1. PIPC Patient Blog: Patients are Changing the Conversation about Health Research, click here to read the blog.
2. PIPC Patient Blog: Better Information Means Better-Informed Treatment Choices, click here to read the blog.
3. PCORI Blog: A Clinician's View: Patient-Centered Research Is the Path to Better Health Care, click here to read the blog.
4. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
5. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
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.
In PIPC’s latest Patient Blog, Regina Greer-Smith comments on the benefits of PCORI-funded health research. “PCORI is empowering individuals to be true partners throughout the research process, asking their advice on the research questions to study, requiring they be members of study teams, and seeking their help in evaluating and disseminating study results. PCORI has built trust within the research community and has enabled those who have not been previously included to participate without fear.”
“This is the most important thing we can do to improve research and care: engage, support and address the needs of underserved communities. Regardless of your race or ethnicity, religion, socio-economic status, gender, age, disability, sexual orientation, gender identity or geographic location, you deserve to be heard. The idea is not for patients to replace the expertise of researchers who have produced remarkable advances but to recognize that patients’ voices can enhance studies by providing fresh, timely knowledge about their preferences, lived experiences, and the challenges of addressing complicated health issues every day.” Click here to read the blog.
2. PIPC Patient Blog: Better Information Means Better-Informed Treatment Choices
Donna Cryer comments on one of PCORI’s “boldest” initiatives, the National Patient-Centered Clinical Research Network (PCORnet). “PCORI funded the development of PCORnet as a tool to advance its mission to produce and promote high-quality research guided by patients and the broader healthcare community. PCORI’s Board of Governors saw early on that if we were to truly change the way health research is done, our nation needed the infrastructure to conduct such patient-centered studies faster, more efficiently and less expensively than in the past. That’s what PCORnet is designed to do by harnessing health data captured through electronic health records, insurance claims data, patient-reported outcomes, and other sources, and embedding research in routine clinical care.”
“But PCORI’s Board knew that to truly be transformative, PCORnet had to be a national resource for evidence generation, open to any institution or organization interested in funding studies that used its infrastructure capacity under the unique governance structure and standards that ensures patients are involved in every step of the way. So a group of the PCORI awardees who have built PCORnet developed a plan to do that, overseen by the new People-Centered Research Foundation (PCRF), a private, independent non-profit organization committed to accelerating people-driven research that is faster, more user friendly for patients and providers, and less costly than has been possible to date.” Click here to read the blog.
3. PCORI Blog: A Clinician's View: Patient-Centered Research Is the Path to Better Health Care
David Hahn discusses the difficulty as a patient in making decisions about their care, stressing the importance of patient-centered policies that help patients better understand the decisions they make. “...There's a lot of talk these days about high-value care and paying for treatments based on how well they work. If we want to provide patients the best possible care and reduce unnecessary costs, we need the kind of research PCORI is funding. As individuals, we can't choose wisely if we don't have useful information about the available healthcare options for the conditions we treat.” Click here to read the blog.
4. Register Now! UCP’s Speak for Yourself Workshop
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.
5. 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.
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
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.
Strategies to Prevent Unsafe Opioid Prescribing in Primary Care PFA LOI Town Hall
September 6, 2017
Click here for details.
Webinar: Observational Research: Gathering Evidence in the 21st Century
September 6, 2017
Click here for details.
Research!America's 2017 National Health Research Forum
September 7, 2017
Click here for details.
PCORI Board of Governors Meeting
September 12, 2017
Click here for details.
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Opioid Use Disorder Town Hall
September 13, 2017
Click here for details.
Symptom Management: Post-LOI Applicant Town Hall (MR/CMA)
September 13, 2017
Click here for details.
Understanding The Value Of Innovations In Medicine
September 13, 2017
Click here for details.
Public Workshop: A Framework for Regulatory Use of Real-World Evidence
September 13, 2017
Click here for details.
Addressing America's Opioid Problem: The Need for Evidence-Based Strategies
September 19, 2017
Click here for details.
Patient and Stakeholder Engagement in Research: Making a Difference in PCORI Projects
September 19, 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.
Dissemination & Implementation Applicant Town Hall - Cycle 3 2017
October 12, 2017
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.
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
Cost-Effectiveness of Evolocumab Therapy for Reducing Cardiovascular Events in Patients With Atherosclerotic Cardiovascular Disease, click here to view.
Using Patient-Reported Outcome Measurement to Improve Patient Care, click here to view.
Different Weights of the Evidence-Based Medicine Triad in Regulatory, Health Technology Assessment, and Clinical Decision Making, click here to view.
Addressing the Social Needs of Hypertensive Patients: The Role of Patient–Provider Communication as a Predictor of Medication Adherence, click hereto view.
Comparing Levels of Evidence Between Choosing Wisely and Essential Evidence Plus, click here to view.
Comparative Effectiveness of Enoxaparin Versus Dalteparin for Thromboprophylaxis After Traumatic Injury, 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.
Stakeholders' Views on Data Sharing in Multicenter Studies, click here to view.
Comparative Efficacy and Acceptability of Antidepressants, Psychological Interventions, and Their Combination for Depressive Disorder in Children and Adolescents, click here to view.
Real-World Comparison of Treatment Patterns and Effectiveness of Albiglutide and Liraglutide, click here to view.
Comparison of Patient Report and Medical Records of Comorbidities: Results From a Population-Based Cohort of Patients With Prostate Cancer, click here to view.
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.
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