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.

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. PIPC Submits Comment on RFI for Reducing Regulatory Burdens, click here to view.
3. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? click here to complete the survey.
4. Healthcare Informatics: Pilot Projects Seek to Move Patient-Centered Research Outcomes Into Clinical Decision Support, click here to read the article.
5. Lupus: FDA Patient-Focused Drug Development Meeting, click here to register
6. National Organization of Nurses with Disabilities on Need for Patient Voices, click here to view their perspectives.
7. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
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. Save the Date: PIPC Hosts Panel Discussion on QALYs (July 21), click here for details, and here to RSVP.
2. PIPC Publishes White Paper on ‘Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value,’ click here to view.
3. STAT: Missing from the Debate Over Health Care: Patients’ Voices, click here to read the article.
4. Experts Convene for Summit on Cancer Moonshot Initiative, see details below.
5. Will Value Assessment Frameworks Promote Health Value and Access for Veterans?, click here to view the blog post.
6. AARP Announces ‘Community Challenge’ Grants, click here for more information and here to submit an application.
7. Lupus: FDA 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 Publishes Brief on Uses and Misuses of the QALY - Ethical Issues and Alternative Measures of Value, click here to view.
2. ICER’s Revised Value Assessment Framework released, click here to read the NPC blog.  
3. PIPC Comments on LAN's Updated APM Framework, click here to read the letter.
4. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
5. Ipsen: PIPC Participates in Dialogue for Patient Care, click here to view the report.
6. Lupus: Patient-Focused Drug Development Meeting, click here to register.
7. Health Affairs: At Drug Hearing, Senators Discuss Meanings Of Price And Value—And Debate Health Reform, click here to view 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.

In This Week’s Issue:
 
1. PIPC Comments on LAN's Updated APM Framework, click here to read the letter.
2. PIPC Patient Blog: Andrew Sperling, National Alliance on Mental Illness, click here to read the blog.
3. Oncology Leaders to Convene in D.C. for Turning the Tide Against Cancer 2017 National Conference, click here to register.
4. Ipsen: PIPC Participates in Dialogue for Patient Care, click here to view the report.
5. Lupus: Patient-Focused Drug Development Meeting, c
lick here to register!
6. Morning Consult: Reform Prescription Drug Labeling to Benefit Patients and Their Doctors, click here to read he op-ed.
7. Drug Topics: The Future of Oncology Treatment Is Value Assessment, 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.

In This Week’s Issue:
 
1. PIPC Patient Blog: Andrew Sperling, National Alliance on Mental Illness, click hereto read the blog.
2. Chairman Coelho: Patient Engagement: The CHRONIC Care Act, CMMI, and the Future, click here to read the blog.
3. PIPC Outlines Concerns with ISPOR's Value Assessment Frameworks Initiative,click here to read the letter.
4. Healthcare Finance: Racial and ethnic disparities remain consistent at Veterans Health Administration patient-centered medical homes, click here to read the article.
5. AMJC Video: Dr. L. Patrick James Discusses the Continued Move Toward Value-Based Payments, click here to watch the video.
6. PhRMA: Modernizing FDA Regulations to Advance a Value-Driven Health Care System, click here to read the article. 
7. Modern Healthcare: House Lawmakers Ask How Medicare Can Manage Complex Patients Better, click here to read the article.   
8. Hepatitis C Mentor and Support Group Releases Psychological Survey Results,click here to read the report.
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.

​NAMI is proud to be part of the movement to assess value of health care treatments and interventions, and to build an infrastructure for patient engagement throughout the healthcare system, particularly in the shift to value-based payment and delivery models. However, we think it’s crucial that any efforts to measure and assess value, incorporate the patient perspective, and consistently and meaningfully engage patients along the way.

PIPC Chairman Tony Coelho recently penned a blog for HuffPost, complimenting steps that are being taken that show progress in shifting toward value-based healthcare decisions. “While a tremendous amount of work remains to be done, policymakers took two steps recently that show progress is possible. One was approval by the Senate Finance Committee of the CHRONIC Care Act, a bipartisan bill (yes, they still exist!) whose success is attributable to significant stakeholder engagement and that, if enacted, will help to meet real patient needs.”