In This Week’s Issue:
 
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.  

By: Elizabeth Franklin 

The use of the quality adjusted life year, or QALY, is widespread in research, health economics, and value assessment. However, the QALY is not without controversy as has been noted many times in the PIPC blog. Health economics and outcomes researchers, policy makers, and advocates have long debated the appropriateness and ethics of the QALY. Governmental agencies, managed care organizations, and healthcare payers routinely utilize the QALY in their decision making. However, one voice that has been glaringly absent from this debate is the most important voice: patients. 

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.

In This Week’s Issue:
 
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. 

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.  

In This Week’s Issue:
 
1. Health Affairs: To Get More Bang For Your Health-Care Buck, Invest In Innovation, click here to read the blog
2. PAVE Blog: Putting Our Guard Down — Engaging Multiple Stakeholders To Define Value In Healthcare, click here to read the blog.
3. PMC Webinar: Moving Beyond Population Averages — Patient Principles for a Personalized Medicine Research Agenda, see details below. 
4. An Update From the Friends of PCORI Reauthorization Coalition, see details below. 
5. The PCORI Blog: Making Research More Patient Centered, One Application at a Time, click here to read the blog.  
6. AcademyHealth Blog: Engagement Science — Factors Fueling the Need for Better Defined Engagement, click here to read the blog.
7. PIPC: Don't Discriminate on Care, click here to view.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.

In This Week’s Issue:
​
1. Forbes: A QALY Is A QALY Is A QALY, Or Is It? Click here to read the column. 
2. Op-ed: A little known group is making decisions about which Orange County lives are worth living? Click here to read the op-ed.
3. Morning Consult: Emancipating Data — Science in the Open Is Key to Understanding Value, click here to read the op-ed 
4. Health Affairs: Putting Patients’ Goals And Needs At The Center Of Care — How Can We Do Better? Click here to read the blog.
5. Chairman Coelho in San Jose Mercury News: Trump Medicare drug plan would hurt most vulnerable, click here to read the op-ed
6. PIPC Submits Comment to CMS on Proposed International Pricing Index, click here to read the letter.
7. PIPC: Don't Discriminate on Care, click here to view.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below. 

In This Week’s Issue:
 
1. Chairman Coelho in San Jose Mercury News: Trump Medicare drug plan would hurt most vulnerable, click here to read the op-ed.
2. Friends of PCORI Reauthorization Event, see details below. 
3. PIPC Submits Comment Letter to CMS on Proposed International Pricing Index, click here to read the letter. 
4. Chairman's Corner: ICER Misses the Mark Again, click here to read the blog.
5. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards, click here to read more.  
6. PIPC: Don't Discriminate on Care, click here to view.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view. 
8. Patient EngagementHIT: Rural Hospital Travel Times Increase, Hamper Patient Care Access, click here to read the article. 
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below. 

This post originally appeared as an op-ed in the San Jose Mercury News on January 2, 2019. 

The Trump administration proposed an “international pricing index” intended to reduce drug spending under Medicare Part B by replicating the rates negotiated in other countries. It seems like a commonsense solution: Why should America pay more than other countries?The truth, however, is more complicated: lower foreign prices emerge from one-size-fits-all health care systems that drive patients to use certain drugs while refusing others, irrespective of individual needs.

In This Week’s Issue:
 
1. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards, click here to read more.  
2. Friends of PCORI Reauthorization Event, see details below. 
3. Chairman's Corner: ICER Misses the Mark Again, click here to read the blog.
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? See below for details.
6. IFAA Hosts Inaugural ACTion Council meeting, see details below. 
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below. 

Recently, the Institute for Clinical Economic Review (ICER) announced that their future reports will incorporate more prominently “a calculation of the Equal Value of Life Years Gained (evLYG).”  For over a decade, representatives of patients and people with disabilities have communicated to ICER that QALYs are fundamentally flawed and inherently discriminatory. The QALY was developed as a tool to make one-size-fits-all decisions, not facilitate patient-centered health care.

In This Week’s Issue:
 
1. PIPC: Don't Discriminate on Care, click here to view.
2. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
3. MedPage Today: Why do Patients Withhold Information? Click here to read the article.
4. Patient EngagementHIT: Low Patient Portal Use Sparks Calls for Patient Tech Education, click here to read the article. 
5. CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign, click here to share your story.
6. PCORI Blog: Engaging Parents to Help Reduce Medical Errors in the Hospital, click here to read the blog.
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below. 

In This Week’s Issue:
 
1. Join This Thursday For PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to dgleason@pipcpatients.org.
2. PIPC: Don't Discriminate on Care, click here to view.
3. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
4. CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign, click here to share your story.
5. NEJM: Complementary Approaches to Patient Engagement in Patient-Centered Outcomes Research, Click here to read the article.
6. Fierce Healthcare: Want to make patients better partners in their care? Physicians group offers 4 guiding principles, click here to read the article. 
7. Blog: “High Value, Low Wastage Research” Is More Than Just a Catchphrase Now
8. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below. 

In This Week’s Issue:
 
1. AJMC: Patient Perspectives Must Meaningfully Inform Healthcare Value Measurement, click here to read the article.
2. PIPC Patient Blog: ‘Value’ Measures for Rationing Healthcare Devalue My Life, click here to read the blog.  
3. PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to dgleason@pipcpatients.org.
4. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
5. NPAF Policy Consortium: Talking About the Cost of Care in Shared Decision Making — Patient and Provider Perspective, click here to register.
6. MedCity News: This is what empowered patients desire on their journey, click here to read the article. 
7. Patient EngagementHIT: Lacking Protocols Hit VHA Clinic Environment, click here to read the article. 
8. Tell Insurers: Don't Discriminate on Care, click here to view.
9. Mental Health America: 2019 Call for Proposals is Now Open, click here for details.
10. CARE About Fibroids Publishes Report on Uterine Fibroids in the U.S., click here to read the white paper.   
11. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.