Watch recordings of all sessions, and view titles and descriptions of the posters presented at the meeting.
Nakela L. Cook, MD, MPH
Executive Director, Patient-Centered Outcomes Research Institute
View the titles and descriptions of the posters presented at the meeting.
Dissemination and Implementation Awardees
Determining Implementation Success of a Patient Decision Aid for LVAD Placement
This poster describes site attributes, practices, and attitudinal orientations associated with successful implementation of a validated decision aid for patients considering left ventricular assist device (LVAD) therapy for advanced heart failure in a nine-site dissemination and implementation project.
Implementation of a Patient-Centered Online Therapy for Adolescent TBI
Brianna Maggard, Shari Wade
We describe our progress in implementing patient-choice Family Problem-Solving Therapy (F-PST) to support adolescents with behavioral health consequences of traumatic brain injury (TBI) and their families in the context of the healthcare changes precipitated by the COVID-19 pandemic. F-PST may be uniquely suited to the constraints of the pandemic. We detail opportunities for expanding training and clinical delivery as well as challenges.
Implementing a Decision Aid for Lupus in Practice Settings
There is little research into the adoption of shared decision-making aids (SDMAs) for patients with lupus. We examined how organizational context may shape members’ motivation and ability to adopt and implement SDMAs for patients with lupus. A more supportive external learning climate was seen in private clinics, single-specialty rheumatology-only clinics, and clinics with shorter-tenured members (which also had higher commitment and a more supportive internal learning climate).
Implementing a Patient Decision Support Strategy for LVAD: Mid-Project Results
Jocelyn Thompson, Dan Matlock
The DECIDE-LVAD trial assessed the effectiveness of a decision aid for patients considering left ventricular assist devices (LVAD) and their caregivers, and it found the decision aid improved patient knowledge and patient/caregiver values–choice concordance. The I DECIDE: LVAD project’s goal is to disseminate the decision aid at as many U.S. LVAD programs as possible by building a network, promoting adoption, and supporting implementation and maintenance.
Rethink the Strip: Updates on Dissemination of the Monitor Trial Results
Laura Young, Katrina Donahue
Little is known about which strategies are effective at promoting the de-adoption of low-value clinical practices. We describe the multicomponent strategy developed to promote reduction of a low-value practice: self-monitoring of blood glucose in patients with non–insulin-treated type 2 diabetes. We detail the approach used to tailor the strategy and findings from an initial trial in three primary care practices, and we offer an overview of our ongoing test of the strategy.
Advancing Rare Disease Research: Patient-Driven Engagement and Education
Christina Gonzalez-Gandolfi, Evan Hathaway
With support of a PCORI Engagement Award, we developed/hosted a multidisciplinary conference designed to engage/educate patients & medical professionals about aspects of clinical management & research in Beckwith-Wiedemann Spectrum (BWSp), in order to increase patients’ awareness/knowledge about BWSp & identify research priorities. Outcomes highlight benefits of an interactive conference design, including developing a patient-centered research project.
Barriers & Facilitators to Women with Bleeding Disorders’ Research Participation
DeBran Tarver, Janet Chupka
Bleeding disorders can have a significant impact on women’s health/quality of life. Research focused on women is needed to determine the right diagnostic criteria & ultimately improve quality of life. To understand the barriers & facilitators for engaging in research & create a network to identify research topics relevant to women w/ bleeding disorders & other stakeholders, Hemophilia Federation of America created the Females in Research Sharing & Translation Project.
Building Community Capacity to Disseminate Research Findings on Falls Prevention
Alejandra N. Aguirre, Dory Garcia
Our presentation shares lessons learned from a nonprofit-led, partnered project to build the capacity of senior service organizations to disseminate falls prevention programming in a mostly Latinx neighborhood in NYC. Project partners had decision-making power on governance practices and methodological aspects. Their ownership of the project occurred through inclusive practices informed by participatory principles and supported by group facilitation skills.
