This document summarizes PCORI's efforts to engage patients in research and tool development. It discusses PCORI's priorities in comparative clinical effectiveness research and shared decision making. Examples are provided of pilot projects developing tools like a digital portal for multiple sclerosis patients and integrating patient-reported outcomes into arthritis care. PCORI's vision for a National Patient-Centered Clinical Research Network is outlined, with plans to fund Clinical Data Research Networks and Patient-Powered Research Networks through cooperative agreements.
Digital communications bring opportunity and risk to the therapeutic relationship. Doctors and other health professionals can learn to collaborate in person and online to protect informed decision making. Modified slightly from a talk August 8 2019 at Brigham & Women's Hospital/Dana-Farber Cancer Institute.
PIHCI programmatic grants webinar (en) for circulationAlexandra Enns
These are the slides from CIHR’s webinar providing information for the upcoming PIHCI Network Programmatic Grant funding opportunity.
The complete instructions are on ResearchNet: https://www.researchnet-recherchenet.ca/rnr16/vwOpprtntyDtls.do?prog=2734&view=currentOpps&org=CIHR&type=EXACT&resultCount=25&sort=program&next=1&all=1&masterList=true
Digital communications bring opportunity and risk to the therapeutic relationship. Doctors and other health professionals can learn to collaborate in person and online to protect informed decision making. Modified slightly from a talk August 8 2019 at Brigham & Women's Hospital/Dana-Farber Cancer Institute.
PIHCI programmatic grants webinar (en) for circulationAlexandra Enns
These are the slides from CIHR’s webinar providing information for the upcoming PIHCI Network Programmatic Grant funding opportunity.
The complete instructions are on ResearchNet: https://www.researchnet-recherchenet.ca/rnr16/vwOpprtntyDtls.do?prog=2734&view=currentOpps&org=CIHR&type=EXACT&resultCount=25&sort=program&next=1&all=1&masterList=true
IMS Health Clinical Trial Optimization SolutionsQuintilesIMS
IMS Health's Linda T. Drumright, general manager, Clinical Trial Optimization Solutions presents at the 3rd Annual Patient Recruitment & Retention Summit 2014 - San Francisco, CA
Patient Engagement Presentation - MPN Network Forum April 18, 2017Alexandra Enns
April 18, 2017
In April we held a Network Forum on engaging policymakers and patients/public effectively and appropriately. We would like to give a warm thanks to both Carolyn Shimmin, Patient Engagement expert of CHI's Knowledge Translation team, and Marcia Thomson, Assistant Deputy Minister of Manitoba Health, Seniors and Active Living for their presentations. Below you can see Carolyn's presentation - to see more of her work on patient engagement and to learn more about knowledge translation at CHI, please check out the blog Knowledge Nudge here. If you would like more information, helpful tools or advice about patient/public engagement in research, please contact Carolyn Shimmin at cshimmin@exchange.hsc.mb.ca
Canada’s Rare Disease Drug Program
Vision: Integrated, Inclusive, Innovative Rare Drug System
Single Seamless Pathway from R&D, CT, regulatory approval, access parameters, monitoring, values-based assessment, price negotiations
Governance board representing all stakeholders: diverse patient community, clinical specialities, public/private drug plan providers, HTA agencies, pharmaceutical companies, subject matter experts (regulatory, research)
Building for Success: 12 Steps, 4 Platforms
A presentation showcasing some of the patient recruitment challenges that I encountered as a recruitment manager as well as some of the strategies -- DIGITAL ADVERTISING -- I used to overcome them.
Cihr guest presentation and webinar afternoon talk - january 2014Simon Denegri
Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014
March 02, 2018
Value-based health care is one of the most pressing topics in health care finance and policy today. Value-based payment structures are widely touted as critical to controlling runaway health care costs, but are often difficult for health care entities to incorporate into their existing infrastructures. Because value-based health care initiatives have bipartisan support, it is likely that these programs will continue to play a major role in both the public and private health insurance systems. As such, there is a pressing need to evaluate the implementation of these initiatives thus far and to discuss the direction that American health care financing will take in the coming years.
