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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Value Our Health
    • International
    • Where We Stand
    • Value Assessment Frameworks
    • Engaging Patients in Value-Based Payment
    • Patient-Centeredness in Research
  • Resources
    • Advocacy
    • Letters and Comments
    • PCORI Meeting Transcripts
    • Polling
    • Roundtables
    • White Papers
  • Blog
    • PIPC Patients' Blog
    • Chairman's Corner
    • PIPC Weekly Update
    • The Data Mine
  • Newsroom
    • PIPC in the News
    • Press Releases
    • Open Letter: We Deserve a Voice
  • Events
    • PIPC Forum 2022
    • Discrimination & Health Care
    • C & GT Webinar
    • ICER COVID Webinar
    • Value Our Health Briefing
    • QALY Briefing
    • QALY Panel
    • Past Webinars >
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
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The PIPC Blog

PIPC Patient Blog: Letitia Browne-James

2/27/2015

 
Picture
​My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped  to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed


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PIPC Weekly Update - February 23, 2015

2/23/2015

 
In This Week’s Issue:
1. PIPC to Comment on the Innovation for Healthier Americans Report, click here to view the full comments after 2pm.  
2. PCORI Submits Comments to E&C Regarding 21st Century Cures, click here for details. 
3. Healthcare News: Patient questionnaire can help measure disability risk following surgery, click here to view the full article.
4. Healthcare Design: Pushing Beyond Patient-Centered Design, click here to view the full interview. 
5. Interview: PCORI Perspectives on Pragmatic Research and Patient Engagement, click here to view the full video. 
6. Health IT Analytics: Are Standardized Clinical Pathways Stymying Drug Innovation? Click here to view the full article. 
7. The Scope: Health Care Insider: Emerging Trends in Evidence-Based Medicine, click here to listen to the full podcast. 
8. The Wall Street Journal: Three Ways to Create Smarter Health-Care Consumers, click here to view the full post (subscription required).
9. Medical Journal Articles, see below for details.  
10. AHRQ Effective Program Updates, see below for details.  

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PCORI Comments on 21st Century Cures Discussion Draft

2/19/2015

 
Today, the Patient-Centered Outcomes Research Institute (PCORI) submitted formal comments to Representatives Fred Upton (R-MI) and  Diana DeGette (D-CO) of the House Energy and Commerce Committee.  "[PCORI] applauds the efforts of the House Energy and Commerce Committee to forge a bipartisan approach to speeding development of effective new therapies and to involving patients in the process. PCORI has proven that involving patients leads to better research questions and better research post-approval. We agree that engaging patients will improve technology development research, and PCORI stands ready to help.”  PCORI offered in their comments to be helpful in guiding the collection and methodological work around gathering patient data, advocated to support CER studies after treatments have been approved by the FDA, and advocated to build upon the foundation of PCORnet and its work to modernize clinical trials.  

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PIPC Weekly Update - Feburary 17, 2015

2/17/2015

 
In This Week’s Issue: 
1. PIPC Comments on Energy and Commerce Committee's '21st Century Cures' Discussion Draft, click here to view the letter. 
2. Avalere White Paper: Facilitating a Transition to Using PROs to Measure Performance, click here to read the White Paper. 
3. Reminder: PCORI Dissemination Advisory Panel Applications Due February 23, click here for more details. 
4. The Pink Sheet: Life After White Oak: Hamburg's Predecessors Offer Glimpse At Where Pharma Might See Her Again, click here to view the article (subscription required). 
5. PCORI Blog: How Clinicians Are Helping to Shape PCORI-Funded Research, click here to view the blog post.  
6. The Pink Sheet: PCORI Hep C Drug Trials Will Gather Long-Term Outcomes Data, click here to view the article (subscription required). 
7. Medical Journal Articles, see below for details. 
8. AHRQ Effective Program Updates, see below for details. 

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PIPC Weekly Update - Feburary 9, 2015

2/9/2015

 
In This Week's Issue:
1. Inside Health Policy: PCORI Announces Funding To Compare Hep C Rx, Diagnostics, click hereto view the full article (subscription required).
2. PCORI Blogs: Funding, Heart Disease, Subject Protection, Missing Data, see below for details.
3. Brookings: How Hepatitis C is Shining a Light on Critical Gaps in Payment Reform, click here to view the full article.
4. Boston Globe: Portal Promotes Patient-Centered Multiple Sclerosis Research, click here to view the full article.
5. Brookings: The Significance of President Obama's Precision Medicine Initiative, click here to view the full article.
6. CEA: New Paper: Medicare Is Scrutinizing Evidence More Tightly for National Coverage Determinations, click here to view the full post.
7. Medical Journal Articles, see below for details.
8. AHRQ Effective Program Updates, see below for details.

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PIPC Weekly Update - February 2, 2015

2/2/2015

 
In This Week’s Issue: 
1. PIPC Responds to HHS Announcement on Medicare and Value-Driven Care, click here to view the statement.
2. E&C Releases 21st Century Cures Draft; Senate HELP Releases Analogous Report on Medical Innovation,click here and here for details.
3. Precision Medicine Initiative, click here to view.
4. Health Care Transformation Task Force Improving Commercial, Medicaid and Medicare Accountable Care Organizations, click here to view the full document.
5. WSJ: What is Government’s Role in Comparing Medical Treatments?  Click here to view the blog.
6. PCORI: Funding Research on How Best to Communicate and Disseminate Research Findings, click here to view the full blog.
7. PCORI Board Approves New Advisory Panel and New PCORnet Demonstration Project, click here to view the full release.
8. Nominations Open for Members of the New England Comparative Effectiveness Public Advisory Council (CEPAC), click here for more information and to apply before February 23.
9. Medical Journal Articles, see below for details.
10. AHRQ Effective Program Updates, see below for details.

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