In This Week’s Issue:
1. PIPC Submits Letter to CMS on Rule Regarding Medicare Shared Savings Requirements, see details below.
2. PIPC Chairman Tony Coelho in RealClearHealth: Prioritizing Health Care: Patient or Payer First?, click here to view the op-ed.
3. PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities, click here to view the blog post.
4. Washington Post: Why I hate buying a new wheelchair, click here to read the article.
5. NASEM Health and Medicine: Communicating Clearly About Medicines — Proceedings of a Workshop, click here to read the publication.
6. NHC Webinar: Value Frameworks and Assessment: What do Patient Groups Need to Know? Click here to register.
7. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies, see details below.
8. CMS Measure Development Education and Outreach Series, see details below.
9. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
10. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
11. Lupus: Patient-Focused Drug Development Meeting, click here to register!
12. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
13. Upcoming Events and Webinars, see details below
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below
1. PIPC Submits Letter to CMS on Rule Regarding Medicare Shared Savings Requirements, see details below.
2. PIPC Chairman Tony Coelho in RealClearHealth: Prioritizing Health Care: Patient or Payer First?, click here to view the op-ed.
3. PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities, click here to view the blog post.
4. Washington Post: Why I hate buying a new wheelchair, click here to read the article.
5. NASEM Health and Medicine: Communicating Clearly About Medicines — Proceedings of a Workshop, click here to read the publication.
6. NHC Webinar: Value Frameworks and Assessment: What do Patient Groups Need to Know? Click here to register.
7. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies, see details below.
8. CMS Measure Development Education and Outreach Series, see details below.
9. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
10. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
11. Lupus: Patient-Focused Drug Development Meeting, click here to register!
12. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
13. Upcoming Events and Webinars, see details below
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below
1. PIPC Submits Comments to CMS on Proposed Rule Regarding CY2018 Updates to Quality Payment Program
In a letter to Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma, Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho expressed his concerns about the latest proposal to the Medicare Shared Savings Program to remove the requirement to submit supporting documentation related to patient-centeredness in their applications. "We are concerned that CMS would propose to remove these requirements and accept attestation in their place," said Chairman Coelho. "Although we understand that CMS is attempting to lessen the burden on ACO applicants, we believe that it is imperative that ACOs be held to the highest possible standard for patient-centeredness."
Chairman Coelho also stated that "A further underlying challenge is that CMS has not set forth a clear definition for what it means for an ACO, or any other alternative payment model (APM), to be patient-centered, nor does the agency have an ongoing relationship with patients who are beneficiaries of ACOs to attest to meeting any definition of “patient-centeredness. The rule proposes to abdicate responsibility for enforcing that ACOs actually be patient-centered, instead of proposing a path to defining patient-centeredness in a manner that is understandable and accepted by all stakeholders." Click here to read the letter
Additionally, Chairman Coelho also submitted a letter on behalf of PIPC to CMS, urging a focus on the patient voice when it comes to improving the Quality Payment Program. "Under the proposed rule, it is also important to recognize the reliance on providers to deliver patient-centered care, and to practice in a manner consistent with the measures of success adopted by the program," wrote Chairman Coelho. "Being truly patient-centered will require working closely with providers to ensure that the Quality Payment Program’s complexity does not detract from individualized patient care." Click here to read the letter.
2. PIPC Chairman Tony Coelho in RealClearHealth: Prioritizing Health Care: Patient or Payer First?
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.
3. 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.
4. Washington Post: Why I hate buying a new wheelchair
Ben Mattlin, author of the memoir “Miracle Boy Grows Up,” explains that a one-size-fits-all approach does not work when it comes to purchasing a wheelchair. “Purchasing a wheelchair is not like buying a car or bicycle. Any wheelchair rider will tell you: Rarely do you get to see the chair beforehand, let alone take it for a test drive. You may get a demonstration, but chances are the demo wheelchair won’t be the right size or meet your other particular requirements. Most wheelchairs, at least ones for people such as me, are custom-built. In fact, you don’t really choose your wheelchair so much as have it chosen for you — by physical therapists and sales reps. You can express preferences, of course, or refuse to follow their expert advice. But you’d better have a good reason, and play by the rules, if you want insurance to foot the bill — $15,000 is a steal for high-tech electric-powered models such as mine. After all, what do you know? You’re just the patient.” Click here to read the article.
5. NASEM Health and Medicine: Communicating Clearly About Medicines — Proceedings of a Workshop
The Roundtable on Health Literacy of the National Academies of Sciences, Engineering, and Medicine (NASEM) convened a workshop on communicating clearly about medicines. “The workshop focused on the clarity of written information given to patients and consumers as printed or digital materials. The workshop was organized around presentations and panel discussions that explored the design of health-literate written materials and examples that illustrated implementation of research into the development of these materials. The workshop rapporteurs in brief have prepared this proceedings as a factual summation of the session discussions.” Click here to read the publication.
6. NHC Webinar: Value Frameworks and Assessment: What do Patient Groups Need to Know?
The National Health Council (NHC) is hosting a three-part webinar series on Patient Engagement in Value Assessment. The series will include experts from across the health care community, including patient advocacy organizations, health economics and outcomes researchers, payers, and value framework developers.
Part I: An Overview of Value Frameworks
Part II: An Introduction to Health Economics and Value Assessment
Part III: How the Patient Community Can and Should Be Engaged in the Process
The first webinar will be held September 20 from 3:00 to 4:00 p.m. ET/ 12:00 to 1:00 p.m. PT. Click here to register.
7. 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.
8. 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.
9. 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.
10. 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.
11. 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!
12. 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.
13. Upcoming Events and Webinars
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.
14. 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.
15. 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
