This document provides information about the Patient-Centered Outcomes Research Institute's (PCORI) National Patient-Centered Clinical Research Network program, including Patient-Powered Research Networks (PPRNs). PCORI will provide up to $12 million to support the establishment of approximately 18 new or existing PPRNs for 18 months. The goal is to improve the nation's capacity to conduct comparative effectiveness research efficiently by creating a large, representative national patient-centered clinical research network. PPRNs should focus on patient recruitment, data infrastructure development, and network characterization during the funding period.
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11:00 am - 12:00 pm
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Digital Contact Tracing Tools for COVID-19 : Digital contact tracing tools vary in purpose, features, and complexity, but they can add value to traditional contact tracing efforts by:
Johan Vendrig
GM Information Services – healthAlliance
Andrew Terris
Programme Director, Patients First
Darrin Hackett
GM HIQ, Acting CIO Waikato DHB
Martin Wilson
GP, Sexual Health Physician, Clinical Leader
Pegasus, executive NICLG
Tony Cooke
Manager Health Systems Investment and
Planning, Information Group, NHB
(Thursday, 4.15, Panel)
DDG
info@ddg-usa.com
410 962 0505 main
DDG_design twitter
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3700 O’Donnell Street
Baltimore, Maryland
21224 USA
DDG is an internationally renowned planning, architecture, graphics and design company unique in its ability to deliver dynamic, extraordinary solutions to place-making in cities, towns and suburbs all over the world. With a strong history of providing superior expertise in many successful commercial endeavors - notably Istinye Park in Istanbul, Turkey, the award-winning themed movie destinations of Muvico Theaters and the ICSC award-winning Easton Town Center near Columbus, Ohio - the firm’s successful track record is reinforced time and again with numerous awards received for designs that work in the real world. DDG will formulate the highest and best use for property, utilizing of our strongest asset: creative design.
DDG’s vast portfolio includes exciting new retail and entertainment concepts, first-class hotel, leisure, and resort facilities, unique office and residential designs, town/leisure centers and large mixed-use destinations offering a wide range of elements and activities. A host of prestigious domestic and international clients seek DDG’s multi-disciplinary professional services for themed environments, entertainment/retail, regional planning, waterfront development, urban and suburban revitalization, specialty center development, and creative concept generation for land use and project feasibility.
DDG’s multilingual teams create projects from the firm’s Baltimore, Maryland (USA) headquarters, offering extensive experience in virtually every aspect of development. Fluent in over 25 languages, the company’s design specialists command diverse resources to create destinations harmoniously integrated with their surroundings and culturally attuned to the lifestyles of their clients and customers.
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Monday, July 20, 2015
11:00 am - 12:00 pm
Learn more about the technical framework and implementation of sPRL and how your organization can leverage this powerful tool.
Digital Contact Tracing Tools for COVID-19 : Digital contact tracing tools vary in purpose, features, and complexity, but they can add value to traditional contact tracing efforts by:
Johan Vendrig
GM Information Services – healthAlliance
Andrew Terris
Programme Director, Patients First
Darrin Hackett
GM HIQ, Acting CIO Waikato DHB
Martin Wilson
GP, Sexual Health Physician, Clinical Leader
Pegasus, executive NICLG
Tony Cooke
Manager Health Systems Investment and
Planning, Information Group, NHB
(Thursday, 4.15, Panel)
DDG
info@ddg-usa.com
410 962 0505 main
DDG_design twitter
DDG.Traveller facebook
www.ddg-usa.com
3700 O’Donnell Street
Baltimore, Maryland
21224 USA
DDG is an internationally renowned planning, architecture, graphics and design company unique in its ability to deliver dynamic, extraordinary solutions to place-making in cities, towns and suburbs all over the world. With a strong history of providing superior expertise in many successful commercial endeavors - notably Istinye Park in Istanbul, Turkey, the award-winning themed movie destinations of Muvico Theaters and the ICSC award-winning Easton Town Center near Columbus, Ohio - the firm’s successful track record is reinforced time and again with numerous awards received for designs that work in the real world. DDG will formulate the highest and best use for property, utilizing of our strongest asset: creative design.
