1. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
2. PCORI Video: Hearing the Patient Voice and Improving Care, click here to watch the video.
3. AJMC: From “Magic Bullets” to Precision Medicine—Ensuring More Patient-Centered Cancer Care, see details below
4. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
5. Patient Input Needed! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
6. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
7. Lupus: Patient-Focused Drug Development Meeting, click here to register!
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
9. Upcoming Events and Webinars, see details below
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
On Friday, September 22, UCP will host a day-long workshop in Washington, DC to engage and educate advocates on the Patient-Centered approach and self-advocacy when it comes to the desires and needs of individuals with disabilities in the health care and health research spaces. The event will be held from 8:30 am to 4:30 pm at The National Youth Transitions Center. Click here to RSVP.
2. PCORI Video: Hearing the Patient Voice and Improving Care.
Kari Gali, a Pediatric Nurse Practitioner from the Cleveland Clinic, shares how PCORI is providing patients and their families with hope, a voice, and a vision for health care. “When I became familiar with PCORI, I learned that there was a large group. There was hope, there was numbers, and there was some funding behind making care better and really hearing the patients voice and having care being tailored to them. We can look, as providers, at what the evidence shows to improve outcomes, but that’s not necessarily what the patient needs or wants.” Click here to watch the video.
3. AJMC: From “Magic Bullets” to Precision Medicine—Ensuring More Patient-Centered Cancer Care
Dr. Joseph Alvarnas notes in The American Journal of Managed Care that as we shift to the precision-medicine model of cancer care, it is essential to develop a scalable system that can deliver these care solutions in a patient-centered, economically sustainable way “...Inasmuch as the opportunities presented by the "precision medicine" paradigm are countless, the challenges posed to our patients and our healthcare delivery system, by this paradigm shift, are numerous. How can patients effectively grasp their healthcare choices when the pace of innovation creates changes in the standard of care at a rate nearly impossible to process? Click here to read the article.
AMJC also released a new video featuring Dr. Ilene Hollin, who notes that value assessment frameworks should represent a spectrum of patient preferences. “In the next generation of value assessment frameworks, we need to make sure that they account for patient preferences in a way that the patient and the physician can understand what is the value of a therapy given the patients specific set of preferences.” Click here to watch the video.
4. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation
The Centers for Medicare & Medicaid Services, Center for Medicare & Medicaid Innovation (CMMI) will be hosting a one-day Summit on Friday, September 8, 2017 to be held at CMS Headquarters in Baltimore. “The purpose of the Summit is to discuss ideas for a potential behavioral health model to improve access, quality, and cost of care for beneficiaries with behavioral health conditions. Community health organizations, providers, patient advocacy groups, caregivers, non-Federal organizations, and other interested parties are invited to participate in this forum to present recommendations for payment or care delivery of behavioral health services and share experiences of delivering behavioral health services. The opinions and alternatives provided during this meeting will assist us as we explore the possibility of developing a model to address behavioral health payment and care delivery. The meeting is open to the public, but attendance is limited to the availability of space.” Click here to register.
5. Patient Input Needed! CMS Rule on CY 2018 Updates to the Quality Payment Program
CMS is now accepting comments on a new rule that provides proposed updates for the second and future years of the Quality Payment Program. “The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) established the Quality Payment Program for eligible clinicians. Under the Quality Payment Program, eligible clinicians can participate via one of two tracks: Advanced Alternative Payment Models (APMs); or the Merit-based Incentive Payment System (MIPS). We began implementing the Quality Payment Program through rulemaking for calendar year (CY) 2017.” Click here for details.
6. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions?
The Improving Hospital Outcomes through Patient Engagement (iHOPE) Steering Committee needs participants for a survey that will help research teams learn the questions that patients, families, caregivers, and other healthcare stakeholders want answered. “Are you a healthcare provider or a member of a healthcare-related organization? Are there any uncertainties about patient care during and after the hospital stay, or areas where you feel there should be more evidence to guide care? This could include any aspect of care - treatments, processes, decision-making, discharge planning, etc. “ Click here to complete the survey.
7. Lupus: Patient-Focused Drug Development Meeting
On September 25, 2017, 10:00 am - 4:00 pm at the College Park Marriott Hotel & Conference Center, three lupus organizations will hold a Patient-Focused Drug Development meeting to advance their understanding of the lupus patient perspective. The goal of the Lupus PFDD Meeting is to inform how FDA officials – particularly those reviewing potential new treatments for lupus – think about this disease. We want agency officials to know what it is like to live with lupus day-in and day-out, how the disease impacts your daily life, what benefits you expect in future treatments and what level of risk you may be willing to accept in exchange for these benefits. Following the meeting, the organizers will write a report summarizing the survey results and the meeting, calling out the most important points and perspectives. This document will be conveyed to the FDA, pharmaceutical developers and researchers to ensure they know how lupus impacts people and families, what our community values most and what we want to see in new treatments. Click here to register!