Building Interpreter Stakeholders’ Capacity in PCOR/CER Language Access Research
Glenn Martinez, Tatiana Cestari
We describe the process of engaging & building capacity for patient-centered outcomes research/comparative effectiveness research (PCOR/CER). Interpreters are a critical part of the language access infrastructure and essential stakeholders in advancing PCOR/CER focused on language access. We describe the development & delivery of our activities. Principles include investing in consensus-building processes, identifying champions, & developing follow-up activities.
Developing a Patient-Centered Research Agenda Advancing Personalized Medicine
Cynthia Bens, David Davenport
Personalized medicine seeks to understand how biological differences between people affect their health in order to develop tailored treatments. Personalized Medicine Coalition has been convening patients, patient advocates, caregivers, & other healthcare stakeholders virtually to develop a patient-centered research agenda for personalized medicine. Our poster shares final research agenda/lessons learned from engaging patients & other stakeholders in developing it.
Disseminating PCOR/CER findings through AAFP TIPS™
Christina Hester, Cory Lutgen
Patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) findings from recent projects are often not accessible to family physicians and other primary care clinicians. In response, this project delivered recent PCOR and CER findings to clinicians and patients via AAFP TIPS™, to facilitate adoption of findings concerning agenda setting into practice. A patient and physician advisory group collaborated to create AAFP TIPS: Agenda Setting.
Dissemination of Peer Support Services for People with Serious Mental Illness
People with serious mental illness get sick and die 15 years earlier than same-age peers. One reason is a fragmented health system. Peer services can be used to address health and wellness goals for people living with serious mental illness. The poster describes our engagement project, which focuses on disseminating findings from PCORI-funded research on peer services that address the health and wellness needs of people with serious mental illness.
Employers Disseminate & Build Capacity for Patient-Centered Outcomes
Susan Frank, Margaret Rehayem
Employers, who are the main providers of healthcare & are a primary source of funding for PCORI, have not effectively utilized PCORI-funded research in healthcare planning. Through our previous awards, the National Alliance is closing this gap by translating, disseminating PCORI-funded research, & building capacity through its employer network; we have seen employers & key stakeholders move toward a stronger evidence-based approach in healthcare decision-making.
Engaging Patients and Families to Find Ways to Improve Clinic Attendance
Barbara Lambiaso, Josh Licursi
The National Institute for Children’s Health Quality (NICHQ) interviewed adult patients, families and other caregivers, and providers to learn about specific barriers and cues to action that could improve sickle cell disease (SCD) clinic attendance. These interviews informed both the dissemination strategies and content to be shared with the broader field of SCD stakeholders to drive improvement in clinic attendance.
Engaging Patients with Limited English Proficiency and Their Primary Care Clinic
Joseph LeMaster, Cory Lutgen
This capacity-building engagement award used learning-in-action methods to engage limited English proficiency (LEP) patients and their clinicians in primary care practices affiliated with the American Academy of Family Physicians National Research Network. Participants developed an operational plan to guide patient-centered outcomes research (PCOR) development to engage and benefit LEP patients and clinicians, prioritizing PCOR focused on health system interventions.
Fostering Relationships with Patients and Caregivers: Moving Research Forward
In a prior project, we developed the Patient-Centered Communication in Cancer Care (PCC-Ca) instrument, a survey measure to assess & improve provider–patient communication. In this project, we developed a strategy to promote the PCC-Ca & importance of patient-centered communication & measurement that includes collaborating with Fight Colorectal Cancer & engagement with patients & caregivers. We highlight our process in the development of patient & caregiver narratives & videos.
Learning to Engage and Be Engaged: Two Intersecting Curricula
F. Daniel Davis
Learning to Engage and Be Engaged is an outgrowth of Geisinger’s commitment to patient-engaged learning and patient partnerships in efforts to improve care. Through two innovative intersecting curricula, the project team sought to equip researchers, innovators, and clinicians with the know-how to work effectively with patients and provide them with the knowledge and skills integral to maximizing their contributions to initiatives in research, innovation, and quality improvement.
