1. PIPC Joins CancerCare in Encouraging New York State to Reject QALYs, click here to read the letter.
2. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to view the webinar.
3. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view.
4. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
5. Experts at PCORI Discuss the Evolution of Patient Voices in Healthcare, click here to read the article.
6. PIPC Encourages Senate HELP Committee to Pursue Patient-Centered Approaches to Lower Health Care Costs, click here to read the letter.
7. PCORI Offering Scholarships to Attend its Annual Meeting, see details below.
8. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
9. PCORI Advisory Panel Openings, see details below.
10. Roundtable Seeks to Create Patient-Centered Quality Measurement Rubric, click here to read a summary.
11. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
PIPC, CancerCare, and over 40 other patient advocacy groups sent a letter to legislators in New York State calling on them to reject a provision in the Executive Budget that would authorize the use of QALY-based research to determine the value of treatments. "While we agree that lowering health care costs and affordability represent important policy challenges, we do not think that the state should facilitate the denial of or restrictions on access to medically necessary treatments that can improve and/or save the lives of patients. State policy should not establish a mechanism that deems some patients and people with disabilities as "too expensive" to receive care," the group wrote. Click here to read the letter.
2. PIPC Webinar: Value Assessments and Their Impact on Patients
On February 26, the Partnership to Improve Patient Care (PIPC) brought together advocates representing people with disabilities, patients, seniors, individuals experiencing disparities in care, providers and others for a webinar to learn about value assessments, their potential for discrimination, and related public policy threats to beware of at both the federal and state level. Metrics for measuring the “cost effectiveness” or value of treatments often relies on the quality-adjusted-life-year (QALY), which inherently discriminate against people with disabilities and serious chronic conditions. This webinar arms advocates with the information they need to oppose discriminatory value assessments from being incorporated into public programs such as Medicare and Medicaid that ultimately are used to deny coverage and access to patients. Click here to view the webinar.
3. 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: Breast cancer patients are not receiving access to to life-saving medications. As a result of widespread criticism, PHARMAC is set to review its practices of breast cancer drug funding. Click here to read more. Patients in New Zealand also face barriers to access for treatment of spinal muscular atrophy. Click here to read more.
- Canada: Discriminatory cost effectiveness measures are blocking access to care for patients with spinal muscular atrophy patients. Click here and here to read more. 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.
- Netherlands: Cost effectiveness measures are blocking access to cystic fibrosis treatments for children. It also remains unavailable for adults because the government has failed to reach an agreement. Click here to read more.
- United Kingdom: English families are moving to Scotland and Ireland in an attempt to access MS drugs not covered by the NHS. Activists are fighting for access to treatments for cystic fibrosis and cancer. Click here, here, and here for articles related to cystic fibrosis. Click here and here to read about the fight for access to cancer drugs in Scotland. Click here for an article related to MS. Click here for more information on the NHS drug approval process.
4. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy
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:
- Cardiovascular Disease : 9/26/2019 Meeting: Midwest CEPAC to deliberate and vote on ICER's report on evidence presented in ICER's report on additive CVD therapies.
- Spinal Muscular Atrophy: 3/28/2019: Final Evidence Report and Meeting Summary.
- Depression: Draft Evidence Report: 3/21/2019. Meeting 5/23/2019: Midwest CEPAC to review evidence on esketamine as a therapy for treatment-resistant depression.
- Multiple Sclerosis: Draft Evidence Report: 3/14/2019. Meeting 5/23/2019: Midwest CEPAC to review ICER's assessment of siponimod (Novartis) for secondary progressive multiple sclerosis.
- Peanut Allergy: Draft Evidence Report: 4/9/2019. Meeting 6/11/2019: CTAF to review ICER's assessment of treatments for peanut allergy.
- Duchenne Muscular Dystrophy: Draft scoping document available. Meeting 7/25/2019: New England CEPAC to deliberate and vote on evidence presented in ICER's report on treatments for Duchenne muscular dystrophy.
- Unsupported Price Increase Assessment: 3/15/2019: Revised protocol and Open Input Period.
5. Experts at PCORI Discuss the Evolution of Patient Voices in Healthcare
In a blog post for the journal Health Affairs, three PCORI researchers highlight how consumers have been empowered to have a greater say in healthcare and where to go from here. "Progress has been facilitated by several trends, such as community-based participatory research, the work of numerous patient advocacy groups dedicated to the concept of 'nothing about me without me,' and the emphasis on supporting authentic and meaningful patient and family engagement," they write. "Meaningful consumerism in health care starts with patients and requires they be active participants throughout the journey, from research through care delivery. This is what we mean by engagement. Nearly a decade on, this remains a core element of PCORI’s approach to funding studies that compare two or more health care options, looking at outcomes important to patients to determine what works best for whom." Click here to read more.
6. PIPC Encourages Senate HELP Committee to Pursue Patient-Centered Approaches to Lower Health Care Costs
PIPC Chairman Tony Coehlo sent a letter to Senate Committee on Health, Education, Labor, and Pensions (HELP) Chairman Lamar Alexander (R-TN) urging patient-centered approaches to bringing down costs in the healthcare system. "Health care stakeholders – ranging from patients, providers, and innovators – understand that a value-based health care system that truly supports advancements in personalized and individualized medicine must be built on a foundation of patient-centeredness. Patient-centered, evidence-based health care can lower overall spending by ensuring patients are able to receive timely treatment that is right for them, avoiding downstream costs, and improving patient outcomes. We look forward to engaging with the Committee as you seek approaches to reduce health care spending and improve patient outcomes in the U.S," he wrote. Click here to read the letter.