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability
The American Association on Health and Disability’s Frederick J. Krause Scholarship on Health and Disability is currently accepting applications. The scholarship honors Frederick J. Krause, a lifelong advocate for those with disabilities who passed away in 2014. Beginning with his role as a special education teacher, Mr. Krause’s distinguished career in advocacy included service in the federal government and the cofounding of the American Association on Health and Disability. The scholarship pays tribute to Mr. Krause by awarding scholarships to students with disabilities that are pursuing an education on disability-related topics. Click here to apply.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting
August 15, 2017
Click here for details.
Partnerships to Conduct Research within PCORnet (PaCR) Applicant Town Hall - Cycle 2 2017
August 23, 2017
Click here for details.
Infrastructure PPRN Off-Cycle LOI Submission Webinar
August 28, 2017
Click here for details.
PCORnet Best Practice Sharing Session: Stakeholder Contributions to Scientific Manuscripts and A Web-Based Platform for Engaging and Connecting Patients & Caregivers
August 29, 2017
Click here for details.
Research!America's 2017 National Health Research Forum
September 7, 2017
Click here for details.
Public Workshop: A Framework for Regulatory Use of Real-World Evidence
September 13, 2017
Click here for details.
Lupus Patient-Focused Drug Development (PFDD) Meeting
September 25, 2017
Click here for details.
Introduction to HEOR: Principles and Practice in Health Care Decision Making
October 5-8
Click here for details.
Virtual Summit: High-Deductible Health Plans, They’re Here to Stay, so How Can Employers Enhance the Experience?
October 12, 2017
Click here for details.
Dissemination & Implementation Applicant Town Hall - Cycle 3 2017
October 13, 2017
Click here for details.
ASHRM 2017 Conference and Exhibition
October 15-18
Click here for details.
NPC @ AMCP Nexus 2017 and AMCP Foundation Research Symposium
October 16, 2017
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
10. Medical Journal Articles
ICER's Revised Value Assessment Framework for 2017–2019:A Critique, click here to view.
Drugs Cleared Through The FDA's Expedited Review Offer Greater Gains Than Drugs Approved By Conventional Process, click here to view.
PHEDRA: Using Real-World Data to Analyze Treatment Patterns and Ibrutinib Effectiveness in Hematological Malignancies, click here to view.
Nonclinical Factors Affecting Shared Decision Making, click here to view.
The Importance of Model Inputs and Assumptions in Conducting Health Technology Assessments of Novel Drugs, click here to view.
From Evidence Based Medicine to Medicine Based Evidence, click here to view.
Depression, Anxiety and Stress Severities in Multiple Sclerosis Patients Using Injectable Versus Oral Treatments, click here to view.
Comparative Effectiveness of Surgery Versus Antibiotics in Acute Appendicitis: A Systematic Review Stephanie D Talutis and Frederick Thurston Drake, click here to view.
Patient-Reported Outcomes in Hematology: Is It Time to Focus More on Them in Clinical Trials and Hematology Practice? Click here to view.
Discrete Event Simulation-Based Resource Modelling in Health Technology Assessment, click here to view.
Patient Preferences: A Trojan Horse for Evidence-Based Medicine? Click here to view.
Patient-Reported Outcomes — Are They Living Up to Their Potential? Click here to view.
The Mediatory Role of Medication Adherence in Improving Patients' Medication Experience Through Patient–Physician Communication among Older Hypertensive Patients, click here to view.
Comparative Effectiveness: 18F-FDG-PET/CT versus CT for Post-Treatment Follow-Up of Patients with Lung Cancer, click here to view.
11. AHRQ Effective Program Updates
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
Stroke Prevention in Atrial Fibrillation Patients: A Systematic Review Update, click here to view.
Venous Thromboembolism Prophylaxis in Major Orthopedic Surgery: Systematic Review Update, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update -- Research Protocol, click here to view.
Drug Therapy for Early Rheumatoid Arthritis in Adults – An Update -- Research Protocol, click here to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
Tympanostomy Tubes in Children with Otitis Media -- Final Report, click here to view
Treatment of Osteoarthritis of the Knee: An Update Review -- Final Report, click here to view.
Assessment Tools for Palliative Care -- Final Report, click here to view.
Noninvasive, Nonpharmacological Treatment for Chronic Pain, click here to view.
The Role of Immunotherapy in the Treatment of Asthma, click here to view