing array of
conditions with clinical implications.
Phase 1 Aims:
Aim 1: Pilot Nest among 20 young adult hereditary cancer patients and up to 20
clinicians, refining implementation to ensure feasibility and acceptability. Our working
hypothesis is that the Nest intervention will be feasible and acceptable to patients and
clinicians.
Phase 2 Aims:
In Phase 2, the investigators will Implement the Nest intervention by conducting a
randomized trial at a single large cancer center and its associated community-based
satellites.
Aim 1: Measure the impact of the Nest intervention on patient knowledge of cancer risk
and recommended care, psychological distress, and information sharing with family and
clinicians.
Our working hypothesis is that patients assigned to the Nest intervention will have
increased knowledge of cancer risks and recommended care, without increased psychological
distress, and will have increased frequency of information sharing with family and other
clinicians.
Aim 2: Examine impact of the Nest intervention on clinician behavior, including
guideline-concordant orders and referrals as well as EMR documentation. Our working
hypothesis is that patients assigned to the Nest intervention will have higher rates of
guidelines-concordant orders and referrals and Nest Clinical Decision Support (CDS)
summaries in EMR documentation.
Aim 3: Evaluate implementation outcomes, including patient and clinician utilization of
Nest features, to facilitate future dissemination. The investigators will examine the
frequency of utilization of Nest features, including patient access and sharing of
information and clinician use of orders and documentation templates, to assess features
that are most useful and/or in need of further refinement.
Impact: At the completion of the proposed research, our expected outcomes are: to have a
refined platform that results in increased knowledge, information sharing, and guidelines
concordant care.
