Here are some of the projects currently underway at the Health Decision Sciences Center and the Informed Medical Decisions Program:
Impact of EMR Documentation on Shared Decision-Making and Informed Consent
Years: 2023-2025
This project will leverage the routine collection of NQF-endorsed measures (#2962 Shared Decision Making (SDM) and #2958 Informed, Patient-Centered Surgery), Patient-Reported Outcome Measures (PROMs), and EHR data at Mass General Brigham hospitals. We plan to investigate the impact of informed consent and SDM on clinical outcome measures. We further aim to develop recommendations for the next generation of SDM tools and informed consent process clinical support to optimize current technology, improve outcomes and improve patient and provider experience.
Funding from the Controlled Risk Insurance Company (CRICO)
BREATHE STUDY: Boosting REsources And caregiver empowerment for Trach care at HomE
Years: 2023-2028
Collaborating with 5 other sites, the goals for this study are to reduce the burden on caregivers of children with tracheostomies, improve the safety and outcomes for children with tracheostomies who are living at home, and identify facilitators and barriers to implementation of the programs. This study will evaluate the effectiveness of two educational discharge programs to advance our understanding of how to support caregivers post-discharge.
Funding from the Patient-Centered Outcomes Research Institute (PCORI)
IMPACT SDM Study: IMproving treatment decisions for Patients with AortiC stenosis Through Shared Decision Making
Years: 2023-2028
Collaborating with 7 other sites, the goal for this study is to generate evidence of the effectiveness of a multi-faceted implementation strategy (a toolkit plus external facilitation) in promoting use of evidence-based SDM interventions (DAs and clinician training) to achieve SDM. This study will help the Heart Valve Teams ensure that patients are meaningfully involved in treatment decisions, well informed and receive treatments that reflect what matters most to them. The three aims of the study are: Aim 1: Determine effectiveness of the interventions (patient decision aid and clinician training) in achieving shared decision making, Aim 2: Determine the reach of the decision aids and adoption of training, and Aim 3: Explore potential mechanisms of effective implementation at the patient-, clinician- and clinic-level using mixed methods and identify barriers to sustained use.
Funding from the Patient-Centered Outcomes Research Institute (PCORI)
Consumer Assessment of Healthcare Providers and Systems (CAHPS VI)
Years: 2022 – 2027
The CAHPS surveys are the most widely used patient experience surveys. The main goal of the grant is to develop and evaluate the next generation of CAHPS surveys. Dr. Karen Sepucha and others in the HDSC are working with practices to implement quality improvement programs to increase shared decision making and CAHPS scores.
Funding from the Agency for Healthcare Research and Quality (AHRQ)
Engaging Patients Through Community Outreach
Years: 2022-2023
The major goals of this project are to engage with the local Spanish-speaking communities by (1) reaching primary care providers at community health centers and encouraging them to engage patients earlier in their decision process to ensure they are informed and involved in their care for their hip or knee pain and (2) engaging Spanish-speaking social media users in the Boston area in a direct-to-consumer media campaign to help ensure people are inform and engage regarding their hip or knee pain.
Funding from The Donaghue Foundation
Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers: A Mixed Methods Study
Years: 2020 – 2025
The major goals of this project are to (1) develop evidence on the comparative outcomes of surgery for patients living with dementia (2) characterize the surgical decision making process and identify key needs and gaps and (3) develop recommendations to improve decision making for this vulnerable population.
Funding from the National Institutes of Health (NIA R01)
Development and implementation of electronic decision aids for genetic testing in inherited cancer syndromes
Years: 2020 – 2025
The major goals of this project are to develop two decision aids, evaluate whether they are as effective as a consult with a genetic counselor, and examine implementation of the tools into routine care across different healthcare settings.
Funding from the National Institutes of Health (NCI U01)
Learning Collaborative to implement patient decision aids for elective orthopedic surgery
Years: 2020 – 2023
The purpose of the study is to improve the quality of orthopedic surgery decisions by implementing patient decision aids into routine care for hip, knee and spine patients. Studies have shown that shared decision making (SDM), supported by use of patient decision aids, can improve patient knowledge, reduce decision conflict and even improve health outcomes. However, there are few examples implementation of SDM and decision aids in routine care. The goal of this study is to engage a dozen clinics and to work with them to deliver a decision aid to at least 50% of eligible patients before their surgery. There will be three phases of this project: Phase 1: Local Implementation, Phase 2: Learning Collaborative, and Phase 3: Implementation.
Funding from the Patient-Centered Outcomes Research Institute (PCORI)
ACP Peace: Promoting Effective & Aligned Communication in the Elderly
Years: 2018 – 2023
The goal of this project is to improve the quality of medical care delivered to older Americans with cancer through complementary interventions: clinical communication skills training (VitalTalk Training) and patient video decision aids (ACP videos). This is a randomized trial being conducted in three large health care systems with 4500 patients over age 65 with advanced cancer. The goal is to increase documentation of advance directives among participants.
Funding from the National Institutes of Health (NIH)
Patient-directed Decision Aid Ordering Projects
Several practices have been utilizing a workflow that provides patients with the opportunity to self-order two decision aid programs of interest. An order sheet was developed with a short description of top decision aids. This order sheet is given to all patients arriving for their annual visit. The front desk staff will give the patient the order sheet to review. The medical assistant will collect the order form during work-up and place the decision aid order in the electronic medical record. Patients have been very interested in ordering programs both for themselves or a family member. We have seen an increase in decision aid orders over the last few years. In June 2018, we had our 50,000 decision aid ordered.
Funding from Massachusetts General Physicians’ Organization and Partners Center for Population Health
Enabling a Paradigm Shift: a Preference-tolerant RCT of Personalized vs. Annual Breast Cancer Screening
This is a large randomized trial comparing the effectiveness of annual mammography with personalized screening for breast cancer. The overall study is being run by Dr. Laura Esserman at University of California San Francisco, and Dr. Sepucha is co-leading the patient reported outcomes group to understand patients’ decision making about trial participation, adherence to screening recommendations, and the role of genetic testing on anxiety and regret among participants.
Funding from the Patient-Centered Outcomes Research Institute (PCORI)