DDG’s vast portfolio includes exciting new retail and entertainment concepts, first-class hotel, leisure, and resort facilities, unique office and residential designs, town/leisure centers and large mixed-use destinations offering a wide range of elements and activities. A host of prestigious domestic and international clients seek DDG’s multi-disciplinary professional services for themed environments, entertainment/retail, regional planning, waterfront development, urban and suburban revitalization, specialty center development, and creative concept generation for land use and project feasibility.
DDG’s multilingual teams create projects from the firm’s Baltimore, Maryland (USA) headquarters, offering extensive experience in virtually every aspect of development. Fluent in over 25 languages, the company’s design specialists command diverse resources to create destinations harmoniously integrated with their surroundings and culturally attuned to the lifestyles of their clients and customers.
DDG’s novel ability to integrate multiple disciplines has found dramatic expression in celebrated hubs of activity everywhere - truly memorable places where ideas and commerce, dreams and lifestyles converge in new and sensational ways.
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.
HIMSS15: Trust in Regional Exchange Supports Patient-Centered ResearchIBM Analytics
Thomas F. Check, MA, and Lorraine M. Fernandes, RHIA, gave this presentation at HIMSS15. Inside you will find info on a number of learning objectives including:
1.Explain how HIE patient-matching technology supports the innovative research infrastructure of NYC-CDRN.
2.Identify privacy issues addressed by HIE participants including how the NYC-CDRN infrastructure supports patient privacy.
3.Describe how consumer, patient consent and other concerns of community stakeholders are addressed.
4.Discuss the value of re-using data from Healthix and the Bronx RHIO including costs and technology infrastructure.
5.Illustrate the information data model’s use within NYC-CDRN and its connection to the PCORnet.
Follow @IBM Healthcare on Twitter: https://twitter.com/IBMHealthcare
January 23, 2017
The Fifth Annual Health Law Year in P/Review symposium featured leading experts discussing major developments during 2016 and what to watch out for in 2017. The discussion at this day-long event covered hot topics in such areas as health policy under the new administration, regulatory issues in clinical research, law at the end-of-life, patient rights and advocacy, pharmaceutical policy, reproductive health, and public health law.
The Fifth Annual Health Law Year in P/Review was sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, Harvard Health Publications at Harvard Medical School, Health Affairs, the Hastings Center, the Program On Regulation, Therapeutics, And Law (PORTAL) in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, and the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund.
Learn more on our website: http://petrieflom.law.harvard.edu/events/details/5th-annual-health-law-year-in-p-review
Understanding clinical data exchange and cda (hl7 201)Edifecs Inc
On top of simple needs for doctors to be connected and be able to efficiently exchange information, there is a lot of external factors driving standardization of information exchange from market to various government initiatives and as the industry moves toward a population health model, there is more need for wider applicability of standards. This Slide share covers an introduction to CDA and establishes the importance of clinical documentation for claims and prior authorization attachments
The FMBHP is a collaboration among frontier/rural healthcare communities; Mineral Community Hospital’s Interdisciplinary Medical Education Center; iVantage, an industry leader providing comprehensive hospital evaluation tools; Mayo Clinic’s Practice-Based Research Network (PBRN); and the Appalachian Osteopathic Postgraduate Training Institute Consortium (A-OPTIC). The FMBHP will partner with CMS, IHS, Veteran Administration and other private insurers to develop a seamless and sustainable model of patient-centered and community-based healthcare that produces better outcomes cost-effectively.
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 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.
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Local Advanced Lung Cancer: Artificial Intelligence, Synergetics, Complex Sys...Oleg Kshivets
Overall life span (LS) was 1671.7±1721.6 days and cumulative 5YS reached 62.4%, 10 years – 50.4%, 20 years – 44.6%. 94 LCP lived more than 5 years without cancer (LS=2958.6±1723.6 days), 22 – more than 10 years (LS=5571±1841.8 days). 67 LCP died because of LC (LS=471.9±344 days). AT significantly improved 5YS (68% vs. 53.7%) (P=0.028 by log-rank test). Cox modeling displayed that 5YS of LCP significantly depended on: N0-N12, T3-4, blood cell circuit, cell ratio factors (ratio between cancer cells-CC and blood cells subpopulations), LC cell dynamics, recalcification time, heparin tolerance, prothrombin index, protein, AT, procedure type (P=0.000-0.031). Neural networks, genetic algorithm selection and bootstrap simulation revealed relationships between 5YS and N0-12 (rank=1), thrombocytes/CC (rank=2), segmented neutrophils/CC (3), eosinophils/CC (4), erythrocytes/CC (5), healthy cells/CC (6), lymphocytes/CC (7), stick neutrophils/CC (8), leucocytes/CC (9), monocytes/CC (10). Correct prediction of 5YS was 100% by neural networks computing (error=0.000; area under ROC curve=1.0).
