1. PIPC Patient Blog: Patient Perspectives on the Quality Adjusted Life Year, click here to read the blog.
2. Will ICER's Response to Attacks on the QALY Quiet the Critics? A Reply from the Partnership to Improve Patient Care, click here to read the full response.
3. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
4. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to register.
5. Column: Americans Have Healthier Hears. We Have A Healthier Budget, Too, click here to read the column.
6. ONS Blog: Experience the Power of Patient-Centered Research Through PCORI, click here to read the blog.
7. Watch: Keeping Community Engagement Central to Rare Disease Research, click here to watch the video.
8. UNLV Blog: The Patient-Centered Approach to Quality-of-Care Life, click here to read the blog.
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
10. PIPC: Don't Discriminate on Care, click here to view.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view.
12. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.
In PIPC's newest patient blog, Cancer Policy Institute Executive Director Elizabeth Franklin writes about their new study on patient perspectives on the QALY metric used in value assessments. "The Cancer Support Community(CSC) was interested in patient perspectives on the QALY—particularly considering the wide-ranging impacts that the measure has on patients, especially those living with life-limiting illnesses such as cancer. The QALY combines morbidity (quality of life) with mortality (quantity of life) to estimate the value of specific health interventions. The QALY and cost-per-QALY inform discussions and policy decisions regarding the allocation of healthcare resources."
"The QALY, however, has significant limitations. It does not allow for changing patient preferences over time or other objectives such as fairness, equity, or political goals. The QALY was never intended to be used as an individual decision-making tool. Although the QALY is based on patient preferences, these preferences are determined by surveying samples of various populations—not by those who are actually making real-time decision about care. The QALY also makes assumptions and places worth on varying states of quality of life—inherently discriminating against individuals living with disabilities or those in a disabled state." Click here to read the blog.
2. Will ICER's Response to Attacks on the QALY Quiet the Critics? A Reply from the Partnership to Improve Patient Care
PIPC Chairman Tony Coehlo offered a response to the Center for the Evaluation of Value and Risk in Health's (CEVR) blog that questioned whether ICER's new Equal Value of Life Years Gained (evLYG) assessment would silence the criticism about ICER's value assessment metrics. "In response to a recent blog post entitled 'Will ICER’s Response to Attacks on the QALY Quiet the Critics?' (December 18, 2018) we must unfortunately reply: Absolutely not. Regrettably, ICER’s response suggests that for patients, the only options are a) a metric that is widely acknowledged to discriminate against the elderly and people with disabilities, or b) a metric that ignores elements of value that are critically important to patients. Patients need another option, and PIPC is committed to supporting it. We appreciate the opportunity to respond to comments made by the researchers at Tufts on our concerns around the QALY. We respect researchers who have invested long years and considerable expertise in QALY-based value assessment. But we also respectfully suggest that it’s time to acknowledge that these assessment tools are dangerous and will never be appropriate for decision-making." Click here to read the full response.
3. 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 firstname.lastname@example.org.
4. PIPC Webinar: Value Assessments and Their Impact on Patients
The Partnership to Improve Patient Care (PIPC) invites advocates representing people with disabilities, patients, seniors, individuals experiencing disparities in care, providers and others to join our 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 will arm 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. The webinar will be held on Feb. 26 from 1:30-2:30 PM. Click here to register.
5. Column: Americans Have Healthier Hears. We Have A Healthier Budget, Too.
In a column for The Washington Post, Catherine Rampell highlights how patient-centered care is leading to better health and lower costs. "The conventional wisdom among health policy experts has long been that preventive medicine does not save money. It has other virtues — including, well, making people healthier. That’s quite a good thing! But study after study has found that in dollar terms, at least, investing more in preventive care doesn’t pay off. This new paper suggests that at least when it comes to heart health, that’s not the case. Lower-than-expected cardiovascular spending appears to be primarily due to successful use of preventive measures, the authors find. Greater use of statins, anti-hypertensives, diabetes medications and aspirin has helped prevent lots of expensive health events and contributed to outright declines in hospital admissions for heart disease and stroke." Click here to register.
6. ONS Blog: Experience the Power of Patient-Centered Research Through PCORI
Susan Wozniak discusses the 2018 PCORI Annual Meeting and the need for more oncology-focused PCORI ambassadors in a blog post for the Oncology Nurses Society. "We closed with keynote and plenary sessions focusing on the impact of patient-centered research on healthcare consumerism and the translational research that’s currently in progress. These studies bring new discoveries to implementation, promoting shared decision-making approaches in practice. If you think this sounds exciting, then PCOR needs you. Some of the ways PCORI seeks to incorporate voices from across the healthcare community into their work is through PCORI advisory panels, merit reviewers, and peer reviewers. Also, PCORI ambassadors are needed, and oncology nurses provide a valuable perspective to that work. The ambassador program is open to anyone interested in advancing patient-centered research and getting involved with PCORI." Click here to read the blog.
7. Watch: Keeping Community Engagement Central to Rare Disease Research
In a video for PCORI, Vanessa Boulanger shares how the National Organization for Rare Disorder's work to engage rare disease communities is central to its research efforts, and how the PCORI Advisory Panel on Rare Diseases helps move rare disease research forward. "Community engagement is core to all of NORD's research initiatives. Active engagement with the community and participation at the community level drives and informs all or NORD's research work. It helps us generate ideas, it helps us understand the needs, and it helps us understand the challenges that are persistent in the communities that we work with." Click here to watch the video.
8. UNLV Blog: The Patient-Centered Approach to Quality-of-Care Life
In a blog post for the University of Nevada, Las Vegas (UNLV) Kevin Dunegan writes how PCORI-funded research is helping the UNLV School of Medicine implement patient-centered palliative care to Southern Nevada’s Asian communities. “...[Jay Shen] leads a collaborative research team with Catherine Dingley, an associate professor in the UNLV School of Nursing, and Dr. Ji Yoo, who specializes in internal medicine and geriatrics at the UNLV School of Medicine. Since 2015, the team has been funded by PCORI four times and remains the only research team in the state to have received financial support from the organization. Their latest proposal brought in the $250,000 Eugene Washington Community Engagement Award and is aimed at Nevada's Asian communities, which tend to not access the palliative care resources available to them.” Click here to read the blog.
9. 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.
10. 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.
11. 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.
12. 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: 3/7/2019 Public meeting.
- Depression: Model analysis plan . 1/14/2019 Research Protocol. Also note interventions of interest for 2019 review: Esketamine (Janssen). Model advancement plan 2/4/2019.
- Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis. 1/14/20119 Research Protocol. Model Advancement plan 1/29/2019
- Peanut Allergy: Stakeholder list available. Revised scoping document on 12/20/2018. 4/9/2019 Draft Evidence Report. CTAF meeting 6/11/2019
- Duchenne Muscular Dystrophy: Draft scoping document available. Vote on 7/25/2019
- Unsupported Price Increase Assessment: Draft protocol available.
13. Upcoming Events and Webinars
Webinar: MACRA Information Session — Patient-Reported Outcome Performance Measures (PRO-PMs)
February 13, 2019
Click here for details.
Webinar: How Real-World Evidence Is Playing Out In The Real World
February 14, 2019
Click here for details.
Using Real World Evidence to Build Dynamic Cohorts in Real-Time
February 20, 2019
Click here for details.
PCORI Board of Governors Meeting
February 26, 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.
14. Medical Journal Articles
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.
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.
15. 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.