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The PIPC Blog

PIPC Weekly Update - March 20, 2017 

3/20/2017

 
In This Week’s Issue:
​

1. NYT: Informed Patient? Don’t Bet on It, click here to view the article. 
2. PCORI Blog: How Advisory Panels Contribute to PCORI's Research Agenda, click here to view the blog post.
3. A Clinician's Plea for More Pragmatic Clinical Trials in Diabetes, click here to view the article.
4. Five Big Challenges to Utilizing Genomic Data for Precision Medicine, click here to view the article.
5. AJMC: Improving Value Frameworks and Guiding Them to Maturity, click here to view 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. NYT: Informed Patient? Don’t Bet on It
 
Dr. Mikkael Sekeres and Dr. Timothy Gilligan of the Cleveland Clinic discuss informed consent in a provocative new article in the New York Times. “We want to let you in on a secret… The secret is that informed consent in health care is commonly not­-so-­well informed. It might be a document we ask you to sign, at the behest of our lawyers, in case we end up in court if a bad outcome happens. Unfortunately, it’s often not really about informing you… Unfortunately the farce of informed consent only worsens in medical research. Before you can enroll in a clinical trial of a cancer drug, we’ll hand you a 25­page document that describes the trial’s purpose, its design, the medications you’ll receive, other standard treatments, and the complications you may suffer. Oh, and we’ll tell you that you are responsible for any medical costs not covered by insurance or the trial sponsor. That’s for the lawyers, again. We will then ask you to sign the final page, acknowledging your understanding and your agreement to participate in the trial.”
 
“A fundamental challenge with this process is that it is often unrealistic to think that you actually could be fully informed of what you’re about to undergo. How can we explain to you the experience of having your chest cracked open, or what it feels like when you go through chemotherapy? Neither of us has undergone heart surgery, or treatment for cancer, and we don’t kid ourselves that any depiction of the experience we provide will be enough… We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life­changing decisions about health care.” Click here to view the article. 

2. PCORI Blog: How Advisory Panels Contribute to PCORI's Research Agenda
 
In a new post on The PCORI Blog, Bruce Monte Jr., MSCEP of UnitedHealth Group discusses the importance of PCORI’s advisory panels. “This spring, I will complete four years as a member of the PCORI Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options... The panel has kept patients at the center of the discussion and considered a vast array of potential research questions, ranging from comparing radiation therapies for breast cancer to weighing treatment options for chronic migraines to comparing medications for pediatric Crohn's disease.” Click here to view the blog post.
 
PCORI is now accepting applications for the 2017 Advisory Panel member selection cycle. Third-party nominations and applications deadlines are Friday, March 31, by 5:00 p.m. (ET). Before you submit an application, check out the following links for background information:

  • Find out more about the current openings on each advisory panel;
  • Learn about the requirements and expectations for submitting an application;
  • Learn how to submit a third-party nomination; and
  • Find out how to apply.
 
3. A Clinician's Plea for More Pragmatic Clinical Trials in Diabetes
 
As Edward C. Chao, DO commented last week in Endocrinology Advisor, “While we cannot completely replicate or account for all demographics, medication regimens, and other medical conditions of patients who may end up taking a new diabetes medication, we also need other types of studies to augment our knowledge about medications at a more patient-specific level. [Sheldon Greenfield, MD] states, ‘Comparative effectiveness research is, in essence, framed by asking the core question: for a doctor and a patient, what is the best treatment for that patient in terms of both benefits and harms?’” Click here to view the article.
 
4. Five Big Challenges to Utilizing Genomic Data for Precision Medicine
 
In Healthcare IT News last week, two Advisory Board research leaders discuss the current state of precision medicine – and what it will take for genomics to become part of routine care. “‘It's a big step to go from trial-and-error medicine to evidence-based medicine,’ said Jim Adams, executive director of research at The Advisory Board. ‘Even for evidence-based care and precision medicine, genomics data is really important. But it's not one-to-one. You can get to precision medicine without genomics data,’ he added. ‘There's a lot of work that can be done without the genomic data to achieve precision medicine while we wait for the technology and industry to catch up.’” Click here to view the article.
 
