1. PIPC Patient Blog: ‘Value’ Measures for Rationing Healthcare Devalue My Life, click here to read the blog.
2. PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to [email protected].
3. CARE About Fibroids Publishes Report on Uterine Fibroids in the U.S., click here to read the white paper.
4. Tell Insurers: Don't Discriminate on Care, click here to view.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
6. NPAF Policy Consortium: Talking About the Cost of Care in Shared Decision Making — Patient and Provider Perspective, click here to register.
7. Mental Health America: 2019 Call for Proposals is Now Open, click here for details.
8. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
9. Job Opening: Policy and Advocacy Coordinator for the Christopher and Dana Reeve Foundation, click here for details.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
PIPC’s newest Patient Blog, written by Rosie Bartel, urges the health care industry to abandon misguided “value” measures when determining the cost of care. “It’s not the job of the healthcare industry to tell people with disabilities what they’re worth. It’s their job to help us live the life we want to make for ourselves, according to how we value our health and well-being. I’m going to keep on fighting for years to come, both for myself and for others who share my experience. No one could tell me I wasn’t going to survive when I contracted an infection in my surgical site wound, and no healthcare company is going to tell me that my life isn’t worth living.” Click here to read the blog.
2. PIPC Forum 2018: Building Patient Standards — What do Patients Value?
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 protected] “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.
3. CARE About Fibroids Publishes Report on Uterine Fibroids in the U.S.
PIPC member CARE About Fibroids has published a patient-focused white paper on uterine fibroids in the U.S. ““One year after launching CARE About Fibroids, we are proud to publish our first patient focused white paper that aims to bring greater awareness and urgency around uterine fibroids,” said Jenny Rosenberg, the Executive Director of CARE About Fibroids. “We have put together a comprehensive report on the patient journey and the obstacles women face from managing the first symptoms to the economic and emotional toll on their lives including the impact to their families and loved ones. We believe this is a major step for us as we work to fulfill our mission of raising awareness of and better educating women, patients, caregivers, policymakers, and providers about uterine fibroids. We are looking forward to using this paper as an opportunity to take more actions that will help women with fibroids.” Click here to read the white paper.
4. 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.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care. In Canada, cystic fibrosis activists are petitioning their government for access to a new gene therapy drug. Click here to view the article. Spinal muscular atrophy advocates are similarly petitioning Health Canada to expand access to treatment. Click here to view the article. Similarly, in the United Kingdom, activists fight for access to treatments for cystic fibrosis and cancer. Click here and here for articles related to cystic fibrosis, and here for an article related to limited access to treatments for lung cancer. The Wall Street Journal’s Editorial Board recently opined on "why the U.S. shouldn’t put the world’s most innovative drug market at the mercy of what Greece is willing to pay for a cancer treatment.” Click here to view.
6. NPAF Policy Consortium: Talking About the Cost of Care in Shared Decision Making — Patient and Provider Perspective
The National Patient Advocate Foundation (NPAF) will host a Policy Consortium on November 29, 2018. “The event will take place the Newseum Knight Conference Center from 8:00 am – 2:30 pm. This consortium is the kickoff event for our year-long initiative on Cost of Care, funded by Robert Wood Johnson Foundation. This fall’s consortium explores the challenges patients and health care teams face in talking the financial burden of serious illness. Suleika Jaouad, writer and author of the New York Times blog, “Live, Interrupted” will provide a special patient perspective to open the event. Peter Ubel, MD, PhD of Duke University will present a luncheon keynote. By exploring cultural taboos and assumptions that inhibit talking about money; investigating patient’s attitudes about the role of their health care providers in these conversations; lack of transparency of health care cost information and barriers to cost conversations in the clinical work flow, we will consider innovative ways of raising the awareness of the importance of understanding the impact of financial toxicity on health care and assisting patients and caregivers with developing the knowledge and skills to facilitate these discussions.” Click here to register.
7. 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.
8. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression
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:
Hereditary Angiodema: Final report available.
Opioid Use Disorder: Final report 12/3/18.
Asthma: 11/29/18 Midwest CEPAC meeting, register here.
Spinal Muscular Atrophy: Model Analysis Plan available
Depression: Interventions of interest, 2019 review: Esketamine (Janssen)
Multiple Sclerosis: Secondary Progressive MS, Intervention of Interest: Siponimod (Novartis)
Peanut Allergy: Draft Scoping Document 11/20/18
9. Job Opening: Policy and Advocacy Coordinator for the Christopher and Dana Reeve Foundation
The Christopher and Dana Reeve Foundation is seeking applications for an open Policy and Advocacy Coordinator position. “This is a remote opportunity, located in Washington DC, for a motivated individual to join a policy team committed to making a difference in the lives of people with paralysis and/or mobility impairments. This role will offer an opportunity to learn more about the issues and initiatives that the Reeve Foundation is working on to address the difficulties faced by people with paralysis and their families and help support and advance that work. The role will also offer an opportunity to oversee the Reeve Foundation’s Regional Champions grassroots advocacy education program.” Click here for details.
10. Upcoming Events and Webinars
Harnessing the Power of Data Science and Real-World Evidence for Cancer Treatment, Access, and Care: Professional Development Webinar sponsored by the Public Health Alumni Association
November 29, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
Pre-rulemaking Overview: The 2018 Measures Under Consideration (MUC) List and How to Prepare for and Navigate the Process in 2019
December 5, 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.
Pharmacological Treatment for Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall -- Cycle 1 2019
January 22, 2019
Click here for details.
PCORI Board of Governors Meeting
January 29, 2019
Click here for details.
Patient Registries and Real-World Evidence Summit J
January 30-31, 2019
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 2019,
Click here for details.
11. Medical Journal Articles
Understanding and Improving Value Frameworks With Real-World Patient Outcomes, click here to view.
Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project, click here to view.
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.
Oversight of Patient-Centered Outcomes Research: Recommendations From a Delphi Panel, click here to view.
12. 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.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.