1. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to register.
2. PIPC Submits Comments to DoD on Proposed TRICARE Pharmacy Benefit Reforms, click here to read the letter.
3. Chairman's Corner: ICER Should Join Others in Moving Beyond QALYs, click here to read the blog.
4. PIPC Patient Blog: Patient Perspectives on the Quality Adjusted Life Year, click here to read the blog.
5. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
6. AcademyHealth: Engagement Science — Where Do We Go From Here? Click here to read the blog.
7. Patient EngagementHIT: Individualized Care Key for Employer-Sponsored Wellness Programs, click here to read the article.
8. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view.
10. ICER Studies: SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy click here to provide patient input
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below.
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. Click here to view an accessible PDF.
2. PIPC Submits Comments to DoD on Proposed TRICARE Pharmacy Benefit Reforms
In a comment letter to the Department of Defense (DoD), Partnership to Improve Patient Care (PIPC) offered feedback on the interim final rule concerning the TRICARE Pharmacy Benefit Programs. The letter encourages DoD to avoid adopting "one-size-fits-all" value metrics, and promote a TRICARE program that mitigates discrimination against people with disabilities and serious chronic conditions.“…We recommend the creation of an infrastructure for patient and beneficiary engagement in uniform formulary development under Tricare, to give members of the military and their families a voice in the determination of the value of treatments under the program, and throughout Tricare,” wrote PIPC Chairman Tony Coelho.
“We also recommend the incorporation of incentives for health care providers to use shared decision-making tools and decision aids that will enhance the ability for patients and their physicians to assess the highest value treatment for that individual patient. In this way, Tricare can deliver on the intent of this program to deliver high value care by arming beneficiaries with information to improve health decisions instead of putting hurdles in front of the care they need.” Click here to read the letter.
3. Chairman's Corner: ICER Should Join Others in Moving Beyond QALYs
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.
4. PIPC Patient Blog: Patient Perspectives on the Quality Adjusted Life Year
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.
5. 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.
6. AcademyHealth: Engagement Science — Where Do We Go From Here?
In a post for AcademyHealth Blog, Elizabeth Cope, Rebekah Angove, Rachel Dungan, and Holly Peay provide four recommendations for the future of patient engagement science. "...The national effort to improve engagement practices will be guided by a growing body of strong research, which tests and clarifies the relationships between engagement activities and research outcomes. This will, in turn, contribute to improvements in the quality of clinical care and the improvement of observed health outcomes.” Click here to read the blog.
7. Patient EngagementHIT: Individualized Care Key for Employer-Sponsored Wellness Programs
In an article for Patient EngagementHIT, Sara Heath writes that employers are falling short on offering comprehensive and useful patient wellness programs, according to a recent study. "Instead of hosting broad, company-wide initiatives, employers may consider more individualized wellness programming. Eighty-four percent of respondents said their employer wellness programs are one-size-fits-all, meaning they pertain to nearly the entire company patient population. These types of programs may be helpful for creating a culture of health, but are often of little use for patients who want to make relevant changes to their lifestyles. Fifty-six percent of employees said they have received irrelevant health and wellness information, which in turn wastes their time, the survey added. However, 80 percent of employees said receiving more personalized health information and recommendations would motivate healthy behavior change." Click here to read the article.
8. 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.
9. 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: 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.
10. ICER Studies: 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:
- Spinal Muscular Atrophy: 3/7/2019 Meeting: New England CEPAC to deliberate and vote on ICER's report on treatments for SMA.
- Depression: Model Advancement Plan: 2/4/2019. Meeting 5/23/2019: Midwest CEPAC to review evidence on esketamine as a therapy for treatment-resistant depression.
- Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis. Research Protocol: 1/14/2019 . Model Advancement plan: 1/29/2019. Meeting 5/23/2019: Midwest CEPAC to review ICER's assessment of siponimod (Novartis) for secondary progressive multiple sclerosis.
- Peanut Allergy: Stakeholder list available. Revised Scoping Document: 12/20/2018. 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: Draft protocol available.
11. Upcoming Events and Webinars
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.
Health Affairs Briefing: Patients As Consumers
March 5, 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.
12. 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.
13. AHRQ Effective Program Updates
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.
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.