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Title: Sense of Taste
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the structure and function of taste buds.
Describe the relationship between the taste threshold and taste index of common substances.
Explain the chemical basis and signal transduction of taste perception for each type of primary taste sensation.
Recognize different abnormalities of taste perception and their causes.
Key Topics:
Significance of Taste Sensation:
Differentiation between pleasant and harmful food
Influence on behavior
Selection of food based on metabolic needs
Receptors of Taste:
Taste buds on the tongue
Influence of sense of smell, texture of food, and pain stimulation (e.g., by pepper)
Primary and Secondary Taste Sensations:
Primary taste sensations: Sweet, Sour, Salty, Bitter, Umami
Chemical basis and signal transduction mechanisms for each taste
Taste Threshold and Index:
Taste threshold values for Sweet (sucrose), Salty (NaCl), Sour (HCl), and Bitter (Quinine)
Taste index relationship: Inversely proportional to taste threshold
Taste Blindness:
Inability to taste certain substances, particularly thiourea compounds
Example: Phenylthiocarbamide
Structure and Function of Taste Buds:
Composition: Epithelial cells, Sustentacular/Supporting cells, Taste cells, Basal cells
Features: Taste pores, Taste hairs/microvilli, and Taste nerve fibers
Location of Taste Buds:
Found in papillae of the tongue (Fungiform, Circumvallate, Foliate)
Also present on the palate, tonsillar pillars, epiglottis, and proximal esophagus
Mechanism of Taste Stimulation:
Interaction of taste substances with receptors on microvilli
Signal transduction pathways for Umami, Sweet, Bitter, Sour, and Salty tastes
Taste Sensitivity and Adaptation:
Decrease in sensitivity with age
Rapid adaptation of taste sensation
Role of Saliva in Taste:
Dissolution of tastants to reach receptors
Washing away the stimulus
Taste Preferences and Aversions:
Mechanisms behind taste preference and aversion
Influence of receptors and neural pathways
Impact of Sensory Nerve Damage:
Degeneration of taste buds if the sensory nerve fiber is cut
Abnormalities of Taste Detection:
Conditions: Ageusia, Hypogeusia, Dysgeusia (parageusia)
Causes: Nerve damage, neurological disorders, infections, poor oral hygiene, adverse drug effects, deficiencies, aging, tobacco use, altered neurotransmitter levels
Neurotransmitters and Taste Threshold:
Effects of serotonin (5-HT) and norepinephrine (NE) on taste sensitivity
Supertasters:
25% of the population with heightened sensitivity to taste, especially bitterness
Increased number of fungiform papillae
- Video recording of this lecture in English language: https://youtu.be/kqbnxVAZs-0
- Video recording of this lecture in Arabic language: https://youtu.be/SINlygW1Mpc
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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.
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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.
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Stay informed, stay safe, and get your flu shot today!
The National Patient-Centered Clinical Research Network: Patient-Powered Research Networks (PPRN)
1. The National Patient-Centered Clinical Research Network:
Patient-Powered Research Networks (PPRN)
Building a National Data Infrastructure to Advance Patient-
Centered Comparative Effectiveness Research (CER)
Town Hall for Applicants: June 2013
1
2. Agenda
Introductions
About PCORI: Mission and Vision
Overview of National Patient-Centered
Clinical Research Network
Ideal PPRN Characteristics
Letter of Intent (LOI) Requirements
LOI Review Criteria
Administrative Matters
Resources
Live Q&A
Submitting Questions:
Submit questions via the chat
function in Meeting Bridge
Ask a question via phone (an
operator will standby to take
your questions)
2
3. Introductions
Joe Selby, MD, MPH
Executive Director
Bryan Luce, PhD, MBA
Chief Science Officer
Rachael Fleurence, PhD
Acting Program Director
James Hulbert
Contracts Administrator
Martin Duenas, MPA
Contracts Director
Martin Brown, PhD
Sr. Scientific Advisor
5. PCORI’s Mission and Vision
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit health
research organization authorized by the Patient Protection and Affordable Care Act of 2010.
