1. PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to firstname.lastname@example.org.
2. PIPC Patient Blog: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People, click here to read the blog.
3. MedPage Today: Outcomes Research Group Likely to Be Reauthorized, click here to read the article
4. Briefing: Value Assessment and Patient Engagement — Why Patient Voices Matter,click here to RSVP.
5. Tell Insurers: Don't Discriminate on Care, click here to view.
6. Aimed Alliance Report: Putting Profits Before Patients — Provider Perspectives on Health Insurance Barriers That Harm Patients, click here to read the report.
7. IFAA Hosts Inaugural ACTion Council Meeting, click here to learn more.
8. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply.
9. Register: PQA’s Social Determinants of Health Forum, click here to register.
10. The PCORI Blog: Partnering to Help People with Obesity Better Understand Their Surgical Options, click here to read the blog.
11. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
12. Mental Health America: 2019 Call for Proposals is Now Open, click here for details.
13. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
14. Upcoming Events and Webinars, see details below.
15. Medical Journal Articles, see details below.
16. AHRQ Effective Program Updates, see details below.
The 8th Annual PIPC Forum will be held on December 6 from 12:30-2:30pm at the Reserve Officers Association located at 1 Constitution Avenue, NE, Washington, DC 20002. Please RSVP to email@example.com “Health care payers, policy-makers and providers are proposing and implementing new payment incentives and building value standards. In concept, the move to value can help patients by promoting access to affordable care that they value sustaining the system overall. In practice, many real-world examples of moving to value leave patients and people with disabilities behind. It is essential for patients and people with disabilities to be leading the way on new solutions. Please join us at the PIPC Annual Forum where we will focus on alternative, evidence-based strategies for making health care decisions that reflect our values.” Click here for details.
2. PIPC Patient Blog: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People
PIPC’s newest patient blog features Ari Ne’eman’s post in Health Affairs Blog, where he argues against CVS Health’s use of the quality-adjusted-life-years metric in determining coverage for crucial therapies. “CVS Caremark may counter that the company intends to use QALYs only to contain costs, not to discriminate. Unfortunately, the discriminatory nature of the QALY is built into its very structure. Cost-per-QALY calculations inherently privilege treatments that extend the lives of those who can be restored to perfect health, and disadvantage the many who seek life-extending treatments despite having a disability or chronic condition that is not curable. This subjective valuing of non-disabled lives over disabled lives has historically prevented the adoption of the QALY by public payers in the United States. When Oregon attempted to introduce a QALY-based rationing system in 1992, the federal government denied them permission to proceed, citing the newly passed Americans with Disabilities Act and its non-discrimination mandate. Similarly, disability rights advocates successfully secured a prohibition on the use of QALYs in Medicare in the Affordable Care Act. Though not legally barred, large-scale, systematic use of QALYs in treatment coverage decisions by private payers is also unprecedented in the United States.” Click here to read the blog.
3. MedPage Today: Outcomes Research Group Likely to Be Reauthorized
In an article for MedPage Today, Joyce Freiden reports that PCORI is likely to be reauthorized in 2019. “...‘I do still think we'll have some tough questions to answer: How long should PCORI re-funding be? Should it be funded at a higher level? A lower level?’ Greg Mathis, health policy advisor to Sen. Mark Warner (D-Va.), said at PCORI's annual meeting. ‘In terms of timeline, we have 9 months. There are conversations being had about what an reauthorization will look like. There won't be major changes -- if you had to ask me, that's my writing on the wall -- but I think there will be tweaks and we'll see what that looks like with input from you all,’ he told the audience.” Click here to read the article.
4. Briefing: Value Assessment and Patient Engagement — Why Patient Voices Matter
PIPC Executive Director Sara van Geertruyden and Disability Advocate Ari Ne’eeman will be speaking at a panel discussion on value assessment and patient engagement this Thursday, November 8 from 12:00-1:30 PM. “As we evolve toward a value-driven health care system, meaningful patient engagement is a key part of ensuring the incorporation of patient centered priorities in health care delivery and design. Join in a discussion with key leaders to learn more about how value is measured, how payers and policymakers are using value assessment to shape access and how policies related to value assessment are affecting patients and disabled persons.” Click here to RSVP.
