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Our opening plenary session will put the voices of patients, caregivers, and their advocates front and center in a discussion of why their needs and values matter in health research and decision making. Our keynote speaker and plenary panel will talk about what has and still needs to change in health research and delivery to be sure studies and outcomes that matter to patients become the rule rather than the exception. And they will look at the opportunities patient-centered outcomes research and comparative clinical effectiveness research present to help patients and those who care for them make better-informed healthcare decisions.
PCORI 2016 Plenary Session One Slides 11.16.16
There has been a surge in recent years in efforts to make healthcare research and delivery more patient-centered. This includes the 2010 creation of PCORI as the Nation’s main funder of comparative clinical effectiveness research that focuses on outcomes important to patients. During the session, we will look at the evolving changes in the healthcare landscape in recent years and how patient-centered outcomes research has led or can lead to care that is more effective and useful to patients, their families, and clinicians. This session will focus on the potential drivers of change in health care at the individual, community, institutional, health system, and public health levels. Finally, there will be a discussion of what research directions need greater emphasis and how patient-centered outcomes research can contribute going forward.
PCORI 2016 Plenary Session Two Slides
The older adult population is the fastest growing portion of the population
worldwide. Older adults make up the majority of patients for certain health
conditions including cancer, cardiovascular disease, arthritis, and Parkinson’s disease.
Typically, clinical trials conducted in adult populations include patients between the
ages of 18 and 64 years. Improving communication about age-related concerns that
could affect health outcomes is needed for individuals age 65 years and older. This
session will highlight three research studies focused on improving complex medical
decision making among older adults as it relates to cancer treatment, advanced
care planning, and health plan selection for Medicare Part D enrollees. This session
will highlight the projects individually, the work done to date, outcomes, and how to
engage patients and stakeholders. The session will also include a panel discussion
focusing on the challenges and successes panelists have had applying patient-
centered outcomes research concepts in this field.
Golden Years (All Speakers)
Maximizing the use of effective high-value care across the care continuum is a priority
for all stakeholders within the healthcare system. One of the barriers slowing progress
toward the optimal use of health care is the lack of rigorous comparative effectiveness
research that evaluates patient-centered outcomes, including benefits and harms at
the individual level. Multi-stakeholder-led research has the potential to capture the
most relevant aspects of the decisional dilemmas encountered when considering
the appropriate use of more versus less care. This interactive session will highlight
several PCORI-funded studies that are evaluating the appropriate use of alternatives to
immediate or continuous treatment. Discussion will explore the barriers and facilitators
to initiating a comparative effectiveness study evaluating how to de-escalate treatment,
and will consider how cultural readiness and stakeholder partnerships influence the
capacity to generate rigorous and robust evidence.
This session will be an opportunity to share emerging practices in engagement of
patients and other stakeholders in patient-centered comparative effectiveness research.
PCORI staff will present recent data about engagement collected from PCORI awardees
and their partners to provide an overview of how patients and other stakeholders
are involved in PCORI-funded projects. A panel of current funded investigators and
partners will address challenges that awardees and their partners have faced and their
strategies for resolving those challenges. Breakout groups will provide an opportunity
for attendees to discuss reactions to the presentations, share promising practices from
their own experiences, and identify other challenges and solutions.
Patient and Stakeholder Engagement in Research
Data from systematic reviews have shown that there are promising strategies for
increasing recruitment to trials, yet recruiting participants into clinical trials remains
one of the biggest challenges in the research field today. This session will feature
discussions of public awareness of clinical trials, including how American knowledge
and perceptions of public health research impact the research field. Presentations
by three PCORI-funded
PIs, and investigators, and their partners will also cover
(1) strategies to assess trial feasibility and site selection, (2) effective modes of delivery
and partnerships, and (3) recruitment communication planning. The focus by PCORI
awardees will be on the upstream planning necessary for successful recruitment
launch and trial success, specifically on data-driven
approaches to selecting appropriate
sites and patient/stakeholder engagement required to design outreach/communication
efforts. Participants will engage in a session designed to provide insight and tools to
inform the development of stronger studies and successful recruitment efforts.
