1. Chairman's Corner: ICER Should Join Others in Moving Beyond QALYs, click here to read the blog.
2. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
3. An Update From the Friends of PCORI Reauthorization Coalition, see details below.
4. PIPC: 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? Click here to view.
6. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
In his most recent Chairman's Corner blog, PIPC Chairman Tony Coelho encourages ICER to adandon QALY-based value metrics. "The Partnership to Improve Patient Care (PIPC) has a long history advocating for the perspectives of patients and people with disabilities to be considered in the value assessment of treatment options. It is a step in the right direction for the Institute for Clinical and Economic Review (ICER) to advance a new project to develop and test alternative methods for the evaluation of potentially curative treatments. As part of this work, we encourage ICER to consider innovative methodologies beyond flawed cost effectiveness methodologies that use a quality-adjusted-life-year (QALY) or similar metric. This process could be an opportunity to learn from the mistakes of other countries that have embraced the use of a cost-per-QALY metric to determine treatment value with serious implications for access to care by people with disabilities and serious chronic conditions." Click here to read the blog.
2. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences
The Innovation and Value Initiative (IVI) recently released the initial version of its new Open-Source Value Platform (OSVP) model for non-small cell lung cancer. Specifically, the platform will be assessing the relative value of sequential treatments for epidermal growth factor receptor positive (EGFR+), non-squamous non-small cell lung cancer (NSCLC).
IVI, a nonprofit organization dedicated to advancing the science and improving the practice of value assessment in healthcare, has now developed two open-source platforms from which healthcare value assessment tools can be built and utilized. The entirety of IVI’s modeling package, including a dynamic and engaging user interface, can be found IVI’s website.
The public comment period will remain open until April 1, 2019 and IVI encourages stakeholder comment on their model. The feedback received during this public comment period will provide the basis for improving the model. IVI has engaged an external technical expert panel to synthesize comments and recommend prioritized modifications for inclusion in the second release of the IVI-NSCLC platform.
For more information contact IVI’s executive director, Jennifer Bright at email@example.com.
3. An Update from the Friends of PCORI Reauthorization Coalition
Dear Friends of PCORI Reauthorization:
Organizations supporting PCORI’s reauthorization gathered on January 15, 2019 with Senate staff to discuss PCORI reauthorization. We urge those engaged in advocating for PCORI reauthorization to include PCORI reauthorization in your messages for Hill visits and advocacy days among your members to help educate Congressional members and staff on the great work PCORI is doing. To facilitate your advocacy, we are working on a centralized website that will include advocacy materials and link to PCORI’s state-by-state materials (currently accessible on PIPC’s website) and backgrounders. Please click here to confirm that your organization wants to be listed as a member of Friends of PCORI Reauthorization. Please reach out to firstname.lastname@example.org with any questions or concerns.
4. PIPC: Don't Discriminate on Care
Patients and people with disabilities face major threats as private insurers and government programs look to cut costs using quality-adjusted-life-years (QALYs) and other assessments that discriminate against patients, people with disabilities and seniors. Recently, new threats have emerged, including:
- A pharmacy benefit manager’s new plan to limit access to prescription drugs using a rigid cost-per-QALY threshold, similar to that used by the United Kingdom’s National Health Service;
- The use of cost-per-QALY thresholds in New York’s Medicaid program;
- A new Medicare proposal that would set reimbursement for physician-administered medicines based off of decisions made in countries that use QALYs and cost effectiveness thresholds to set national coverage.
Join us in opposing discriminatory denials of care across our health insurance system. Patients and people with disabilities deserve to have our lives valued, because nobody should be considered too expensive to get the care they need. Click here to learn more. Click here to view our petition.
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.
- New Zealand: Patients are not getting access to treatment, and some are forced to leave the country to access treatments. Click here, here and here to read more.
- Canada: Click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here for an article about high costs of Parkinson's and MS treatments. Spinal muscular atrophy advocates are similarly petitioning Health Canada to expand access to treatment. Click here to view the article.
- United Kingdom: Click here for more information on the NHS drug approval process. Activists are fighting 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. Click here for an article related to MS.
6. 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:
- Spinal Muscular Atrophy: 12/20/2018-1/31/19 Open Input on draft report!! 3/7/19 Public meeting.
- Depression: Revised scoping document available on treatment-resistant depression. 1/14/19 Research Protocol. Also note interventions of interest for 2019 review: Esketamine (Janssen)
- Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis. 1/14/19 Research Protocol.
- Peanut Allergy: Stakeholder list available. Revised scoping document on 12/20/2018. 4/9/19 Draft Evidence Report.
- Duchenne Muscular Dystrophy: Draft scoping document available. Vote on 7/25/2019
- Unsupported Price Increase Assessment: Draft protocol available.
7. Upcoming Events and Webinars
Webinar: How Real-World Evidence Is Playing Out In The Real World
February 14, 2019
Click here for details.
PCORI Board of Governors Meeting
February 26, 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.
8. Medical Journal Articles
Patient-Community Perspectives on Real-World Evidence: Enhancing Engagement, Understanding, and Trust, click here to view.
A Narrative Review of Data Collection and Analysis Guidelines for Comparative Effectiveness Research in Chronic Pain Using Patient-Reported Outcomes and Electronic Health Records, click here to view.
A Patient-Centered Approach to Comparative Effectiveness Research Focused on Older Adults: Lessons From the Patient-Centered Outcomes Research Institute, click here to view.
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
Developing a Patient-Centered Outcome for Targeting Early Childhood Obesity Across Multiple Stakeholders, click here to view.
Cancer Patient Perspectives on the Use of Clinical Pathways and Shared Decision-Making in Cancer Care, click here to view.
In Proportion: Approaches for Displaying Patient-reported Outcome Research Study Results as Percentages Responding to Treatment, click here to view.
If Patients Are the True North, Patient-Centeredness Should Guide Research, click here to view.
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.
9. AHRQ Effective Program Updates
Patient Navigation Models for Lung Cancer, click here to view.
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.