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. 

In This Week’s Issue:
 
1. PIPC Patient Blog: ‘Value’ Measures for Rationing Healthcare Devalue My Life, click here to read the blog.  
2. PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to dgleason@pipcpatients.org.
3. CARE About Fibroids Publishes Report on Uterine Fibroids in the U.S., click here to read the white paper.   
4. Tell Insurers: 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. NPAF Policy Consortium: Talking About the Cost of Care in Shared Decision Making — Patient and Provider Perspective, click here to register.
7. Mental Health America: 2019 Call for Proposals is Now Open, click here for details.
8. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
9. Job Opening: Policy and Advocacy Coordinator for the Christopher and Dana Reeve Foundation, click here for details.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below. 

By Rosie Bartel
​
Nine years ago, I had a routine knee replacement surgery. Instead of recovering and getting back on my feet, however, I contracted a surgical infection which took my right leg, hip, and part of my pelvic bone. My doctors told me I should have died. One said I had just a 30 percent chance of survival. But I’m a fighter. My life changed, and I am now confined to a wheelchair — but my passion for life didn’t change. I began fighting for the rights of people like myself and it has been the most meaningful work of my life.

In This Week’s Issue:
 
1. PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to dgleason@pipcpatients.org.
2. IHP: Azar Brings Back Mandatory Demos, Including Those CMS Canceled, see details below.
3. HealthLeaders: Tapping Patient Engagement to Reduce Diagnostic Errors, click here to read the article.  
4. Tell Insurers: 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. Register: PQA’s Social Determinants of Health Forum, click here to register.
7. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
8. Mental Health America: 2019 Call for Proposals is Now Open, click here for details.
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
10. Job Opening: Policy and Advocacy Coordinator for the Christopher and Dana Reeve Foundation, click here for details.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below. 

In This Week’s Issue:
 
1. PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to dgleason@pipcpatients.org.
2. PIPC Patient Blog: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People, click here to read the blog. 
3. MedPage Today: Outcomes Research Group Likely to Be Reauthorized, click here to read the article
4. Briefing: Value Assessment and Patient Engagement — Why Patient Voices Matter,click here to RSVP.
5. Tell Insurers: Don't Discriminate on Care, click here to view.
6. Aimed Alliance Report: Putting Profits Before Patients — Provider Perspectives on Health Insurance Barriers That Harm Patients, click here to read the report.   
7. IFAA Hosts Inaugural ACTion Council Meeting, click here to learn more.
8. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply. 
9. Register: PQA’s Social Determinants of Health Forum, click here to register.
10. The PCORI Blog: Partnering to Help People with Obesity Better Understand Their Surgical Options, click here to read the blog.   
11. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
12. Mental Health America: 2019 Call for Proposals is Now Open, click here for details.
13. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
14. Upcoming Events and Webinars, see details below.
15. Medical Journal Articles, see details below.
16. AHRQ Effective Program Updates, see details below. 

This was originally published as an October 29, 2018 post in Health Affairs Blog.

By Ari Ne'eman 

​As policymakers around the world seek to manage rising drug expenditures, people with disabilities find ourselves increasingly concerned by the potential harms that cost-cutting measures may bring. The growing fight between health care purchasers and drug manufacturers offers yet another instance where people with disabilities and chronic conditions may find themselves caught in the cross-fire.

In This Week’s Issue:
 
1. Health Affairs: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People, click here to read the blog.
2. 2018 PCORI Annual Meeting, see details below.
3.PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization,click here to access a recording and slides. 
4. Tell Insurers: Don't Discriminate on Care, click here to view.
5. Register: PQA’s Social Determinants of Health Forum, click here to register
6. STAT: Turning the tables, people with mental illness share what they want scientists to study, click here read the article
7. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine, see details below.
8. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
9. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
10. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply. 
11. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, 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. 

​The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to establish priorities and set an agenda for the conduct of comparative clinical effectiveness research (CER). Its Board of Governors is selected by the Government Accountability Office (GAO), and includes three designated seats for representatives of patients and consumers.  GAO concluded in a March 2018 report that PCORI is fulfilling its Congressional mandate to generate evidence that patients and those who care for them can use to make better-informed healthcare decisions. Following the National Academy of Medicine's definition of CER, PCORI invested nearly $2.4 billion in more than 600 patient-centered CER studies and related projects that support CER to date. PCORI’s Methodology Committee, also appointed by the GAO, provides guidance to the PCORI Board of Governors and its contract researchers about the appropriate use of CER methods, methodological standards, as well as establishing priorities to address gaps in research methods or their application.

In This Week’s Issue:
 
1. Tell Insurers: Don't Discriminate on Care, click here to view.
2. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments, click here to read the report.
3. PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization
4. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine, see details below.
5. Op-ed: Looking to the future of patient-centered cancer research and treatment, click here to read the op-ed
6. Watch: Research on Voluntary Patient-Centered Opioid Tapering, click here to watch the video. 
7. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
8. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
9. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply. 
10. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
11. 2018 PCORI Annual Meeting, click here for details.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below. 

In This Week’s Issue:
 
1. Tell Insurers: Don't Discriminate on Care, click here to view.
2. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments, click here to read the report.
3. Op-Ed: One-Size-Fits-All Cost-Based Formulas: Rationing Care for Cancer Patients, Click here to read the op-ed.  
4. Patient EngagementHIT: Record Copying Fees, Admin Hurdles Harm Patient Data Access, click here to read the article.
5. The PCORI Blog: PCORI at Age Eight – Progress, Impact, and More to Do, click here to read the blog.
6. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
7. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
8. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply. 
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit, click here to register.
11. 2018 PCORI Annual Meeting, click here for details.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.