To explore this important issue, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School collaborated with Ropes & Gray LLP to host a one-day conference on value-based health care. This event brought together scholars, health law practitioners, and health care entities to evaluate the impact of value-based health care on the American health care system.
For more information, visit our website at: http://petrieflom.law.harvard.edu/events/details/will-value-based-care-save-the-health-care-system
IMS Health Clinical Trial Optimization SolutionsQuintilesIMS
IMS Health's Linda T. Drumright, general manager, Clinical Trial Optimization Solutions presents at the 3rd Annual Patient Recruitment & Retention Summit 2014 - San Francisco, CA
Patient Engagement Presentation - MPN Network Forum April 18, 2017Alexandra Enns
April 18, 2017
In April we held a Network Forum on engaging policymakers and patients/public effectively and appropriately. We would like to give a warm thanks to both Carolyn Shimmin, Patient Engagement expert of CHI's Knowledge Translation team, and Marcia Thomson, Assistant Deputy Minister of Manitoba Health, Seniors and Active Living for their presentations. Below you can see Carolyn's presentation - to see more of her work on patient engagement and to learn more about knowledge translation at CHI, please check out the blog Knowledge Nudge here. If you would like more information, helpful tools or advice about patient/public engagement in research, please contact Carolyn Shimmin at cshimmin@exchange.hsc.mb.ca
Canada’s Rare Disease Drug Program
Vision: Integrated, Inclusive, Innovative Rare Drug System
Single Seamless Pathway from R&D, CT, regulatory approval, access parameters, monitoring, values-based assessment, price negotiations
Governance board representing all stakeholders: diverse patient community, clinical specialities, public/private drug plan providers, HTA agencies, pharmaceutical companies, subject matter experts (regulatory, research)
Building for Success: 12 Steps, 4 Platforms
A presentation showcasing some of the patient recruitment challenges that I encountered as a recruitment manager as well as some of the strategies -- DIGITAL ADVERTISING -- I used to overcome them.
Cihr guest presentation and webinar afternoon talk - january 2014Simon Denegri
Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014
March 02, 2018
Value-based health care is one of the most pressing topics in health care finance and policy today. Value-based payment structures are widely touted as critical to controlling runaway health care costs, but are often difficult for health care entities to incorporate into their existing infrastructures. Because value-based health care initiatives have bipartisan support, it is likely that these programs will continue to play a major role in both the public and private health insurance systems. As such, there is a pressing need to evaluate the implementation of these initiatives thus far and to discuss the direction that American health care financing will take in the coming years.
To explore this important issue, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School collaborated with Ropes & Gray LLP to host a one-day conference on value-based health care. This event brought together scholars, health law practitioners, and health care entities to evaluate the impact of value-based health care on the American health care system.
For more information, visit our website at: http://petrieflom.law.harvard.edu/events/details/will-value-based-care-save-the-health-care-system
Overview of the Patient-Centered Outcomes Research Institute (PCORI), how PCORI views Patient-Centered Outcomes Research and how this is related to PCORI’s major funding mechanisms.
Dr. Ostrovsky describes the promise and concerns surrounding the precision medicine initiative and the importance of taking into account all determinants of health.
Romana Hasnain-Wynia: Incorporating the Patient’s Perspective in ResearchNIHACS2015
Romana Hasnain-Wynia, MS, PhD, is the Director of the Addressing Disparities Program at the Patient-Centered Outcomes Research Institute (PCORI). During the conference, she gave a presentation on incorporating the patient’s perspective in research.
Josephine Briggs, MD
Director
National Center for Complementary and Alternative Medicine
National Institutes of Health
Opening Keynote "Research in an IT Connected World: Building Better Partnerships – NIH and Health Care Systems"
The era of ‘Big Data’ has arrived for biomedical research, bringing with it immense challenges as well as spectacular opportunities. NIH is establishing major programs with the potential to transform the future of US biomedical research by building the capacities necessary for these challenges. These programs will strengthen research partnerships with health care systems and the IT networks that support them.