PCORI funds patient-centered research to assist patients, caregivers, and other stakeholders in
making informed health decisions.
Mission
PCORI helps people make
informed healthcare
decisions and improves
healthcare delivery and
outcomes by producing and
promoting high integrity,
evidence-based information
that comes from research
guided by patients,
caregivers, and the broader
healthcare community.
Vision
Patients and the public have
the information they need to
make decisions that reflect
their desired health
outcomes.
5
6. PCORI’s National Priorities
PCORI’s funding cycles focus on its National Priorities, which were put forth in PCORI’s authorizing
legislation.
These five broad areas comprise PCORI’s National Priorities for Research and encompass the patient-
centered comparative clinical effectiveness research PCORI will support.
Assessment of
Prevention,
Diagnosis, and
Treatment
Options
Improving
Healthcare
Systems
Communication
and
Dissemination
Addressing
Disparities
Accelerating
Patient-
Centered
Outcomes
Research and
Methodological
Research
8. National Patient-Centered Clinical Research
Network
The goal of PCORI’s National Patient-Centered Clinical Research Network
Program is to improve the nation’s capacity to conduct CER efficiently, by
creating a large, highly representative, national patient-centered clinical
research network for conducting clinical outcomes research.
The vision is to support a learning US healthcare system, which would allow
for large-scale research to be conducted with enhanced accuracy and
efficiency.
9. National Patient-Centered Clinical Research
Network
The core components of this network will be:
Clinical Data Research Networks (CDRNs), which are system-based
networks (such as hospital systems) that have the potential to become
an ideal electronic network, without structural impediments.
Patient-Powered Research Networks (PPRNs), which are groups of
patients interested in forming a research network and in participating
in research.
A Coordinating Center which will provide technical and logistical
assistance under the direction of the Steering Committee and PCORI
Staff.
Specifically, this program will promote:
A more comprehensive, complete, longitudinal data infrastructure.
Broader participation of patients, clinicians, health systems, and payers
in the research process.
Improvements in analytic methods for both observational and
experimental CER.
10. 10
National Patient-Centered Clinical
Research Network: Our Vision
Steering Committee
- Awardees
- PCORI
- AHRQ, NIH,
FDA, ONC, CMS
Scientific
Advisory Board
Special Expert
Group
Coordinating Center Staff
12. 12
Ideal PPRN Characteristics: Patients
Is comprised of patients linked by a common condition,
may also include interested caregivers or clinicians, and
is enthusiastic about participating in research.
Is interested in and willing to increase the amount of
information collected (suitable for research) from an
activated patient community of at least 50,000 patients
(less for patients with rare disorders).
Is willing to explore new approaches for patient members to contribute their
electronic clinical data to the PPRN (e.g. use of Blue Button technology).
Is willing to explore new approaches for patient members to collect self-reported
data.
13. 13
Ideal PPRN Characteristics: Systems
Is willing to participate in a program-wide Steering
Committee to help resolve network- wide challenges
Is willing to collaborate with other awardees, with
the aim of:
converging on a standards-based, inter-
operable approach to building patient-powered
networks
merging in a subsequent funding cycle, with
clinical research data networks
14. 14
Ideal PPRN Characteristics: Administrative
Has a governance structure and operating policies
that ensure patient control, and can establish
relationships with qualified researchers.
Can accumulate relevant clinical and patient-
reported outcomes data from a high proportion (at
least 80%) of the membership.
Is interested in being actively involved in planning
and conducting dissemination of research findings
to patients and providers.
Has strategies to enhance and report the diversity and the representativeness of the
patient community as it expands.
15. 15
PPRNs Should Concentrate on the Following
Activities During the 18 months Initiative
Patient recruitment to their network.
Establishment of standards-based data infrastructure
and policies to support these efforts.
Characterization of the network membership in terms
of demographic and clinical characteristics.
Refining the process for identifying research needs of
greatest interest to patients.
Collection of clinical data from providers leveraging the View, Download, Transmit
(VDT) requirements of Meaningful Use and other Blue Button efforts.
Collection of patient generated information, including patient reported outcomes
information.