Consolidated_Slides_Know Before You Go
While obesity trends have plateaued in recent years, prevalence remains unacceptably
high, affecting over one-third
of adults and around 20 percent of children and
adolescents. Working with limited knowledge of personal preferences, and against
cultural and community obstacles, healthcare providers often have little success in
influencing their patients to make necessary behavioral changes. This panel highlights
select obesity research funded by the Patient-
Centered Outcomes Research Institute
to fill specific evidence gaps in the treatment and management of obesity. Patientcentered
outcomes research involves stakeholders in helping to identify relevant
research questions and in collaborating on the design and implementation of studies
that will improve their ability to make informed choices among treatment options. The
presentations evaluate a range of interventions, with a common theme—the design
and implementation of each one has been guided by patients and other stakeholders
to provide critical information on how to best treat obesity. Presenters will focus on the
evidence gap their project is aiming to fill and how the findings will likely impact practice.
Obesity Breakout Session Slides- All Compiled Fina
This session will explore the challenges and opportunities associated with conducting
patient-centered outcomes research (PCOR) related to the treatment and management
of rare diseases. It will describe ongoing PCOR studies of management approaches
for two different rare conditions as well as a prospective registry designed to support
clinical research on pediatric rheumatic diseases. Presentations will provide an overview
of current progress, discuss the challenges associated with conducting research and
building registries, explore strategies for overcoming those challenges, and consider
how lessons learned can help inform future research activities. A representative of
PCORI’s Advisory Panel on Rare Disease will moderate the session. Panelists will include
three PCORI awardees currently engaged in rare disease research activities and their
patient/stakeholder partners; their projects fall under PCORI’s broad funding initiatives
and PCORnet (National Patient-Centered Clinical Research Network).
Anxiety and depressive illnesses are some of the most common mental health
disorders in the country, with a lifetime prevalence of 28.8 percent and 16.6 percent
of the population, respectively. They are associated with a significant public health
burden due to medical costs, missed days from work and school, and decreased
productivity. However, less than half of Americans with mental health disorders
receive treatment annually. Although many patients prefer behavioral interventions
to pharmacological treatments, and some behavioral interventions are highly
effective for depression and anxiety, many Americans are unwilling or unable to
access these treatments in their current forms—including those who cannot afford
treatment, those who do not seek treatment due to stigma, and many who have a
dearth of trained professionals in their area. Interest in novel methods of delivering
evidence-based interventions has emerged in response to these barriers to evidencebased
care. Investigators will discuss PCORI-funded projects featuring novel delivery
methods for evidence-based interventions, including peer-led support groups,
telehealth, and co-location of mental health clinicians in primary care settings. Both
investigators and patient partners will discuss their experiences and challenges
conducting these trials, which are at various stages of completion.
Novel Delivery of Evidence-Based Behavioral Interv
An estimated one in four Americans lives with more than one chronic condition. This is a major challenge for individuals, their families, and the US healthcare system as a whole given the need for substantial levels of care and, in many cases, poor health outcomes. Managing chronic conditions is often uncoordinated, focusing on addressing individual diseases or conditions rather than focusing on the whole person and their challenges. During this session, we will discuss ways in which evidence from patient-centered outcomes research and comparative clinical effectiveness research can improve the health outcomes of people with chronic conditions, with a particular focus on children and older adults.
Transferring from one healthcare setting to another, or even to home, can be a
vulnerable time for patients and those who care for them, prompting researchers
and policy makers to identify and validate strategies that improve transitions of care.
For this reason, PCORI has invested more than $68 million in 20 transitional care
research projects. The studies in the Transitional Care Evidence to Action Network
represent five PCORI science programs and multiple funding mechanisms.
These studies are designed to reduce readmissions, enhance patient experience,
and improve outcomes by evaluating transitional care interventions in diverse
research teams working in transitional
care to facilitate collaborative learning and leverage promising practices. This session
(1) describes the TC-
E2AN’s approach to engaging researchers and stakeholders,
noting accomplishments from the first 18 months and highlighting upcoming
activities; and (2) showcases two studies utilizing robust evidence and strategies for
translating evidence into action.