7. PCORI Offering Scholarships to Attend its Annual Meeting
PCORI is pleased to offer scholarships for patients, caregivers, and patient representatives to attend the 2019 PCORI Annual Meeting. This is a competitive opportunity that will award a limited number of scholarships. PCORI recognizes that patients, caregivers, and patient representatives offer valuable perspectives and expertise to the 2019 PCORI Annual Meeting. PCORI seeks to ensure fair representation of historically underrepresented and minority patient communities, diverse geographic representation, and a mix of new and returning PCORI Annual Meeting attendees through this opportunity. The deadline for scholarship applications is March 15th, 2019 at 5:00PM EST. Click here to read more and apply.
8. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences
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 protected].
9. PCORI Advisory Panel Openings
PCORI is now accepting nominations and applications for new members of four of its advisory panels: Health Delivery and Disparities Research, Patient Engagement, Clinical Trials, and Rare Disease. PCORI’s advisory panels provide important guidance on everything from refining and prioritizing research questions for potential funding, to offering feedback on the design of research studies, to engaging patients as partners throughout the research process. If you are interested in serving on a panel or would like to nominate a candidate, the deadline to submit applications and nominations is Friday, March 29. You can find details about each panel and the application process here: http://bit.ly/advisorypanels
10. Roundtable Seeks to Create Patient-Centered Quality Measurement Rubric
This week, a group of quality measurement experts, patient advocates, caregivers, and patients led by the Pharmacy Quality Alliance, the National Quality Forum, and the National Health Council held its first meeting to develop a rubric for assessing the patient-centeredness of quality measures. “The patient perspective is critical in developing quality measures that capture and measure what truly maters to patients and is most impactful,” said Eleanor Perfetto, PhD, MS, Senior Vice President, Strategic Initiatives at the National Health Council. “This rubric will help facilitate the development of effective, patient-centric quality measures.” Click here to read more.
11. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus
In the interest of amplified patient and stakeholder engagement, your organization may be interested that the House Majority Leader’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Feel free to share any events you have planned. If we hear of similar efforts by the Minority Leader, we hope to share that as well. Please submit your events, here.
12. Upcoming Events and Webinars
Quality Forum Webinar: Medication Access: Leveraging Quality Measurement to Address Social Determinants of Health
March 14, 2019
Click here for details.
PCORI Board of Governors Meeting
March 19, 2019
Click here for details.
Webinar: Using Real-World Evidence for U.S. Regulatory Decision-Making: What Pharma Needs to Know
March 20, 2019
Click here for details.
Webinar: Effective Ingestion and Normalization of Real-World Data Sources
March 21, 2019
Click here for details.
NPC @ National Quality Forum Annual Conference
March 24-26, 2019
Click here for details.
NPC @ Health Datapalooza 2019
March 27-28, 2019
Click here for details.
Cycle 1 2019 Limited PCORI Funding Announcement: Partnerships To Conduct Research (PaCR) within PCORnet
April 3, 2019
Click here for details.
Webinar: MCDA - How to Guide Through the Application of Different Methods for Assessment and Prioritization of Rare Disease Health Technologies
April 4, 2019
Click here for details.
Big Data, RWD and RWE: What’s the Difference and How is it Changing the Research Landscape?
April 15, 2019
Click here for details.
PCORI Board of Governors Meeting
April 16, 2019
Click here for details.
Cycle 2 2019 Improving Methods Applicant Town Hall
May 9, 2019
Click here for details.
Advisory Panel on Clinical Trials Spring 2019 Meeting
May 15, 2019
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2019 Meeting
May 16, 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.
13. Medical Journal Articles
Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute, click here to view.
Quality Decision Making in Health Technology Assessment: Issues Facing Companies and Agencies, click here to view.
Letter: Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project, click here to view.
Perspectives of Patients in Identifying Their Values-Based Health Priorities, click here to view.
How Patient's Access to Evidence-Based Medicine Provides Them with a New Hope "The 45 Min—An Insightful Round," click here to view.
Improving Patient-Reported Measures in Oncology, click here to view.
Moving Forward from Drug-Centred to Patient-Centred Research, click here to view.
Eliciting Patient-Important Outcomes Through Group Brainstorming: When Is Saturation Reached? Click here to view.
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.
14. AHRQ Effective Program Updates
Comment Period: Antipsychotics for the Prevention and Treatment of Delirium, click here to view.
Nonopioid Pharmacologic Treatments for Chronic Pain, click here to view.
Systematic Review Update: Noninvasive Nonpharmacologic Treatments for Chronic Pain, click here to view.
Treatment of Acute Pain: An Evidence Map, click here to view.
Development of Harmonized Outcome Measures for Use in Patient Registries and Clinical Practice: Methods and Lessons Learned, click here to view.
Standardized Library of Depression Outcome Measures, click here to view.
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.