5. Tell Insurers: Don't Discriminate on Care
PIPC Chairman stated in his blog, "Health-care payers are missing a tremendous opportunity to improve the health of our nation in a uniquely American way — by making health care about the individual person, based on his or her own characteristics.” Unfortunately, in August, the pharmacy benefit manager CVS Caremark announced that they would offer new plans to employers 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. 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. Join PIPC in demanding that insurers and others stop relying on discriminatory cost-effectiveness thresholds to drive care decisions. Click here to learn more.
6. Aimed Alliance Report: Putting Profits Before Patients — Provider Perspectives on Health Insurance Barriers That Harm Patients
A new report from the Aimed Alliance shows that nine in ten primary care physicians (92 percent) say staff employed by insurance companies are not competent to make medical decisions about treatment regimens. “This finding underscores a disturbing reality for the nation: As physicians lose more control of medical decision-making to unqualified insurance company personnel, many doctors are looking to leave the profession, escalating a shortage of primary care physicians projected to reach between 14,800 and 49,300 practitioners by 2030. As documented in Aimed Alliance’s new survey, 89 percent of today’s primary care doctors say they no longer have adequate influence in making health decisions and almost half (47 percent) worry patients are losing confidence in the care physicians provide. In response, almost half of the physicians who treat American families (48 percent) are considering getting out of medicine and 67 percent would not recommend a career in medicine to aspiring medical professionals.” Click here to read the report.
7. IFAA Hosts Inaugural ACTion Council Meeting
The International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA) recently hosted its inaugural ACTion Council meeting at the at the American College of Rheumatology conference. “Patient engagement in research started decades ago in many disease states, but only popularized in rheumatology in the late 1990’s in Canada, the early 2000’s in Europe, and after 2010 in the United States. What began primarily between patient and non-pharmaceutical researchers has now advanced to include patient collaboration with a variety of stakeholder groups, including industry and government. The ACTion Council has united a global representation of key stakeholders to help record the history of patient engagement in rheumatology research and track its’ continued evolution in methodology, Concepts of Involvement (i.e., Patient Research Partners, Patient-Centered Research Outcomes), and stakeholder participation. In addition to providing guidance to those new to the space, our work should result in fewer duplicated efforts, better potential to measure value, and more opportunity to develop innovative projects that take patient engagement to next levels.” Click here to learn more.
8. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures
The Centers for Medicare and Medicaid (CMS) are seeking nominations for a technical expert panel (TEP) examining CMS quality and efficiency measures. Health Services Advisory Group (HSAG) is seeking a TEP of approximately 15 to 20 individuals with the following perspectives and areas of expertise:
- Patient/family/caregiver perspectives
- Consumer and patient advocacy
- Social risk factors and disparities
- Health care quality improvement and clinical expertise in various settings (e.g., long-term care, acute care, ambulatory care, hospice)
- Quality measure development and evaluation, including statistical methods and survey design
- Health care economics and policy
Click here to apply. Applications due Friday, November 9, 2018.
9. Register: PQA’s Social Determinants of Health Forum
The Pharmacy Quality Alliance (PQA) is hosting the “Social Determinants of Health Forum: Exploring Medication Access and Quality” November 14-15 in Alexandria, Va. “Healthcare improvement initiatives have focused largely on health system factors. There is growing recognition that improving access to care and patient health, including access to medications, requires focus on social, economic and environmental factors. To help forum participants identify opportunities to improve medication access, PQA will unveil a conceptual framework describing the medication access patient journey and its implications for quality measurement. The forum also will explore the ROI of new care delivery models, discuss the role of healthcare providers, including pharmacists, and the utility of new data ecosystems in these models. PQA invites senior healthcare decision-makers to attend this interactive forum, as consensus and collaboration are needed to address unmet social needs and their impact on medication access and healthcare quality. There is no charge to attend, but individuals must register in advance. Please limit 2-3 representatives per organization.” Click here to register.
