1. Over 90 Stakeholder Groups to CVS: Don't Discriminate on Care, see details below.
2. Forbes: Will CVS Caremark Make ICER The American NICE? Click here to read the column.
3. Health Affairs: Blogs on CVS Caremark use of QALY Thresholds to Withhold Coverage, see details below.
4. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
5. Don’t Miss a Beat: The Latest on Heart Valve Disease Research and Policy, see details below.
6. Beyond Opioids: Evidence-Based Delivery of Alternative Treatments for Chronic Pain, click here for details.
7. Other Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
8. GHLF: A Patient’s Guide to Insurance Enrollment, click here to view.
9. Medical Xpress: Patient-Centered Visual Aid Helps Physicians Discuss Risks, Treatments With Parents, click here to read the article.
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit, click here to register.
11. 2018 PCORI Annual Meeting, click here for details.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
More than 90 leading stakeholder organizations representing patients, people with disabilities, physicians, and caregivers wrote a letter to CVS Caremark in opposition to a new policy that would discriminate against individuals with disabilities and chronic illnesses.
In August, CVS announced that they would offer new insurance plans that exclude drugs if they exceed a subjective “cost-effectiveness” threshold. CVS would rely on a deeply flawed value assessment model developed by the Institute for Clinical and Economic Review (ICER) in determining whether treatments fall below a $100,000 “cost per quality-adjusted-life-year” limit. This type of cost effectiveness analysis discriminates against people with disabilities and other vulnerable groups like the elderly because it assigns higher value to people in “perfect health” than people in less-than-perfect health. As the letter states, "policy decisions based on cost-effectiveness ignore important differences among patients and instead rely on a single, one-size-fits-all assessment. Further, cost-effectiveness analysis discriminates against the chronically ill, the elderly and people with disabilities, using algorithms that calculate their lives as 'worth less' than people who are younger or non-disabled."
The letter goes on to point out that "CVS Health’s stated purpose is 'helping people on their path to better health.' Reliance on cost-effectiveness thresholds like ICER’s falls short of this purpose, replacing deeply personal, individual health care decisions with an opaque algorithm based on average study results that do not address the needs of different patients and special populations.” Click here to read the letter, and click here to track continuing coverage of our campaign against coverage policies that discriminate against people with disabilities and serious chronic conditions.
2. Forbes: Will CVS Caremark Make ICER The American NICE?
In a column for Forbes, Joshua Cohen criticizes CVS Caremark’s use of the ICER’s QALY metric in its drug coverage practices. CVS Caremark intends to institute a $100,000 per QALY threshold above which it would deny patient access. Specifically, CVS Caremark will “allow clients to exclude any drug launched at a price greater than $100,000 per QALY from their plan.” Additionally, the white paper notes that drugs deemed "breakthrough" therapies by the Food and Drug Administration will be excluded from a cost per QALY assessment. Rather, CVS Caremark says it will focus on "expensive, ‘me-too’ medications that are not cost effective." The latter statement is puzzling because ICER evaluates newly approved drugs, many of which are not "me-too." It's also presumptuous because there are many expensive drugs that are cost-effective. Click here to read the column.
3. Health Affairs: Blogs on CVS Caremark use of QALY Thresholds to Withhold Coverage
Last week, Health Affairs published two competing blogs about CVS Caremark’s decision to offer its employer clients a plan that would limit formularies to drugs under $100,000 per QALY. Unfortunately, there was no perspective included from patients and people with disabilities, despite a recent letter to CVS Caremark opposing use of QALYs from over 90 advocacy organizations. The National Pharmaceutical Council argued that “...CVS assumes that the field of value frameworks is fully mature, has addressed the many limitations of the QALY, and is ready for prime time, which it is not.” CVS Caremark argued, "Quantitative methods, such as the concept of QALY, can help stakeholders compare the costs and effectiveness of medications.” PIPC Chairman Tony Coelho expressed disappointment that perspectives of patients and people with disabilities were not solicited. He responded to the blogs that, “Patients and people with disabilities are going to have to work harder to get a seat at the table.” Click here to view the NPC blog. Click here to view the CVS Caremark blog.
