PIPC Weekly Update - May 8, 2017

In This Week’s Issue:
1. Chairman’s Corner: Examining Episode Payment Models, click here to read the blog.
2. Alliance for Aging Research Releases New ‘Pocket Film’ Encouraging Clinical Trial Volunteerism, click here to watch the video.
3. NQF Issues National Standards for Tools to Help Patients Make Healthcare Decisions, click here to read the article.
4. The Post: Changing the Culture, click here to read the article.
5. PMLiVE: Real-world Evidence: It’s All in the Approach, click here to read the article.
6. PharmExec: Measuring the Value of Prescription Drugs, click here to read the article.
7. WSJ: Personalized Medicine is Here, click here to read the op-ed.
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.
 

1. Chairman’s Corner: Examining Episode Payment Models
PIPC Chairman Toney Coelho’s latest Chairman’s Corner blog touches on some of PIPC’s recent comments submitted to CMMI regarding recently proposed episode payment models. “I applauded the agency for making a deliberate and conscious effort to solicit authentic patient feedback about their proposed new payment models Although I’ve been critical in the past, I told them that I appreciated their seizing of this opportunity to forge a new path forward on engaging stakeholders, particularly patients, in the development, implementation and evaluation of alternative payment models.”
 
“Engaging the patient community is a complex task that requires more than the notice and comment processes traditionally used by regulatory agencies. However, a more structured process for patient engagement that leverages CMMI’s own best practices, along with creative methods employed by organizations such as the Patient-Centered Outcomes Research Institute (PCORI) and the Food and Drug Administration’s Patient Focused Drug Development Initiative, will ensure that the patient perspective is well represented in CMMI’s model tests and improve their likelihood of success.” Click here to read the blog.

2. Alliance for Aging Research Releases New ‘Pocket Film’ Encouraging Clinical Trial Volunteerism
The Alliance for Aging Research released a new animated “pocket film” entitled Pay it Forward: Volunteering for a Clinical Trial to encourage clinical trial volunteerism. “A vital part of medical research, clinical trials are research studies involving people that evaluate the effects of an experimental test or treatment. Clinical trials cannot happen without the participation of volunteers. However, clinical trials overall are significantly under-enrolled—with 37 percent of trial sites failing to meet their enrollment goals, and 11 percent never even enrolling a single patient. Under-enrollment is an especially significant problem among older adults, who are also those most disproportionately impacted by chronic disease. For example, even though more than half of all cancers are diagnosed in people ages 65 and older, only 25 percent of cancer-focused clinical trial enrollees are from that age group.” Click here to watch the video.

3. NQF Issues National Standards for Tools to Help Patients Make Healthcare Decisions
The National Quality Forum recently issued a set of national standards for decision aids, which are key resources for improving shared decision making between providers and patients. “Decision aids—such as videos, online tools, and other resources—are evidence-based tools designed to inform patients who are making specific, deliberate choices about their care among viable healthcare options. Previously, no national standards existed to validate the quality of patient decision aids. ‘Both consumers and clinicians urgently need healthcare resources they can trust that meet a reasonable threshold for quality,” said Helen Burstin, MD, MPH, NQF’s chief scientific officer. “National standards to evaluate decision aids are critical to ensuring that these resources offer accurate information to patients so they can evaluate healthcare choices that reflect their goals, values, and preferences.’” Click here to read the article.
 
4. The Post: Changing the Culture of Research
Diana Tonnessen reports on PCORI’s plan to transform the culture of healthcare research in The Post. “...[PCORI Director Joe Selby, M.D., M.P.H.] said that engaging patients, families, caregivers, clinicians and other stakeholders in the research process is at the center of PCORI's plan to transform the culture of health care research. ‘Patients have unique perspectives that can change and improve the questions researchers ask in scientific studies,’ he said, adding that in patient-centered research, ‘patient partners’ are not research subjects in studies; rather, they are members of the research team who offer their perspectives on everything from formulating research questions to designing the study to disseminating the results.” Click here to read the article.