10. The PCORI Blog: Partnering to Help People with Obesity Better Understand Their Surgical Options
In a post for The PCORI Blog, David Arterburn and Neely Williams discuss PCORI-funded research that is helping obesity patients better understand their options. “...Researchers used data gathered through PCORnet to answer questions about the risks and benefits of the three most common surgical procedures that can help patients with severe obesity—a body mass index of 35 or higher—achieve weight loss not possible with diet and exercise alone. Thanks to PCORnet, they were able to complete the study in only two years, all while working with patients and other stakeholders who helped shape the study. To learn more about the study, its results and potential value to patients, we spoke with Williams and the study's principal investigator, David Arterburn, MPH.” Click here to read the blog.
11. DBSA Meeting: Patient Focused Drug Development Meeting
As a part of the Depression and Bipolar Support Alliance’s (DBSA) “Well Beyond Blue” campaign, DBSA will be hosting a meeting with the Food and Drug Administration (FDA) that focuses on patient-focused drug development. “Putting wellness within every individual’s reach is at the core of the DBSA mission, strategies, and programs. Key to that mission is educating decision-makers who conduct research, and make public health policy on wellness. That’s why we are hosting a meeting in the Washington, D.C. metro area on November 16, 2018 with the U.S. Food and Drug Administration (FDA) and drug and medical device manufacturers. This meeting will empower people living with depression and/or bipolar to share personal views on aspects of wellness that go beyond mere symptom reduction, as well as, name wellness strategies that work best for them. But we can’t do it without you. Our collective voices are needed in-person at this meeting which will be held in Silver Spring, MD. We intentionally scheduled the meeting to begin at 12:30 p.m., enabling people who live within driving distance to attend.” Click here to register.
12. 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. Deadline: November 30, 2018.
13. 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, Meeting agenda posted 10/25/18
Asthma: Draft Voting Questions and Evidence Report 9/24/2018 with comments through 10/22/2018
Spinal Muscular Atrophy: Revised Scoping Document Published 9/19/18, Research Protocol posted 10/17/18
14. Upcoming Events and Webinars
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
14th Annual Personalized Medicine Conference: Preparing for the New Possible
November 14-15, 2018
Click here for details.
PQA Social Determinants of Health Forum: Exploring Medication Access and Quality
November 14-15, 2018
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Fall 2018 Meeting
November 15, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
PCORI Board of Governors Meeting
December 11, 2018
Click here for details.
Advisory Panel on Rare Disease Winter 2018 Meeting
December 14, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
15. Medical Journal Articles
Comparative Effectiveness and Safety of Bariatric Procedures for Weight Loss: A PCORnet Cohort Study, click here to view.
Oh, the Places We'll Go: Patient-Reported Outcomes and Electronic Health Records, click here to view.
Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments, click here to view.
Development and Pre-Testing of the Patient Engagement In Research Scale (PEIRS) to Assess the Quality of Engagement from a Patient Perspective, click here to view.
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research- A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Unique Review Criteria and Patient and Stakeholder Reviewers- Analysis of PCORI's Approach to Research Funding, click here to view.
Patient Centered Research to Improve Community Involvement (PaRTICIpate) in Diabetes Self-Management: A Conference Series for Developing Collaborations Between Researchers, Stakeholders, and Patients, click here to view.
Synthesising Conceptual Frameworks for Patient and Public Involvement in Research – A Critical Appraisal of a Meta-Narrative Review, click here to view.
Go Slow to Go Fast: Successful Engagement Strategies for Patient-Centered, Multi-Site Research, Involving Academic and Community-Based Organizations, click here to view.
Unique Review Criteria and Patient and Stakeholder Reviewers: Analysis of PCORI's Approach to Research Funding, click here to view.
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research: A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Patient-Engaged Research: Choosing the "Right" Patients to Avoid Pitfalls, click here to view.
Engaging Patients in Health Care Epidemiology Research: A Case Example, click here to view.
A Beginning to Principles of Ethical and Regulatory Oversight of Patient-Centered Research, click here to view.
Oversight of Patient-Centered Outcomes Research: Recommendations From a Delphi Panel, click here to view.
16. AHRQ Effective Program Updates
Stroke Prevention in Patients With Atrial Fibrillation: A Systematic Review Update, click here to view.
Long-term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention: A Systematic Review, click here to view.
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
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.