4. Mental Health America: 2019 Call for Proposals is Now Open
Mental Health America is now accepting workshop proposals for its 2019 Annual Conference Dueling Mental Health and Chronic Conditions in Children and Adults. “There is a lack of uniformity across the health spectrum in how illnesses are categorized and deemed as chronic diseases and chronic conditions. Not only does this create confusion, but it may lead professionals across the spectrum to focus on specific illnesses and disregard other aspects of the person being treated, including co-occurring issues like mental health conditions and broader societal conditions such as poverty, trauma, and racism. To effectively treat an individual, we must look at the whole person, which means examining the connections that exist between traditional chronic physical conditions and mental health concerns. At MHA’s Annual Conference, we will offer a traditional mixture of keynote speakers, plenary discussions and workshop panels.” Click here for details.
5. Don’t Miss a Beat: The Latest on Heart Valve Disease Research and Policy
The Heart Valve Disease Policy Task Force will host a briefing on Capitol Hill to discuss heart valve disease research and policy. “Join us for an educational lunch briefing to learn about: the latest in heart valve disease research from leadership at the National Heart, Lung, and Blood Institute, the heart valve disease patient experience, the transcatheter aortic valve replacement (TAVR) National Coverage Determination from the Centers for Medicare and Medicaid Services, and how volume requirements impact smaller communities and rural hospitals.” Contact firstname.lastname@example.org to RSVP.
6. Beyond Opioids: Evidence-Based Delivery of Alternative Treatments for Chronic Pain
PCORI will host a briefing on Capitol Hill to discussed evidenced-based delivery of alternative treatments for chronic pain. “There is evidence to support the efficacy of alternative treatments for chronic pain—including cognitive behavioral, physical, and pharmacologic therapies—what we don’t know is how to implement these strategies in different populations with different care needs and goals. Chronic pain patients are individuals, each with a unique set of pain management needs. Comparative clinical information is needed to determine what works, for whom, and when. Congress is currently considering legislation—The Opioid Crisis Response Act of 2018—that includes provisions encouraging the use of non-addictive alternatives to opioids. It is crucial that Congress understand the value of research in building an evidence-base that can inform the wider use and implementation of safer chronic pain treatment modalities in real-world clinical settings.” Click here for details.
7. Other Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
Prostate Cancer: Final Evidence Report 10/4/18
Amyloidosis: Final Report 10/4/18
Hereditary Angiodema: Public Meeting 10/25/18
Opioid Use Disorder: Draft Evidence Report 9/5/2018 with comment period through 10/4/2018
Asthma: Draft Voting Questions and Evidence Report 9/24/2018 with comments through 10/22/2018
Atherosclerotic Cardiovascular Disease: Draft Scoping Document 8/30/2018, comments open through 12/17/18
Spinal Muscular Atrophy: Revised Scoping Document Published 9/19/18
8. GHLF: A Patient’s Guide to Insurance Enrollment
The Global Healthy Living Foundation (GHLF) has launched “A Patient’s Guide to Insurance Enrollment,” for the chronic disease patient community and their families to consult prior to, and throughout, the upcoming 2019 open enrollment period. “Living with a chronic illness is tough, and dealing with health insurance doesn't make it any easier. That's why we've put together this guide on health insurance and Open Enrollment 2019. Learn how to get covered, how to tell if your medication is covered, and important things to watch out for.” Click here to view.
9. Medical Xpress: Patient-Centered Visual Aid Helps Physicians Discuss Risks, Treatments With Parents
An article in Medical Xpress discusses how visual aids can help patients and physicians make informed, patient-centered decisions. “A series of illustrations and charts designed as decision aids for parents of children with minor head injuries helped them communicate with emergency medicine physicians and make informed decisions about their child's care, according to a study that will appear Sept. 21 in JAMA Network Open. The study, led by investigators at the Mayo Clinic, was conducted in seven medical centers, one of which was UC Davis Medical Center's emergency medicine department in Sacramento. It included 172 clinicians who cared for 971 children aged 2 to 18 who were evaluated for minor head trauma and were at intermediate risk for TBI. ‘Parents who used the decision aid had a better understanding of the symptoms of concussion, their child's relative risk of brain injury, and the pros and cons of cranial CT scans compared with active monitoring of signs and symptoms at home that would require a return visit to the emergency department,’ said Erik Hess, an emergency medicine physician and first author of the study who is now at the University of Alabama Medical Center in Birmingham.” Click here to read the article.