PFA Summit on Measure Development: Bringing Patients and Families to the Table
Lindsey Galli, Theresa Schmidt
PFCCpartners and Discern Health convened Patient Family Advisors (PFAs) and measurement experts during the daylong 2020 PFA Summit on Measure Development. The goal was to empower PFAs to affect health care through measurement and identify opportunities to better engage PFAs in the measure development process. Priorities included establishing mentorship, partnering with funders, insisting on PFA diversity, and expanding PFA compensation.
Using the NEC Symposium to Drive Patient-Centered Research
NEC Society received a PCORI Engagement Award to host the NEC Symposium in 2019. NEC Symposium was a scientifically robust, clinically relevant patient-integrated conference focused on identifying strategies to accelerate patient-centered research. Since the Symposium, the NEC Society has used the conference’s momentum to drive research projects as well as awareness & educational efforts. The NEC Society has created an All-In Meeting framework to share with other communities.
PCORnet® Network Partners
A Reusable Geographic Module to Build Capacity for Surveillance in PCORnet
PCORnet®, the National Patient-Centered Clinical Research Network, is well suited to contributing to disease surveillance efforts. The PCORnet Coordinating Center (CC) Query Fulfillment & Analytic Tool Development teams developed a module to rapidly query geographic data using CC reusable modular programs. The geographic module was piloted at participating PCORnet DataMarts in three disease surveillance use cases: atrial fibrillation, liver cirrhosis, & uncontrolled hypertension.
Characteristics of Patients Diagnosed with COVID-19: Results from PCORnet®
National data from diverse institutions across the United States are critical for helping clinical and public health leaders respond to the COVID-19 pandemic. This study characterized a large national cohort of patients diagnosed with COVID-19 and related infections in institutions participating in PCORnet. Contributing institutions, including 36 healthcare systems in 29 states, began updating their data weekly to allow for timely data capture.
Developing and Validating a Clinically Actionable Predictive Model
In the era of population health and value-based payment, health systems are increasingly focused on improving care for high-need, high-cost (HNHC) patients. We developed and validated a clinically actionable predictive model for HNHC Medicare patients, leading to a simple tool to predict the risk of becoming an HNHC patient. This tool can be incorporated into electronic health record (EHR) systems and help health systems better target interventions.
Examining Sexual Orientation and Gender Identity (SOGI) Data in ADVANCE
Fran Ritchie, Matteo Peretti
Despite the 2016 Uniform Data System (UDS) mandate for Federally Qualified Health Centers (FQHCs; Public Health Service Act Section 330 grantees) to collect patients’ SOGI data, these data are frequently missing or not standardized. We will describe SOGI data collection and ingestion in the ADVANCE Collaborative and demonstrate potential research applications of large-scale SOGI data.
HERO Registry: A Multipronged Engagement Approach
Engagement of healthcare workers (HCWs) from a diversity of backgrounds is critical to the success of the HERO Registry. This poster will outline the steps taken to ensure that HCWs’ experiences are part of the entire research process; that co-learning & partnership principles of engagement have fostered authentic relationships with HCWs and HCW organizations; & that multifaceted approaches, especially ones that leverage systems for returning value to participants, are possible.
PCORnet® Query to Describe Nationwide Hemophilia A and B Patient Cohort
PCORnet offers a unique way to leverage structured EHR data and collect patient-reported bleeding data. REACHnet and Analysis Grouped conduct a PCORnet query to identify a nationwide cohort of patients with hemophilia A or B. Results characterize demographics, weight, BMI, and comorbidities for 11,321 patients with hemophilia A and 2,356 with hemophilia B whose treatment patterns, severity, comorbidities, clinical outcomes, utilization, and surgery can be studied.
PCORnet Study Designation: Highlighting Quality Research
Leanne Stanton, Eden Gebre
PCORnet Study Designation ensures that the PCORnet brand & mission are exemplified in current research projects that leverage the PCORnet infrastructure. By submitting for approval, investigators actively strive to contribute additional value to their study & research. This poster will describe the requirements to achieve PCORnet Study Designation, describe the benefits & value that study teams will gain from this designation, & highlight current attained studies.