The Big Data to Knowledge (BD2K) initiative, to be launched in 2014, will implement a set of recommendations from the Data and Informatics Working Group to the Advisory Committee to the Director. Investments are planned to meet scientific needs to manage and utilize large complex datasets, including strengthening training, and investing in improved analysis methods and software development and dissemination. NIH is also evaluating strengthening data and software sharing policies, and the potential creation of catalogs of research data, and data/metadata standards.
The Common Fund’s Health Care Systems (HCS) Research Collaboratory program has the goal to strengthen the national capacity to implement cost-effective large-scale research studies by engaging major health care delivery organizations as research partners. The aim of the program is to provide a framework of implementation methods and best practices that will enable the participation of many health care systems in clinical research. Research conducted in partnership with health care systems is essential to strengthen the relevance of research results to health practice. Seven demonstration projects, currently in a feasibility phase, are developing detailed methods to implement rigorous randomized studies of questions of major public health impact. These studies, and the IT infrastructure that will make them possible, will be described in detail.
Slide presentation for the June 4, 2014 joint PCORI/ National Institute on Aging (NIA) of the National Institutes of Health webinar. This webinar announced the selection of the research team that will carry out a major, five-year, $30 million patient-centered study of the effectiveness of individually tailored care plans to help older individuals avoid falls and related injuries.
The slide presentation that preceded of the annual Health Datapalooza in Washington DC, PCORI was pleased to participate in the latest installment in the Health Data Consortium and PricewaterhouseCoopers (PwC) Innovators in Health Data Series, a webinar featuring PCORI Executive Director Joe Selby, MD, MPH; NIH Director and PCORI Board of Governors member Francis Collins, MD, PhD; and Philip Bourne, PhD, NIH’s Associate Director for Data Science.
The slide presentation from PCORI'S Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options April 28-29, 2014 meeting in Alexandria, VA.
The slide presentation from the combined meeting of PCORI'S Advisory Panels on Patient Engagement and Addressing Disparities April 28, 2014 meeting in Alexandria, VA.
Slide presentation from Day Two of the PCORnet Partners meeting. The January 21-2, 2014 meeting took place at the Brookings Institute. This event launched the development of the nation’s most ambitious and promising clinical research network aimed at delivering high quality care through patient-centered outcomes research.
Slide presentation from Day One of the PCORnet Partners meeting. The January 21-2, 2014 meeting took place at the Brookings Institute. This event launched the development of the nation’s most ambitious and promising clinical research network aimed at delivering high quality care through patient-centered outcomes research.
Slide presentation from the October 30, 2013 webinar which described the process and rationale for PCORI’s unique approach to reviewing research proposals for funding.
Slide presentation from the November 13, 2013 webinar. This webinar was an opportunity to learn more about the Tier 1 Pipeline Awards, what type of projects PCORI is looking to fund, and how to apply.
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Ve...kevinkariuki227
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Verified Chapters 1 - 19, Complete Newest Version.pdf
TEST BANK for Operations Management, 14th Edition by William J. Stevenson, Verified Chapters 1 - 19, Complete Newest Version.pdf
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
Tom Selleck Health: A Comprehensive Look at the Iconic Actor’s Wellness Journeygreendigital
Tom Selleck, an enduring figure in Hollywood. has captivated audiences for decades with his rugged charm, iconic moustache. and memorable roles in television and film. From his breakout role as Thomas Magnum in Magnum P.I. to his current portrayal of Frank Reagan in Blue Bloods. Selleck's career has spanned over 50 years. But beyond his professional achievements. fans have often been curious about Tom Selleck Health. especially as he has aged in the public eye.
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Introduction
Many have been interested in Tom Selleck health. not only because of his enduring presence on screen but also because of the challenges. and lifestyle choices he has faced and made over the years. This article delves into the various aspects of Tom Selleck health. exploring his fitness regimen, diet, mental health. and the challenges he has encountered as he ages. We'll look at how he maintains his well-being. the health issues he has faced, and his approach to ageing .
