 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.”
In This Week’s Issue:
1. Chairman Coelho: Patient Engagement: The CHRONIC Care Act, CMMI, and the Future, click here to read the blog. 2. PIPC Outlines Concerns with ISPOR's Value Assessment Frameworks Initiative, click here to read the letter. 3. Apply now! CMS Seeking Nominations for Quality Measurement Development TEP, click here to apply. 4. AMJC Video: Why Focus on Value Will Persist Regardless of Changing Legislation, click here to watch the video. 5. Hogan Lovells -- Measures of Success: How Value-Based Pricing May Change the Pharmaceutical Industry, click here to read the article. 6. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability Click here to apply. 7. Upcoming Events and Webinars, see details below 8. Medical Journal Articles, see details below. 9. AHRQ Effective Program Updates, see details below. In This Week’s Issue:
1. PIPC Chairman Coelho Outlines Concerns with ISPOR’s Value Assessment Frameworks Initiative, click here to read the letter. 2. Vox: Trump wants to cut health research. This Republican won’t let him, click here to read the article. 3. Health Affairs: Measuring Value Based On What Matters To Patients: A New Value Assessment Framework, click here to read the blog. 4. AMJC Video: Tailored Approach to Value Assessment Is Necessary, click here to watch the video. 5. PharmTech: Value-Based Pricing Viewed as Most Potentially Transformative Factor Facing the Industry, click here to read the article. 6. Clinical Leader: Patient Centricity In Clinical Trials: Lessons Learned From Big Pharma, click here to read the article. 7. Article: Patient-Centered Digital Education Improves Adherence Rates, Survival for Patients with Lung Cancer, 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. Washington Post: She Thought She’d Pulled Hip Muscles, But Six Doctors Couldn’t Diagnose Her Pain, Click here to read the article. 2. Health Affairs: A Consumer-Centered Framework For Quality: How Do We Get There From Here? Click here to read the blog. 3. PCORnetJoins Forces with Sentinel to Link Data for More Robust Public Health Research, Click here to read the press release. 4. BioPharma DIVE: Can Value-Based Deals Work If Patients Don't Take the Drug? Click here to read the article. 5. Morning Consult: Senate Panel Approves Bill Revamping Medicare for Chronically Ill Patients. Click here to read the article. 6. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, Click here to apply. 7. Upcoming Events and Webinars, see details below 8. Medical Journal Articles, see details below. 9. AHRQ Effective Program Updates, see details below. In This Week’s Issue:
1. Avalere and FasterCures Release Patient-Perspective Value Framework to Incorporate Patient Preferences into Healthcare Treatment Decisions, click here to read the press release. 2. PCORI to Offer Up to $41 Million for New Patient-Centered Comparative Clinical Effectiveness Research on Opioids, Advanced Illnesses, click here to read the press release. 3. AMJC: Finding Value of Life-Saving Therapies Can Reveal What Matters to Patients, click here to read the article. 4. Health Affairs: The Case For Patient-Centered Assessment Of Value, click here to read the article. 5. New York Times: New Veterans Affairs Chief: A Hands-On, Risk-Taking ‘Standout’, click here to read the article. 6. The Upshot: We’re Bad at Death. Can We Talk? Click here to read the blog. 7. NPC: How Can We Address Barriers to Accessing Needed Care? Click here to read the article. 8. Healthcare Informatics: Former Minnesota CIO to Head AHRQ, click here to read the article. 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:
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