Racial Disparities in COVID-19: Experiences from the HERO Registry
In response to COVID-19, the Healthcare Worker Exposure Response and Outcomes (HERO) Registry enrolled more than 15,000 workers in healthcare settings. Data showed African-American and Latinx workers were more likely to contract COVID-19. Data from the pandemic’s early days match data from across the nation. Racial disparities across healthcare workers in all professions, settings, and locations offer important lessons for addressing health disparities beyond the pandemic.
The Healthcare Worker Exposure Response and Outcomes (HERO) Program
This poster will provide an overview of the development and initiation of the HERO Research Program, an initiative to study the impact of COVID-19 on healthcare workers, including the HERO Registry and the first trial to leverage it.
Transitioning PCORnet Data Infrastructure to Support Pandemic Research
To support rapid characterization of the PCORnet COVID-19 population early in the pandemic, network partners of the National Patient-Centered Clinical Research Network (PCORnet) modified the infrastructure’s data extraction processes to support more real-time refreshes. This change supported the release of queries that could be executed frequently to provide up-to-date results to PCORnet stakeholders.
Research Awardees (Engagement)
Address Challenges to Digital Care for Adults with Chronic Conditions
Kelly Williams, Sarah Markwardt
We are conducting a randomized trial comparing three care strategies, including a digital care strategy, for adults with multiple chronic conditions. We created a framework for study stakeholders to report key technology-related implementation challenges & to provide their feedback while developing challenge-specific solutions. We outline how our stakeholder partners were engaged & present pre- & post-engagement data to show the impact of stakeholder-driven solutions.
Community Engagement and the Peer–Academic Community Partnership
Involving patients in intervention development and research is a high priority to advance mental health services. We present our application of the Peer–Academic Community Partnership to inform a comparative effectiveness study to address early mortality in people with serious mental illness (SMI). This partnership facilitates understanding of health-related information and co-production of research to develop tools designed to promote the health and well-being of people with SMI.
Engaging Stakeholders: Integrating Family Members into Buprenorphine Treatment
Opioid use disorders (OUDs) have devastating effects on individuals, families, & communities. While medication treatments for OUDs save lives & are increasingly utilized, treatment dropout rates are very high. INSPIRE is an innovative intervention that incorporates a close support person into a patient’s treatment. We describe a community-based partnership approach to engaging diverse stakeholders & how this has informed the INSPIRE intervention and research study protocols to date.
Patient and Caregiver Engagement in the PCORI Horizon Scanning System
Kelley Tipton, Marcus Lynch
PCORI Health Care Horizon Scanning System, an early warning system for healthcare interventions in development that could disrupt standard care, scans many resources to identify & monitor interventions up to 3 yrs before entry into the US healthcare system. Interventions w/ late-phase data are written as topic profiles & circulated w/ a structured review form for stakeholder comment. Stakeholders include patients & caregivers recruited from credible community sources.
Patient and Caregiver Engagement Visualization Tool for Reciprocal Communication
This poster will demonstrate the Back on Track development and use of a Patient and Caregiver Engagement Visualization Tool (EVT) to promote reciprocal communication between researchers and stakeholders. The EVT provides critical context for complex research questions throughout the life cycle of a project and serves as a catalyst for stakeholder engagement.
Research Awardees (Research)
Breast Density Knowledge in Women Recently Diagnosed with Breast Cancer
Women are increasingly being informed of their breast density. However, accuracy in women’s breast density knowledge and their worry about breast cancer diagnosis as it relates to breast density are not well understood. We present patient-reported outcomes from the Breast Cancer Surveillance Consortium (BCSC) Comparative Effectiveness of Breast Cancer Screening and Diagnostic Evaluation by Extent of Breast Density study.