Consolidated TC-E2AN Panel Discussion Slides
PCORnet (National Patient-
Centered Clinical Research Network) is in the second
phase of infrastructure development to make clinical research faster, easier, and less
costly. In August 2015, the PCORnet Governance Policies were approved, establishing
three key content committees to drive forward PCORnet development. The Data,
Engagement, and Research Committees enhance the distributed leadership of
PCORnet by harnessing the power of the Clinical Data Research Networks (CDRNs)
Powered Research Networks (PPRNs). This session, led by the Data,
Engagement, and Research Committee Chairs, will emphasize advancements
in increasing the focus on enhancing public trust, models of engagement for
participants and clinicians, research resources within PCORnet, current research
underway utilizing the network, and advancements in the data infrastructure.
This breakout session will showcase the progress in the areas, led by the Data,
Engagement, and Research Committees, in strengthening PCORnet’s ability to
conduct more robust patient/participant-
PCORnet Breakout Session_Compiled (final)
studies near their end dates, PCORI wants its awardees to get
advice on how to succeed with top-
tier journals. This 90-
minute breakout session
is an opportunity to engage in conversation with journal editors who are interested
in attracting manuscripts that describe patient-centered
studies. Each editor will speak for about 10 minutes. A brief moderated panel
discussion will follow. A question-
period will conclude the session.
Christine Laine Meet the Editors
Howard Bauchner--Meet the Editors
Jose Merino--Meet the Editors
Larry Peiperl--Meet the Editors
Robert Ferrer--Meet the Editors
Previous research has identified pervasive disparities in access to high-
health care and worse health outcomes for specific populations across multiple
conditions and multiple settings, outcomes that are based on race/ethnicity, gender,
geographic location, socioeconomic status, disability, and other factors. This panel
highlights research funded by the Patient-Centered
Outcomes Research Institute
aimed to improve outcomes for populations at risk for disparities. The panel will
discuss interventions set in the home, schools, hospitals, and clinics for a range of
health conditions and topics. Presenters will focus on preliminary findings from
their research as well as lessons learned related to implementing comparative
effectiveness research in diverse populations.
Chronic pain exerts a significant burden on the general population, with
approximately 35 million Americans suffering from chronic pain and costs of
$635 billion per year to the US healthcare system. Although opioid analgesics are
commonly used to treat chronic noncancer pain, little is known about the safety
and effectiveness of long-
term opioid therapy. At the same time, mounting evidence
suggests that opioids are associated with increased risk of significant harms including
misuse, dependence, and overdose. Subsequently, interest in nonpharmacological
strategies has increased. The current symposium will discuss several projects,
including two funded by PCORI, that address alternative approaches for chronic
pain, and implementation challenges, as well as solutions to conducting comparative
effectiveness in this area.
ALL SLIDES -- Comp Effectiveness Reserach on Nonph
Researchers agree that antibiotic resistance is a growing public health concern in
the United States. Patients infected with antibiotic-resistant bacteria are challenging
to treat and pose a greater threat to others because the resistant bacterium may
spread. Antibiotics do not work as well as they once did because of years of misuse or
overuse, which can lead to:
• Longer and more complicated illnesses
• More clinician visits
• Increased use of stronger and more expensive drugs
• More deaths
The more that is known about how antibiotics are used in all healthcare settings,
the more effective efforts can be to improve how antibiotics are used in the right
infections and right people. When almost half of all antibiotic prescriptions may be
unnecessary or inappropriate, it is important to focus on comparative effectiveness
of management options for antibiotic treatment choices in a range of conditions in
hospitals and community settings.
Smarter Antibiotics Facebook Live Workshop
Steady progress is being made in meaningfully engaging stakeholders in health research. Bringing diverse stakeholders to the table offers unprecedented opportunities to design and conduct research that serves patients more effectively than ever before. But it also poses challenges, such as how to truly find common ground when patients, professionals, and other healthcare stakeholders bring different needs and perceptions to the discussion. In this session, we will talk about how we can refine a health research and healthcare agenda and culture that focus on improving patient outcomes while ensuring that all stakeholders—patients, clinicians, insurers, employers, industry, policymakers and others—have a real voice in the process while ultimately acknowledging that the patient is at the center.
