In This Week’s Issue:
 
1. CMS Releases RFI on New Direction for CMMI, click here to view.
2. Lupus: Patient-Focused Drug Development Meeting, click here to watch the webcast.
3. The PCORI Blog: What 30 Years of Living with Pain Taught Me about Advancing Research, see details below.
4. Healthcare Informatics: New Patient-Centered Studies Take Advantage of PCORnet Infrastructure, 
5. Morning Consult: Evidence About Effectiveness Offers Hope for Reversing Opioid Crisis, click here to read the op-ed. 
6. HealthITAnalytics: CMS Requests Input on “New Direction” in Patient-Centered Care, click here to read the article.
7. CMS Measure Development Education and Outreach Series, see details below.
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
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. PIPC Submits Letter to CMS on Rule Regarding Medicare Shared Savings Requirements, click here to read letter.  
2. KMWorld: Creating a Knowledge Infrastructure for the ‘Learning Health System,’ click here to read the article
3. PatientEngagementHIT: What is the Patient Activation Measure in Patient-Centered Care? Click here to read the article.
4. mHealthIntelligence: PCORI Eyes mHealth, Telehealth Treatments for Multiple Sclerosis, click here to read the article. 
5. HealthInnovation.org: Research Roundup: Patient Engagement Pitfalls and Possibilities, click here to read the article.
6. NHC Webinar: Value Frameworks and Assessment: What do Patient Groups Need to Know? Click here to register.
7. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies, click here to RSVP..
8. CMS Measure Development Education and Outreach Series, see details below.
9. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
10. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
11. Lupus: Patient-Focused Drug Development Meeting, click here to register!
12. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
13. Upcoming Events and Webinars, see details below
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.

In This Week’s Issue:
 
1. PIPC Submits Letter to CMS on Rule Regarding Medicare Shared Savings Requirements, see details below.  
2. PIPC Chairman Tony Coelho in RealClearHealth: Prioritizing Health Care: Patient or Payer First?, click here to view the op-ed.
3. PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities, click here to view the blog post.
4. Washington Post: Why I hate buying a new wheelchair, click here to read the article.
5. NASEM Health and Medicine: Communicating Clearly About Medicines — Proceedings of a Workshop, click here to read the publication.
6. NHC Webinar: Value Frameworks and Assessment: What do Patient Groups Need to Know? Click here to register.
7. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies, see details below.
8. CMS Measure Development Education and Outreach Series, see details below.
9. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
10. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
11. Lupus: Patient-Focused Drug Development Meeting, click here to register!
12. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
13. Upcoming Events and Webinars, see details below
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below

In This Week’s Issue:
 
1. PIPC Chairman Tony Coelho in RealClearHealth: Prioritizing Health Care: Patient or Payer First?, click here to view the op-ed.
2. PIPC Patient Blog: Policymakers Can't Turn a Blind Eye to Patients With Disabilities, click here to view the blog post.
3. Washington Post: My Son Has Autism. Discrimination Almost Cost Him His Life, click here to view the article
4. NQF: Measuring What Matters to Patients: Integrating the Patient Experience into Quality Measures, click here to watch the webinar.
5. RSVP: Addressing America's Opioid Problem: The Need for Evidence-Based Strategies, see details below.
6. CMS Measure Development Education and Outreach Series, see details below.
7. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
8. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
9. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
10. Lupus: Patient-Focused Drug Development Meeting, click here to register!
11. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
12. Upcoming Events and Webinars, see details below
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.

By: Janni Lehrer-Stein
​​
I learned recently, many weeks after its early June announcement, that the Institute for Clinical Economic Review (ICER) based in Boston will develop a report assessing the cost effectiveness of a new cure for blindness, a gene therapy for vision loss associated with a form of retinal disease. By the time I learned about it, the comment period had closed to allow stakeholders to share key information relevant to the first phase of development of the evidence report. While ICER said it would contact key patient groups and clinical experts to gain further insights on the patient perspective and clinical context of this new treatment option, I had never heard about it when I could have had a voice in the initial phase of the study.  It’s not clear how hard they worked to get the patient perspective, and I certainly have a perspective to share

In an op-ed published in RealClearHealth, PIPC Chairman Tony Coelho examines the limitations of quality-adjusted-life-years (QALYs) and how this tools for value-assessment may systematically discriminate against patients and individuals with disabilities. As he writes, "Underlying all this is the key question we must ask ourselves when considering any policy related to the payment and delivery of health care: for whom are we creating this policy? Who is the ultimate stakeholder? If the answer is not the people served by health systems -- patients and people with disabilities -- then we have a serious problem."