External Validations of Prediction Models for Acute Coronary Syndromes
Despite the proliferation of clinical prediction models (CPMs) for cardiovascular disease, many of these CPMs have not been externally validated. It is increasingly recognized that CPMs often do not perform as expected when they are tested on new databases. Here, we conduct independent external validations of acute coronary syndrome (ACS) CPMs, using individual patient-level data from publicly available clinical trials.
How Patient Centered Are Addiction Assessment Intake Processes?
Tami L. Mark
20% of patients drop out of addiction treatment within 3 days of starting. Making intake assessments more patient-centered may help to retain patients in treatment and improve outcomes. We compared three approaches to intake assessment by surveying 851 patients starting addiction treatment about their experiences. Patients reported intake assessments based on American Society of Medicine (ASAM) criteria or a computerized version of ASAM (called Continuum) to be more patient centered
Is a Fitbit Sufficient to Increase Activity Among Older Adults with Depression?
This study paired Fitbit Charge 2s with online psychotherapy interventions. To study interventions & outcomes for each group, we assessed whether age moderated adherence. Interestingly, we found older participants had higher rates of adherence, increasing their steps with the CBT/MBCT interventions, but decreased their steps with the Fitbit only. This research indicates that using a Fitbit only may be insufficient to increase activity in older people with mood disorders & CVD risk.
Metformin Prescribing in Chronic Kidney Disease: Current and Evolving Practices
James Flory, Jea Young Min
Metformin, a first-line drug for type 2 diabetes mellitus, is contraindicated for some patients with chronic kidney disease (CKD). Using prescribing & survey data, we examine provider willingness to use metformin in CKD. We find that use of metformin in CKD may be increasing, possibly due to provider awareness of changes in metformin’s FDA label and recent evidence on metformin’s safety. But provider practices are still not fully aligned with the best current evidence.
Necessary Clinical Adjustments Among Individuals with Major Depressive Disorder
Investigating the most commonly reported reasons for psychiatric medication changes may illuminate the most prevalent barriers to successful treatments and help better inform future pharmacological methods. The Comparative Effectiveness of Pharmacogenomics for Treatment of Depression (CEPIO-D) study found that symptom persistence was the most common reason for psychiatric medication changes, suggesting that patients tend to have subthreshold symptoms, even in treatment.
Patient-Level Predictors Associated with Early Satisfaction with Clinician
Research on characterizing the factors that predict patient success and satisfaction with opioid tapering is scant; as such, we examined the relationship between patient choice and readiness to reduce opioid dose and patient satisfaction for 144 adults with chronic pain taking daily opioids. Within the context of a large patient-centered voluntary opioid tapering study, patient choice and readiness to taper significantly predicted early satisfaction with their tapering clinician.
Physicians’ Perception of Primary HPV Screening Test to Detect Cervical Cancer
We conducted a survey among OB-GYNs & primary care physicians to obtain their perceptions regarding the 2018 primary HPV screening recommendations for cervical cancer screening. The key data points included provider knowledge, perception, & practice patterns related to co-testing with cytology and HPV versus primary HPV screening. We found significant variation across physician age & specialty in their understanding of the effectiveness of primary HPV screening recommendations.
Prevalence and Incidence of Aggression in Parkinson’s and Related Disorders
Caregivers of patients with Parkinson’s disease & related disorders (PDRD) can experience significant stress related to caretaking. One possible issue affecting caregivers is patients’ physical & sexual aggression. Overall, there was a high prevalence & incidence of aggression in our PDRD cohort. The association between caregiver burden & patient depression suggests that overall disease burden may play a role. This understudied complication of PDRD warrants further exploration.
Returning to Care: Preferences of Patients with COVID-19–Delayed Colonoscopies
Karen Sepucha, KD Valentine
Patients’ screening colonoscopies have been delayed or canceled due to COVID-19. Efforts are underway to resume colonoscopies, but patients’ attitudes & concerns about tests in this environment are largely unknown. This poster will show data on anxiety, concerns, & willingness to return from patients whose screening colonoscopies were delayed or canceled due to COVID-19. These data are helping the MGH Division of Gastroenterology prioritize patients on the wait list.