Early Life and Career
Childhood and Athletic Beginnings
Tom Selleck was born on January 29, 1945, in Detroit, Michigan, and grew up in Sherman Oaks, California. From an early age, he was involved in sports, particularly basketball. which played a significant role in his physical development. His athletic pursuits continued into college. where he attended the University of Southern California (USC) on a basketball scholarship. This early involvement in sports laid a strong foundation for his physical health and disciplined lifestyle.
Transition to Acting
Selleck's transition from an athlete to an actor came with its physical demands. His first significant role in "Magnum P.I." required him to perform various stunts and maintain a fit appearance. This role, which he played from 1980 to 1988. necessitated a rigorous fitness routine to meet the show's demands. setting the stage for his long-term commitment to health and wellness.
Fitness Regimen
Workout Routine
Tom Selleck health and fitness regimen has evolved. adapting to his changing roles and age. During his "Magnum, P.I." days. Selleck's workouts were intense and focused on building and maintaining muscle mass. His routine included weightlifting, cardiovascular exercises. and specific training for the stunts he performed on the show.
Selleck adjusted his fitness routine as he aged to suit his body's needs. Today, his workouts focus on maintaining flexibility, strength, and cardiovascular health. He incorporates low-impact exercises such as swimming, walking, and light weightlifting. This balanced approach helps him stay fit without putting undue strain on his joints and muscles.
Importance of Flexibility and Mobility
In recent years, Selleck has emphasized the importance of flexibility and mobility in his fitness regimen. Understanding the natural decline in muscle mass and joint flexibility with age. he includes stretching and yoga in his routine. These practices help prevent injuries, improve posture, and maintain mobilit
Ozempic: Preoperative Management of Patients on GLP-1 Receptor Agonists Saeid Safari
Preoperative Management of Patients on GLP-1 Receptor Agonists like Ozempic and Semiglutide
ASA GUIDELINE
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These simplified slides by Dr. Sidra Arshad present an overview of the non-respiratory functions of the respiratory tract.
Learning objectives:
1. Enlist the non-respiratory functions of the respiratory tract
2. Briefly explain how these functions are carried out
3. Discuss the significance of dead space
4. Differentiate between minute ventilation and alveolar ventilation
5. Describe the cough and sneeze reflexes
Study Resources:
1. Chapter 39, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 34, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 17, Human Physiology by Lauralee Sherwood, 9th edition
4. Non-respiratory functions of the lungs https://academic.oup.com/bjaed/article/13/3/98/278874
Explore natural remedies for syphilis treatment in Singapore. Discover alternative therapies, herbal remedies, and lifestyle changes that may complement conventional treatments. Learn about holistic approaches to managing syphilis symptoms and supporting overall health.
- Video recording of this lecture in English language: https://youtu.be/lK81BzxMqdo
- Video recording of this lecture in Arabic language: https://youtu.be/Ve4P0COk9OI
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
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Pulmonary Thromboembolism - etilogy, types, medical- Surgical and nursing man...VarunMahajani
Disruption of blood supply to lung alveoli due to blockage of one or more pulmonary blood vessels is called as Pulmonary thromboembolism. In this presentation we will discuss its causes, types and its management in depth.
MANAGEMENT OF ATRIOVENTRICULAR CONDUCTION BLOCK.pdfJim Jacob Roy
Cardiac conduction defects can occur due to various causes.
Atrioventricular conduction blocks ( AV blocks ) are classified into 3 types.
This document describes the acute management of AV block.
Couples presenting to the infertility clinic- Do they really have infertility...Sujoy Dasgupta
Dr Sujoy Dasgupta presented the study on "Couples presenting to the infertility clinic- Do they really have infertility? – The unexplored stories of non-consummation" in the 13th Congress of the Asia Pacific Initiative on Reproduction (ASPIRE 2024) at Manila on 24 May, 2024.
Maxilla, Mandible & Hyoid Bone & Clinical Correlations by Dr. RIG.pptx
Engaging Patients in Research and Tool Development
1. Engaging Patients in Research
and Tool Development
Joe V. Selby, MD, MPH, Executive Director
Health Datapalooza IV, June 4, 2013
1
2. Who We Are
! An independent research organization authorized
by Congress as part of the 2010 Patient Protection
and Affordable Care Act.
