1. PIPC Chairman Tony Coelho in RealClearHealth: Prioritizing Health Care: Patient or Payer First?, click here to view the op-ed.
2. PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities, click here to view the blog post.
3. Washington Post: My Son Has Autism. Discrimination Almost Cost Him His Life, click here to view the article
4. NQF: Measuring What Matters to Patients: Integrating the Patient Experience into Quality Measures, click here to watch the webinar.
5. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies, see details below.
6. CMS Measure Development Education and Outreach Series, see details below.
7. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
8. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
9. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
10. Lupus: Patient-Focused Drug Development Meeting, click here to register!
11. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
12. Upcoming Events and Webinars, see details below
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
In an op-ed published today in RealClearHealth, PIPC Chairman Tony Coelho examines the limitations of quality-adjusted-life-years (QALYs) and how these tools for value-assessment may systematically discriminate against patients and individuals with disabilities. As he writes, "Underlying all this is the key question we must ask ourselves when considering any policy related to the payment and delivery of health care: for whom are we creating this policy? Who is the ultimate stakeholder? If the answer is not the people served by health systems -- patients and people with disabilities -- then we have a serious problem."
As Chairman Coelho explains, "QALYs have significant methodological limitations known to disadvantage people with disabilities and serious chronic conditions for whom 'optimal health' may not be achieved even with treatment, a fact widely recognized by patients, policymakers, and even health economists.... Despite deep-seated concerns, research based on QALYs serves as the foundation for insurance coverage decisions, both public and private. Academics, like those employed by the Institute for Clinical Effectiveness Review (ICER), use QALYs to determine whether the extra dollar on health care spent is worth it. Insurers and policymakers use QALYs to determine whether we are worth it.” With regard to the Veterans Administration (VA), he explains that use of QALYs "further entrenches the VA’s coverage decisions based on what is cost effective to the payer in the short term, not what is clinically effective for veterans in the long term.” Click here to view the op-ed.
2. PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities
Janni Lehrer-Stein, a disability rights advocate appointed by President Obama to serve two terms on the National Council on Disability, writes in a new PIPC Patient Blog that patients and policymakers must “work together to ensure that the tremendous potential of new treatments comes to fruition.” She recently learned about an upcoming study by the Institute for Clinical Effectiveness Review (ICER) related to a gene therapy for vision loss associated with a form of retinal disease, a cure for blindness. While she learned about the study after closure of the initial comment period, she shares her perspective about this new treatment and its potential. Janni currently serves as a member of the Board of Directors of the Foundation Fighting Blindness, Disability Rights Advocates and as a member of the National Academies on Science, Engineering and Medicine on its Forum on Aging and Disability.
As she writes, “I was amazed to learn that one of the organizations I serve as a national Board member, the Foundation Fighting Blindness, is making great headway in its search for treatments and cures for retinal degenerative disease. In an almost unbelievable development, the Foundation has sponsored research that, with non-surgical treatment by means of gene therapy, may restore and retain sight for patients who are affected by a form of retinal degeneration called LCA... In my three decades as a disability advocate, I have often witnessed and experienced the discrimination that may result from assumptions made as to access, capability or benefits of application. I have often fought against the stigma that is attached to disability, or those who are quick to judge that a disabled person’s life is not worthy of attention, inclusion or respect. I find it impossible to believe that the value of this treatment, to restore and retain vision for children who are just beginning their life’s journey, can be discounted or minimized. I encourage ICER, and the broader community of health care insurers, providers and physicians to do everything in their power to ensure that this treatment takes hold, is made available and at reasonable cost that will do so much to benefit young lives.” Click here to view the blog post.
3. Washington Post: My Son Has Autism. Discrimination Almost Cost Him His Life.
In a compelling op-ed published in the Washington Post, disability rights advocate Sunshine Bodey discusses how discrimination against individuals with disabilities nearly prevented her son from receiving a life-saving organ transplant. “Because of our son’s disability, the doctors at our local children’s hospital told us that no facility would perform the transplant, and we should prepare for him to die. A second hospital also refused to consider him. As Lief’s condition swiftly deteriorated, one young physician pleaded Lief’s case to a third transplant hospital, and Lucile Packard Children’s Hospital at Stanford University opened its doors to us… The culmination of his medical journey was receiving a precious gift of life: a human heart. He was likely the first person with severe autism to undergo a heart transplant. Sadly, he’s likely not the first person who has needed one.”
She continued, “While the Americans With Disabilities Act explicitly prevents discrimination in medicine, there is no mechanism for enforcement. This leaves states on the front line of not just ensuring the prevention of the discrimination but also giving families an effective and time-sensitive path of recourse outside of adjudication. Our state, Oregon, in June joined California, New Jersey, Maryland, and Massachusetts in the fight. More states should adopt these policies prohibiting discrimination.” Click here to view the article.
4. NQF: Measuring What Matters to Patients: Integrating the Patient Experience into Quality Measures
On Wednesday, August 30, 2017, NQF hosted a webinar for attendees to learn about new work from the NQF Measure Incubator™ that puts the patient’s voice at the center of quality performance measurement. “NQF and health data sharing and tracking online community PatientsLikeMe® will share results of new research funded by the Robert Wood Johnson Foundation to advance patient-reported outcome performance measurement models using feedback from online communities of thousands of patients. This is the first time that patient feedback on such a large scale has informed measure development and prioritization, marking an important step toward ensuring that measures reflect what is most important to patients.” Click here to watch the webinar.
5. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies
The Patient-Centered Outcomes Research Institute (PCORI) and Anthem are co-hosting a briefing on the need for evidence-based strategies to address America’s opioid epidemic at 3:00 pm on Tuesday, September 19 at the Dirksen Senate Office Building in Washington, D.C. “Guided by patients, caregivers, and other stakeholders, PCORI funds research designed to provide patients, their families, and clinicians with the information needed to make better-informed choices about their healthcare options. The briefing will discuss the importance and need for comparative effectiveness research to support evidence-based practices to address the opioid epidemic. While there are therapeutic alternatives to opioids in managing chronic pain, there is a lack of research on long-term outcomes for these alternatives – as is the case with opioids.” Click here to RSVP.
Additionally, PCORI released a new video featuring Dr. Darpan Patel — a Eugene Washington PCORI Engagement Awardee — who touches on the importance of patient engagement in medical research. “Minorities are highly underrepresented with respect to research, and a majority of the research out there right now is focusing on while males and females. There needs to a higher representation of minorities in clinical research, as well as comparative effectiveness research. So our goal for our conference series was to engage the neuroscientist, as well as the unrepresented minorities to conduct the research together on questions that are important to the patient population.” Click here to watch the video.
6. CMS Measure Development Education and Outreach Series
The Centers for Medicare and Medicaid announced that they are seeking participants for the Measure Development Education and Outreach series, specifically for stakeholders invested in the Quality Payment Program (QPP) quality measurement development. “In partnership with our Measure Management System (MMS) contractor, Battelle, CMS will be hosting a monthly series of educational presentations on the measure development process and related topics that will include the opportunity for open discussion on measure development with CMS and your peer organizations. In addition to these education and outreach sessions, we are also offering groups currently developing QPP quality measures an opportunity to share your proposed measures and measure concepts with CMS through a spotlight series.” Contact [email protected] if you are interested in participating.
7. 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.
8. 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.
9. 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.
10. 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!
11. 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.
12. Upcoming Events and Webinars
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.
13. 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.
14. 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