5. AJMC: Improving Value Frameworks and Guiding Them to Maturity
 
As detailed in The American Journal of Managed Care, “There are a number of value frameworks currently released...However, importantly, they are all in their infancy… ‘Despite this lack of full maturity, some of these frameworks are operating, de facto, to influence health care decision making, and the demand that has fueled their development is unlikely to abate in an increasingly value-conscious environment,’ [Robert W. Dubois, MD, PhD, and Kimberly Westrich, MA] wrote. ‘It is essential, therefore, that stakeholders also demand the necessary improvements to these frameworks, and that their developers respond promptly and accordingly.’” Click here to view the article.

​6. Upcoming Events and Webinars
 
Boot Camp Translation Training
March 20-22, Denver, CO
Click here for details.
 
Evidence-Based Guidelines Affecting Policy, Practice and Stakeholders (E-GAPPS III) Conference
March 20-21, 2017, New York, NY
Click here for details.
 
PCORI Board of Governors Meeting
March 21, 2017
Click here for details.
 
PCORnet 101
March 21, 2017
Click here for details.
 
Webinar: Making the Grade: Utilizing Evidence for Health Technology Initiatives
March 30, 2017
Click here for details.
 
PCORI: Advisory Panel on Improving Healthcare Systems Spring 2017 Meeting
March 31, 2017
Click here for details.
 
Getting to Know PCORI: From Application to Closeout
April 10 - 11, 2017
Click here for details.
 
Evaluating Patient Treatment Options: How Do We Know What Works Best?
April 18, 2017
Click here for details.
 
Advisory Panel on Communication and Dissemination Research Spring 2017 Meeting
April 21, 2017
Click here for details.
 
Advisory Panel on Rare Disease Spring 2017 Meeting
April 26, 2017
Click here for details.
 
ICER Orphan Drug Assessment and Pricing Summit
May 31, 2017
Click here for details.
 
7. Medical Journal Articles
 
Translating Comparative Effectiveness Research Into Practice: Effects of Interventions on Lifestyle, Medication Adherence, and Self-Care for Type 2 Diabetes, Hypertension, and Obesity Among Black, Hispanic, and Asian Residents of Chicago and Houston, 2010 to 2013, click here to view.
 
Maintaining Primacy of the Patient Perspective in the Development of Patient-Centered Patient Reported Outcomes, click here to view.
 
Value-Based Insurance Design Benefit Offsets Reductions In Medication Adherence Associated With Switch To Deductible Plan, click here to view.
 
Doxycycline Versus Prednisolone as an Initial Treatment Strategy for Bullous Pemphigoid: A Pragmatic, Non-Inferiority, Randomised Controlled Trial, click here to view.
 
Detecting Heterogeneous Treatment Effects to Guide Personalized Blood Pressure Treatment: A Modeling Study of Randomized Clinical Trials, click here to view.
 
A Tale of Two Trials: Reconciling Differences in Results by Exploring Heterogeneous Treatment Effects, click here to view.
 
Comparative Effectiveness of Imaging Modalities for the Diagnosis and Treatment of Intussusception: A Critically Appraised Topic, click here to view.
 
Evidence-Based Versus Personalized Medicine in Pediatric Urology: The Evidence Supports Evidence-Based Medicine, click here to view.
 
Evidence-Based Versus Personalized Medicine in Pediatric Urology, click here to view.
 
Social Media for Arthritis-Related Comparative Effectiveness and Safety Research and the Impact of Direct-to-Consumer Advertising, click here to view.
 
Comparative Effectiveness and Safety of Erythropoiesis-Stimulating Agents (Biosimilars vs Originators) in Clinical Practice: A Population-Based Cohort Study in Italy, click here to view.
 
8. AHRQ Effective Program Updates
 
First- and Second-Generation Antipsychotics in Children and Young Adults: Systematic Review Update -- Final Report, click here to view.
 
Strategies for Improving the Lives of Women Aged 40 and Above Living With HIV/AIDS -- Disposition of Comments, click here to view.
 
Physiologic Predictors of the Need for Trauma Center Care: A Systematic Review -- Research Protocol, click here to view.
 
Treatments for Adults with Schizophrenia: A Systematic Review, click here to view.
 
Anxiety in Children, click here to view.
 
Patient Safety in Ambulatory Settings -- Disposition of Comments Report, click here to view.
 
Data Linkage Strategies To Advance Youth Suicide Prevention -- Disposition of Comments Report, click here to view.
 
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors -- Research Protocol, click here to view.
 
Obesity Prevention and Control -- Research Protocol, click here to view.
 
Telehealth for Acute and Chronic Care Consultations -- Research Protocol, click here to view.

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