PCORI 2016 Plenary Session Four Slides
Initiatives to disseminate and support the implementation of PCORI’s research findings are critical to ensuring that these findings contribute to improving health services, and ultimately, health outcomes. Participants will learn more about PCORI’s initial activities in dissemination and implementation, and to discuss more broadly the challenges and opportunities in bringing research into practice.
Arnold--PCORI Dissemination and Implementation Wor
Battles -- PCORI Dissemination and Implementation
Boehmer Leppin--PCORI Dissemination and Implementa
Broitman-- Dissemination and Implementation Worksh
Flum--Dissemination and Implementation Workshop
Gayer -- Dissemination and Implemenation Workshop
Jinnett--Dissemination and Implementation Workshop
Lomotan - Dissemination and Implementation Worksho
Maurer -Dissemination and Implementation Workshop
This interactive workshop is designed to provide you with the tools and strategies to develop a responsive PCORI application. This workshop will offer an overview of PCORI and our priority topics for research, funding announcements, application process, research partnerships and engagement.
The workshop will also provide opportunities to meet PCORI staff, ask questions, obtain resources, and network with other participants. Our goal is to continue building a community of researchers who have the passion to participate in patient-centered outcomes research.
Bailey--Getting to Know PCORI
Gentry--Getting to Know PCORI
Hotchkiss-Getting to Know PCORI
Solomon --Getting to Know PCORI
Welcome and Overview_Getting to Know PCORI - Final
The morning session will lay out the distinct challenges that apply to human subjects protections in pragmatic clinical trials and other prospective clinical studies studying standard of care interventions, with issues that include determining whether the trial meets the definition of minimal risk, obtaining informed consent, and implementing centralized Institutional Review Board (IRB) approaches. The focus will be on current thinking in addressing the ethical and regulatory challenges in ways that balance the need for high-quality protection of trial participants with the goal of efficiently implementing these trials and generating evidence that can be used to improve clinical care for patients. The session will have three podium presentations of 15 minutes each to allow time for audience questions and discussion.
The development of PCORnet has supported PCORI’s strategic priorities of developing patient-centered data networks and expanding researcher and patient capacity to participate in PCOR. The PCORnet Workshop will present the current and future capabilities of PCORnet to investigators (potential users) and funders for studies utilizing PCORnet.
The workshop will begin by highlighting current research that is underway. The preliminary panel presentation will present an in-depth look at a few examples of studies, highlighting the range of potential capabilities of PCORnet to allow attendees to understand the early experience of using PCORnet. Following the opening session, an interactive poster session will allow attendees to explore current research underway, including clinical trials and observational studies and to interact with the investigators. The afternoon session will feature tools and resources available within PCORnet to investigators. These include highlighting the PCORnet Collaborative Research Groups and PCORnet Front Door, the platform for accessing PCORnet.
The purpose of this interactive workshop is to identify and promote emerging promising practices and principles in the early phase of patient-centered outcomes research (PCOR), known as “pre-engagement,” when trustworthy, bi-directional relationships are formed. The “pre-engagement” phase of PCOR has been acknowledged as “one of the most important (but often overlooked) phases of patient engagement in research, especially when working with underrepresented populations” (University of Maryland 2012 - Patient Engagement Best Practices Resource Document).
The workshop will convene select teams across various and diverse PCORI-funded projects (Pipeline to Proposals, PCORnet, Eugene Washington PCORI Engagement Awards and the comparative clinical effectiveness research portfolio) as well as other strategically selected individuals or organizations that have demonstrated exemplar “pre-engagement” practices and will work collectively to identify, distill, categorize, and prioritize key factors, promising practices, and principles in the “pre-engagement” phase of research.
Pre-Engagement Workshop Presentation (final)
During this session, we will review PCORI's model of CER and how to frame research questions using this model. We will address issues of study design and how to evaluate the trade-offs among alternative designs. We also will introduce PCORI's Methodology Standards and show how they can be used to improve the quality of clinical research.
Research in Real-World Settings PCORIs Model of Re