Current Projects

Here are some of the projects currently underway at the Health Decision Sciences Center and the Informed Medical Decisions Program:

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)

The Orthopedics Implementation Study

Years: 2020 – ongoing

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)

Engaging patients in decisions about rescheduling colonoscopies delayed due to COVID-19

Years: 2020 – ongoing

Given the COVID-19 pandemic,, one pressing issue facing health care systems is how to manage the large and growing backlog of screening tests and elective procedures. Managing demand with reduced capacity represents a key new challenge for health care delivery systems during this crisis. Many patients may feel differently about the value of seeking healthcare, including cancer screening, during the COVID-19 pandemic. In this PCORI-funded study, we will examine patients’ preferences for rescheduling a screening or colonoscopy that was delayed or postponed due to COVID. Then, we will study whether shared decision making tools and training will increase patients involvement in decisions, increase their intention to follow through with some type of colon cancer screening, and reduce decisional conflict. There are many challenges to resuming healthcare during this crisis, and this study will address important research questions about how to do this in a safe, equitable and patient-centered manner.

Funding from the Patient-Centered Outcomes Research Institute (PCORI)

Promoting Informed Decisions about Cancer Screening in Older Adults (PRIMED Study)

Years: 2018 – 2022

This comparative effectiveness study will address an important gap in our understanding of how to support clinicians and older patients (76-85 yrs) in making high quality decisions about whether to continue colorectal cancer screening. This multi-site randomized trial compares two different decision support strategies. The study results will have wide reaching implications for use of shared decision making in many other decisions for older adults, such as continuing mammography or prostate cancer screening and continuing medications for high cholesterol or hypertension.

Funding from the Patient-Centered Outcomes Research Institute (PCORI)3

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)

Adapting Measures of Decision Quality for Common Medical Conditions

Years:  2018 – 2021

The project will advance our understanding of how to best measure shared decision making (SDM) across a range of common clinical conditions (e.g. prostate cancer screening, depression, low back pain). This study will summarize the existing evidence of the reliability and validity of the SDM Process score and conduct additional studies in new patient populations (e.g. pediatrics) to extend the generalizability of the measure.

Funding from the Agency for Healthcare Research and Quality (AHRQ)

Consumer Assessment of Healthcare Providers and Systems (CAHPS V)

Years: 2017 – 2022

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 to examine ways to incorporate shared decision making and measurement of decision quality into the CAHPS assessments.

Funding from the Agency for Healthcare Research and Quality (AHRQ)

Participation in a Trial Evaluating the Alignment of Treatment Preferences and Repair Type for Veterans with Abdominal Aortic Aneurysm (AAA)

Years: 2017 – 2022

Collaboration on a cluster-randomized trial being conducted in a network of VA Medical Centers to assess patient and surgeon preferences for AAA repair and whether a decision aid helps match treatment to patient preferences. Shared decision making skills training is offered to participating surgeons.

Funding from the Veterans Affairs (VA)

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

The EPIC Roundtrip Project – Qualitative Assessment

The EPIC Roundtrip is the ability for providers to electronically prescribe patient decision aids in Epic, and for patients to electronically send a summary of their knowledge score, preferences and treatment leaning back to their provider. We will conduct up to 20 interviews with patients and providers to evaluate how they interact with the Roundtrip process.

Funding from Healthwise

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)

Measuring Decision Quality for Patients with Coronary Artery Disease

The purpose of the study, led by Drs. Dudley and Lin at the University of California San Francisco is to develop and evaluate a new survey instrument to measure decision quality for coronary revascularization decisions.

Funding from the National Heart, Lung, and Blood Institute (NHLBI)