! We fund comparative clinical effectiveness
research that provides patients and those who care
for them the information they need to make better
informed health care decisions.
2
3. PCORI’s National Priorities
3
• Comparisons of alternative clinical options; identifying patient differences in response to
therapy; studies of patient preferences for various outcomes.
• Improving system support of patient self-management, coordination of care for complex
conditions, access to care; comparing alternative strategies for workforce deployment.
• Understanding and enhancing shared decision-making; alternative strategies for
dissemination of evidence; exploring opportunities to improve patient health literacy.
• Understanding differences in effectiveness across groups; understanding differences in
preferences across groups; reducing disparities through use of findings from PCOR.
• Improving study designs and analytic methods of PCOR; building and improving clinical
data networks.
4. Engagement: A Path To Rigorous, Useful
Research
Advise Us on what PCORI
Should Study:
Tell Us How We Are Doing
Review Proposals and
Partner in Research
Help Us Share the Findings
Patients
and
Stakeholders
• Topic generation
• Research prioritization
Merit review
Participate in research
How can we improve on what we
are doing and how we are doing
it?
Dissemination
5. Our Interest in Data and Tools
! Better Data: Real-world clinical care; patient-
reported information and outcomes.
! Better Infrastructure: For faster collection, more
efficient conduct of studies, and more reliable
implementation in health care delivery.
! Better Decisions: Practical tools that will harness
the evidence to assist patients, their caregivers, and
clinicians in making health care decisions.
5
6. Our Work in Decision-Support/Tool Development
! Shared decision-making, evidence-based decision–
making is central to PCORI strategies for improving
health.
! Many of PCORI’s Pilot Projects involve patients and
clinicians in creating better tools for decision-making,
tailored to specific patient populations.
! A number of our primary research projects also involve
development of shared decision-making tools.
6
7. A BioScreen for Multiple Sclerosis
7
! Primary Investigator and Institution: Stephen Hauser, MD,
University of California at San Francisco
! Pilot Project Award Amount: $599,966
! Description: Seeks to develop an effective and secure digital portal named BioScreen
to access and display real-time clinical and biomarker information for use by patients
and health providers. Focusing on multiple sclerosis, it will target three specific aims:
Integrate multiple dimensions of patient information in a single modular navigation
system, including: clinical evolution of the disease, treatments, environmental
exposures, brain imaging, plus genomic and biomarker data.
Enable the analysis of an individual's clinical course and data within the context of
relevant reference groups, thus creating a transparent platform to quantify clinical
outcomes and disease trajectories.
Facilitate the patient's engagement in disease management and data acquisition.
Featured Project Strengths:
Develops a digital portal that can be extended to the treatment of a
variety of chronic conditions.
Combines the realms of personalized medicine, education, social media
and telemedicine to improve patient care.
Stephen Hauser
8. Integrating Patient-Centered Outcomes in
Arthritis Clinical Care
8
! Primary Investigator and Institution: Clifton O. Bingham, MD,
The Johns Hopkins University (MD)
! Pilot Project Award Amount: $655,944
! Description: Will evaluate the impact of integrating enhanced
patient-centered outcomes into clinical encounters, with rheumatoid arthritis as
a model for chronic diseases. The Patient Reported Outcomes Measurement
Information System (PROMIS) will be implemented to achieve these specific aims:
Evaluate the integration of expanded PCOs using PROMIS into a busy clinical
practice setting.
Estimate the effect of integrating expanded PCOs on patient-care team interactions
and sensitivity to detect change.
Integrate a diverse group of stakeholders through all stages of this research, to
inform study design, increase engagement, disseminate findings, and identify
opportunities for further PCO research priorities in rheumatology and other chronic
diseases.
Featured Project Strength:
Places PROMIS into real-world setting, integrating PCOs into chronic
disease management.
Clifton Bingham
9. Engaging Stakeholders to Improve Depression
Management in a Tribal Health System
9
! Primary Investigator and Institution: Renee Robinson, PharmD,
Southcentral Foundation (AK)
! Pilot Project Award Amount: $604,301
! Description: Will develop, test, and refine a tool to support decision making
within a tribally-owned health care organization, using depression as example
condition. There are three specific aims:
Identify stakeholder preferences and needs that influence depression treatment
decisions in Alaska Native and American Indian people.