18. Studies PCORI Is Not Soliciting Under This
PFA
18
Under this PFA, PCORI is not intent on providing maintenance funds to
support existing work of current networks. Rather, we are looking to
transformational work that will move us toward the goal of the national
network.
Reminder: Please refer to the PFA for a detailed description of what PCORI is seeking through this
PFA.
20. Understanding the Letter of Intent (LOI)
A LOI is required in order to submit an application.
LOIs will be reviewed and approved.
Applicants will receive an invitation to submit an application after
submitting a LOI.
An Investigator can only be listed as a PI on one LOI.
A organization may be a participant in no more than two applications.
Of note: PCORI encourages applicants to submit their LOI and application before
the stated due date. LOIs and applications are due 5:00 pm EST.
20
21. 21
The PPRN LOI should address the
following:
Project/network plan: Describe the network’s origin, mission, and
current size and:
Capacity of the network to grow during the 18-month period.
All current partnerships and/or plans to partner with other
organizations during the 18-month funding period.
Capacity and willingness to link and collaborate with other
networks.
Readiness to adequately perform on each of the ideal features of
the PPRN
Personnel: Briefly state the qualifications of the PI and key
personnel to perform the described project.
Patient engagement: a brief description of the items of concern and relevance to patients
(governance, privacy etc.) and of the capacity of the network to support patient-centered
outcomes research.
Impact and relevance to patients and PCOR: a brief description of how the network will
contribute to PCORI’s overall goal of establishment of a unified national patient-centered
clinical research network for future PCOR studies.
22. 22
The PPRN LOI should address the
following: (additional information)
LOI supporting documentation: :
References Cited (one-page limit).
List of Abbreviations, Acronyms, and Symbols (two-page
limit).
Biographical Sketch of the Principal Investigator(s) (four-
page limit per individual).
Notes:
The LOI 4-page limit applies to text and any figures, tables, graphs,
photographs, diagrams, pictures, pictorials, and cartoons.
URLs included providing additional information to expand the LOI will not be
reviewed.
This limit excludes the LOI supporting documentation.
24. PPRN LOI Review Criteria
24
The LOI will be evaluated internally by PCORI based
on the project/network plan and on patient
engagement and personnel.
LOIs will be reviewed based on fit of the applicant
network with the goals of the Cooperative Agreement
and feasibility to complete work within the budget
and project period proposed.
26. Funds, Budget and Period Limitations
26
Note: This is one-time announcement. It will not be reissued.
Funds & Budget
Funds available: up to $12 Million
Cooperative Agreement: up to 18
Maximum $1,000,000 total costs per year
Indirect costs: up to 40%
Request for exceptions can be made during the LOI
submission
Period of Performance
Maximum of 18 months
There are no exceptions. You can not request a longer
period to complete this project
27. Eligibility Requirements
Applications may be submitted by:
Any private sector research organization, including any:
• non-profit organization
• for-profit organization
Any public sector research organization, including any:
• university or college
• hospital or healthcare system
• Laboratory or manufacture
• unit of state or local government
Only US-based organizations may apply as primary institutions
Nondomestic Components of Organizations based in the United States
Please Note: Individuals are not eligible to submit applications to PCORI.
27
28. Key Dates: Wednesday, June 19 2013
Key Dates: PCORI Funding Announcement
Action Dates
System Opening Date May 15
Letter of Intent (LOI) Due
Date
Wednesday, June19
Informational Training
Programs
CDRN: Tuesday, June 4th
3:00 PM
PPRN: Thursday, June 6th
3:00 PM
Notification of LOI status Wednesday, July 17
Application Deadline Friday, September 27
Merit Review Dates October - November
Awards Announced December 2013
Earliest Start Date January
28
30. Resources
View training materials through
the Quick Links for Applicants bar.
Access:
Application training
Opportunities for webinars
Reviewer training
Visit the Funding Center for:
PFAs
Templates
Instructions
Key dates
FAQ’s
30
32. Questions
Submitting Questions:Please use this time to ask any question
you may have about the PFA or the LOI
submission process.
If we are unable to address your question
during this time, e-mail the help desk at
pfa@pcori.org.
32
Submit questions via the chat
function in Meeting Bridge
Ask a question via phone (an
operator will standby to take
your questions)