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 Effectiveness 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."

In This Week’s Issue:
 
1. PIPC Patient Blog: Patients are Changing the Conversation about Health Research, click here to read the blog.
2. PIPC Patient Blog: Better Information Means Better-Informed Treatment Choices, click here to read the blog.
3. PCORI Blog: A Clinician's View: Patient-Centered Research Is the Path to Better Health Care, click here to read the blog.
4. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
5. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
6. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
7. Lupus: Patient-Focused Drug Development Meeting, click here to register!
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 Patient Blog: Better Information Means Better-Informed Treatment Choices, click here to read the blog.
2. Patient Input Needed (DEADLINE TODAY @ 5:00) CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
3. Phil on the Hill: The Value of Comparative Effectiveness Research, click here to read the blog.
4. PCORI Video: Adding Value to Research, click here to watch the video.
5. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
6. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
7. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
8. Lupus: Patient-Focused Drug Development Meeting, click here to register!
9. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
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. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
2. PCORI Video: Hearing the Patient Voice and Improving Care, click here to watch the video.
3. AJMC: From “Magic Bullets” to Precision Medicine—Ensuring More Patient-Centered Cancer Care, see details below
4. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
5. Patient Input Needed! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
6. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
7. Lupus: Patient-Focused Drug Development Meeting, click here to register!
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. Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value, click here to read the summary. 
2. BPC: PIPC on Panel on Future of Comparative Effectiveness Research, click here to view the webcast.
3. PCORI VIDEO: Meeting Patients on Their Terms, click here to watch the video.
4. Register Now! UCP’s Speak for Yourself Workshop, click here to RSVP.
5. DPAC: Says Who — Who Is Involved in Policy-Making Regarding Diabetes? Click here to read more.
6. Patients - Apply Now! Technical Expert Panel (TEP) on Quality Measure Development: Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures, click here to apply.
7. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
8. Patient Input Needed! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
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.

In This Week’s Issue:
 
1. Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value, click here to read the summary. 
2. BPC: PIPC on Panel on Future of Comparative Effectiveness Research, click here to view the webcast.
3. Tuesdays with Liz: PIPC Executive Director Sara van Geertruyden Discusses Importance of Patient-Centered Care, click here to watch the video. 
4. PCORI Video: It All Started with Patient-Centeredness, click here  to watch the video.
5. Mass Device: FDA sets inaugural meeting of first-ever Patient Engagement Advisory Committee, click here to read the article.
6. AMJC Video: Dr. Clifford Goodman — A Look at the Present and Future of Value Frameworks, click here to watch the video. 
7. APPLY NOW! ONC Seeks Applications for Health Information Technology Advisory Committee, click here for additional details.
8. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
9. Comment Now! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
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. Register Now: PIPC on BPC Panel on The Future of Comparative Effectiveness Research, click here to RSVP.
2. PIPC Patient Blog: Megan O’Boyle, click here to read the blog. 
3. Tuesdays with Liz: PIPC Executive Director Sara van Geertruyden Discusses Importance of Patient-Centered Care, click here to watch the video. 
4. WSJ: The Smart Medicine Solution to the Healthcare Crisis, click here to read the op-ed.  
5. Clinical Psychiatry News: Engage Patients, Clinicians as Partners in Research, click here to read the article.
6. BMJ: What Your Patient is Thinking — Learning Together, click here to read the article.
7. New PCORI Initiative to Advance Shared Decision Making, click here to read the press release.
8. Comment Now! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
9. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
10. Lupus: FDA 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.

I’m the mother of a wonderful girl named Shannon, who has a rare genetic condition called Phelan-McDermid syndrome. For years I steered clear of research information about her condition and focused on the daily challenges of meeting her needs. It never occurred to me that beyond being Shannon’s mom and caregiver I would play another vital role – as part of the research community helping her and others like her live a better life. 

In This Week’s Issue:
 
1. Save the Date: PIPC Hosts Panel Discussion on QALYs (July 21), click here for details, and here to RSVP.
2. Register Now: PIPC on BPC Panel on The Future of Comparative Effectiveness Research, click here to RSVP.
3. PIPC Submits Comments for Reducing Regulatory Burden, click here to view.
4. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
5. PCPCC: The Impact of Primary Care Practice Transformation on Cost, Quality, and Utilization, click here to read the report.
6. Lupus: FDA Patient-Focused Drug Development Meeting, click here to register.
7. MedPage Today: Under the Radar — PCORI Helps Patients Make Good Decisions, click here to read the article.
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.