Develop a tool to help translate and integrate evidence-based guidelines, and
stakeholder preferences and needs into depression management decisions.
Determine impact of the stakeholder-centered tool on health, service utilization, and
outcomes.
Featured Project Strengths:
Studies an issue with high prevalence in an underserved community.
The results will be applicable to other chronic health concerns, and other
racially and ethnically diverse populations with persistent health
disparities.
Renee Robinson
10. Our “Big Data” Idea: Making This Vision Real
! We’ve proposed development of a National Patient-
Centered Clinical Research Network
Two funding announcements for up to $68 million.
• Clinical Data Research Networks (CDRNs).
• Patient-Powered Research Networks (PPRNs).
! Key Dates:
April 23: Funding Announcements Released.
June 19: Letters of Intent (LOI) Due.
September 27: Applications Due.
December: Awards Announced.
10
11. What Would Such a Network Look Like?
Characteristics:
! A “network of networks.”
! Two types of component networks:
systems-generated and patient
driven networks.
! Active involvement of health care
systems, clinicians, and patients.
! A commitment to establishing inter-
operability and data sharing across
networks and ready collaboration
with the larger research
community.
Capabilities:
! Rich clinical data from electronic
health records and other data sources
stored in standardized, interoperable
formats.
! Capacity to conduct both
observational studies and randomized
trials embedded in clinical settings.
! Rigorous practices for data security
and confidentiality.
! Appropriate IRB and human subjects
oversight.
! Utility for CER, safety studies,
surveillance, etiologic research, and
potentially for pre-approval trials.
11
12. Ideal Data
Infrastructure
for Patient-
Centered CER
Covers large,
diverse,
defined
populations
from usual
care settings
Allows for
complete capture
of longitudinal
data
Capacity for
collecting patient
reported outcomes
Active patient
and clinician
engagement in
governance of
data use
Is efficient in
terms of costs
for data
acquisition,
storage, analysis
Linkages to health
systems for rapid
dissemination
of findings
Capable of
randomization—
at individual and
cluster levels
What the Ideal Data Network Will Do
14. National Patient-Centered Clinical
Research Network: Our Vision
14
Patient Organizations
Coordinating Center Staff
Steering
Committee
- Awardees
- PCORI
- AHRQ, NIH,
FDA, ONC,
CMS, VA
Scientific
Advisory
Board
Special
Expert Group
15. Patient-Powered Research Networks (PPRNs)
! $12 million to support up to 18 new or existing
PPRNs for 18 months.
15
COOPERATIVE AGREEMENT AWARD
• Target size of 0.5% of U.S population
with condition: (> 50 patients for rarest
diseases; 10,000 for most common).
• Patient-reported data collected for at
least 80% of cohort.
• Patients involved in governance.
• Standardized data suitable for sharing
with other infrastructure members.
• Patients with a single condition,
interested in research participation.
• Ability to increase size and diversity of
patient membership.
• Willingness to build standardized
database of patient-reported data.
• Willingness to explore collection of
electronic clinical data.
18 MONTHS LATER
16. Clinical Data Research Networks (CDRNs)
16
! $56 million to support up to 8 new or existing CDRNs
for 18 months.
COOPERATIVE AGREEEMENT AWARD 18 MONTHS LATER
• At least two health care systems
engaged.
• Willingness and capacity to work toward
data standardization with other awardees.
• Willingness to participate in collaborative
studies with data sharing as part of a
national research infrastructure.
• > 1,000,000 patients enrolled.
• Data standardized within network and
with other awardee networks.
• Patients, system, and clinicians
engaged in governance & use.
• Capable of implementing clinical trials.
17. Potential Participants, Partners, Data Sources
17
Patient
Organizations Medical Groups
Disease
Registries
Health Plans
Practice Based
Research
Networks
Integrated
Delivery
Systems
CMS
Medical
Centers
State/County
Health Systems