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit
The 2018 Health Care Payment and Learning Action Network (LAN) will hold its fall summit on Monday, 0ctober 22, 2018, including a panel on patient engagement with PIPC Executive Director Sara van Geertruyden. The 2018 Summit will continue to build on the momentum of the LAN by bringing together stakeholders from across the health care system to transform payment in a way that emphasizes quality over volume. The Summit will feature leaders and innovators in health care as speakers in plenary and break-out sessions throughout the day, including the following: Industry leaders discussing an array of innovations in payment reform, touching on implementation methods and lessons learned; Federal and state health care purchasers describing how they are addressing the current and future health care delivery challenges via new payment models that put the patient first; and LAN Summit attendees collaborating in facilitated workshops designed for specific stakeholder groups focusing on vital areas of interest – and challenges — surrounding design and implementation of APMs. Click here to register.
11. 2018 PCORI Annual Meeting
The 2018 PCORI Annual Meeting will take place on Wednesday, October 31, 2018 to Friday, November 2, 2018 in Washington, DC. “As part of this year's theme, ‘From Evidence to Impact: Putting What Works into Action,’ attendees will hear about results from PCORI’s comparative clinical effectiveness (CER) studies, efforts to promote essential findings, and those findings’ impacts. We will also discuss important trends in patient-centered outcomes research and connect with colleagues to share ideas for future research opportunities that will help patients and those who care for them make better-informed healthcare decisions. We are pleased to host two keynote speakers, Amy Berman, RN, Senior Program Officer, John A. Hartford Foundation, and Mark Smith, MD, founding president, California Health Care Foundation.” Click here for details.
12. Upcoming Events and Webinars
PCORI Invoicing 101: Tips, Tricks and Reminders
September 27, 2018
Click here for details.
Training Course on Real-World Data
September 27-28, 2018
Click here for details.
Beyond Opioids: Evidence-Based Delivery of Alternative Treatments for Chronic Pain
October 2, 2018
Click here for details
Second Annual Duke-Margolis Conference on Real-World Data and Evidence
October 3, 2018
Click here for details.
3rd Annual Outcomes-Based Contracting Summit
October 3-4, 2018
Click here for details.
Cycle 3 2018 Improving Methods Applicant Town Hall
October 17, 2018
Click here for details.
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
13. Medical Journal Articles
Key Issues and Potential Solutions for Understanding Healthcare Preference Heterogeneity Free from Patient-Level Scale Confounds, click here to view.
Applying a Community-Based Participatory Research Framework to Patient and Family Engagement in the Development of Patient-Centered Outcomes Research and Practice, click here to view.
The Community and Patient Partnered Research Network (CPPRN): Application of Patient-Centered Outcomes Research to Promote Behavioral Health Equity, click here to view.
Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards, click here to view.
"Precision Health" for High-Need, High-Cost Patients, click here to view.
Industry Sponsorship and Research Outcome: Systematic Review with Meta-Analysis, click here to view.
Picture This: Presenting Longitudinal Patient-Reported Outcome Research Study Results to Patients, click here to view.
Patient-Reported Outcome Measures in the Food and Drug Administration Pilot Compendium: Meeting Today's Standards for Patient Engagement in Development, click here to view.
A Qualitative Study of Patients' Perceptions of the Utility of Patient-Reported Outcome Measures of Symptoms in Primary Care Clinics, click here to view.
Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network, click here to view.
A Novel Stakeholder Engagement Approach for Patient-Centered Outcomes Research, click here to view.
Multistakeholder Engagement in PCORnet, the National Patient-Centered Clinical Research Network, click here to view.
Return of Research Results to Study Participants: Uncharted and Untested, click here to view.
14. AHRQ Effective Program Updates
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.