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    • QALY Briefing
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The PIPC Blog

PIPC Weekly Update: May 7, 2018

5/7/2018

 
Picture
In This Week’s Issue:
  
1. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
2. PCORI’s Influence on the Culture of Research, click here to read the blog.
3. The Hill: NIH Launches Massive New Personalized Research Project, click here to read the article.
4. The Health Care Blog: Seeing Value From the Patient's Perspective, click here to read the blog.  
5. Inside Philanthropy: Grants to Tackle a Difficult—But Unavoidable—Issue: End-of-Life Care, click here to read the article. 
6. Upcoming Events and Webinars, see details below.
7. Medical Journal Articles, see details below.
8. AHRQ Effective Program Updates, see details below

1. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
 
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register. 
 
2. PCORI’s Influence on the Culture of Research
 
Ninma Fearon, Laura Forsythe, Andrea Heckert, and Michele J. Orza discuss the cultural impact of PCORI-funded research in a post for The PCORI Blog “...What we have learned is that our focus on research done differently is influencing others to give patients a more active role in their work. We also have found repeatedly that awardees who do PCORI-funded projects sustain their commitment to patient-centeredness beyond their initial funding. ‘It is hard to imagine ever doing another study where I don't start out with patients and families first,’ says Elizabeth Cox, MD, PhD, principal investigator of a PCORI-funded study at the University of Wisconsin, Madison.”  Click here to read the blog. 
 
3. The Hill: NIH Launches Massive New Personalized Research Project
 
In an article for The Hill, Nathaniel Weixel reports on a massive new research initiative at NIH aimed at revolutionizing the study of personalized medical cures. “...‘All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine,’ [HHS] Secretary Alex Azar said in a statement. ‘NIH's unprecedented effort will lay the scientific foundation for a new era of personalized, highly effective health care.’ The initiative is funded from annual appropriations. The 21st Century Cures Act, which was signed into law in December 2016, authorized a total of $1.5 billion over 10 years for the program.” Click here to read the article. 
 
4. The Health Care Blog: Seeing Value From the Patient's Perspective
 
Timothy Hoff notes that value in health care should focus on enhancing the patient experience in a post forThe Health Care Blog. “...In measuring value through the heavy use of standardized performance measures to judge their own worth to those paying them, doctors and hospitals work harder on comparing themselves to each other, which leads to gaming incentive systems that possess too many superficial and self-reported quality measures It also means providers spend less time measuring how they are meeting our unique needs, wants, and preferences as individual patients. This makes our health care feel more impersonal.” Click here to read the blog. 
 
5. Inside Philanthropy: Grants to Tackle a Difficult—But Unavoidable—Issue: End-of-Life Care
 
In an article for Inside Philanthropy, Paul Karon reports on PCORI-funded grants that are researching end-of-life-care. “...Patients, too, have to play an active role in their care. Both the healthcare system and patients have to be equally informed when the time comes. It's very difficult and often unhelpful for laypeople to interpret results of individual research studies and apply them to their own health situations. Patient-centered research gets directly into the larger questions of what sort of care is really going to help. PCORI shouldn't be alone in this area, especially when it comes to knotty end-of-life issues.” Click here to read the article. 
 
6. Upcoming Events and Webinars 
          
Advisory Panel on Clinical Trials Spring 2018 Meeting
May 7, 2018
Click here for details
 
May 2018 Health Affairs Issue Briefing: Precision Medicine
May 8, 2018
Click here for details
 
Webinar: Connecting the Dots in the Real World: A Future Perspective of Real World Evidence
May 8, 2018
Click here for details
 
NPC @ ISPOR 23rd Annual International Meeting
May 19-23, 2018
Click here for details
 
PCORI Online: Progress Report Webinar
May 21, 2018
Click here for details
 
PCORI Board of Governors Meeting
May 22, 2018
Click here for details
 
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
 
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
 
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
 
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
 
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
 
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
 
7. Medical Journal Articles
 
Nursing Research, CER, PICO and PCORI, click here to view. 
 
Comment & Response: Measures of the Burden of Medical Expenses, click here to view. 
 
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view. 
 
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
 
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view. 
 
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
 
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view. 
 
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view. 
 
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view. 
 
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view. 
 
PCORnet's Collaborative Research Groups, click here to view. 
 
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view. 
 
Comparative Effectiveness and Patient-Centered Outcomes Research: Enhancing Uptake and Use by Patients, Clinicians and Payers, click here to view. 
 
Comparative Effectiveness Research Requires Competitive Effectiveness, click here to view. 
 
What Parents of Children With Complex Medical Conditions Want Their Child’s Physicians to Understand, click here to view. 
 
PCORnet's Collaborative Research Groups, click here to view. 
   
8. AHRQ Effective Program Updates
 
Role of Immunotherapy in the Treatment of Asthma, click here to view. 
 
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
 
Library of Common Data Definitions: Asthma, click here to view. 
 
Patient or Participant Generated Registries, click here to view. 
 
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view. 
 
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view. 
 
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view. 
 
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view. 
 
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view. 
 
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view. 
 
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view. 
 
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
 
Harms of First-Line Depression Treatment in Older Adults, click here to view. 
 
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view. 

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