5. PMLiVE: Real-world Evidence: It’s All in the Approach
Dr. Martin Goldman notes in a PMLiVE article that the merit of real-world evidence in the promotion and use of medicines is increasing and so too are the number of methodologies available  “...Whatever its source, real-world evidence is more representative of the outcome of healthcare interventions in the real world, where there is a wider variety of users, compared to regulatory clinical studies, no patient exclusions and no critical attention to the pattern of usage of products. In addition such studies, in support of reimbursement, may answer the simple question of how well the medicine worked for the individual. The question: ‘Did it make them better?’ is rarely asked in clinical trials.” Click here to read the article.

6. PharmExec: Measuring the Value of Prescription Drugs
Jill Wechsler reports in Pharmaceutical Executive about the new set of principles developed by the National Pharmaceutical Council as it continues to pursue value frameworks. “...[T]he National Pharmaceutical Council (NPC) has developed a set of ‘guiding principles’ that it hopes will shape pharmaceutical value frameworks under development by medical societies and healthcare organizations. NPC, the National Health Council, Faster Cures and other stakeholders emphasize the importance of considering patient perspectives and promoting transparency in comparative and cost assessments, as well as the potential for drugs to offset treatment costs.” Click here to read the article.
 
7. WSJ: Personalized Medicine is Here
Peter Huber and Paul Howard penned an op-ed in The Wall Street Journal commenting on the FDA approval of 10 of the personal-genomics company 23andMe’s screening tests for genetic health risks, including one for Alzheimer’s and one for a rare blood disorder.  “...To its credit, the FDA is increasingly embracing the future of big data and precision medicine. The agency has developed PrecisionFDA, an information ‘commons’ where researchers and companies are working together to develop standards for the next generation of genomic-sequencing tools and algorithms. The agency has also launched Project Informed, which uses predictive analytics and other data tools to mine the enormous amounts of information flooding into the agency from wearable devices and traditional clinical trials.” Click here to read the op-ed.
 
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability
The American Association on Health and Disability’s Frederick J. Krause Scholarship on Health and Disability is currently accepting applications. The scholarship honors Frederick J. Krause, a lifelong advocate for those with disabilities who passed away in 2014. Beginning with his role as a special education teacher, Mr. Krause’s distinguished career in advocacy included service in the federal government and the cofounding of the American Association on Health and Disability. The scholarship pays tribute to Mr. Krause by awarding scholarships to students with disabilities that are pursuing an education on disability-related topics. Click here to apply.
 
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting
May 8, 2017
Click here for details.
 
Webinar on Adaptation of HTA Reports
May 9, 2017
Click here for details.
 
INAHTA: OCM Stakeholder Public Forum
May 11, 2017
Click here for details.
 
CMS: Oncology Care Model Stakeholder Feedback Opportunity
May 11, 2017 Public Forum
Click here for details.
 
PCORI: Advisory Panel on Addressing Disparities Spring 2017 Meeting
May 17, 2017
Click here for details.
 
Awardee Progress Reporting Webinar
May 24, 2017
Click here for details.
 
Integrating PROs in EHRs: Presentation of a Users' Guide and Discussion of Standardization 
May 25-26, 2017
Click here for details.
 
ICER: Orphan Drug Assessment and Pricing Summit
May 31, 2017
Click here for details.
 
Webinar: Observational Research: Gathering Evidence in the 21st Century
June 1, 2017
Click here for details.
 
Introduction to HEOR: Principles and Practice in Health Care Decision Making
October 5-8
Click here for details.
 
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
 
10. Medical Journal Articles
A Real-World Approach to Evidence-Based Medicine in General Practice: A Competency Framework Derived from a Systematic Review and Delphi Process, click here to view.
 
Comparative Effectiveness of Prostate Cancer Treatments for Patient-Centered Outcomes: A Systematic Review and Meta-Analysis (PRISMA Compliant), click here to view.
 
AMCP Partnership Forum: Driving Value and Outcomes in Oncology, click here to view.
 
Real-World Evidence and the Behavioral Economics of Physician Prescribing, click here to view.
 
Verification of Decision-Analytic Models for Health Economic Evaluations: An Overview, click here to view
 
Design and Baseline Data from a PCORI-Funded Randomized Controlled Trial of Family-Centered Tailoring of Diabetes Self-Management Resources, click here to view.
 
Uninterrupted Dabigatran versus Warfarin for Ablation in Atrial Fibrillation, click here to view
 
Improving Recruitment and Retention Rates in a Randomized Controlled Trial, click here to view
 
Access to Non-Statin Lipid Lowering Therapies in Patients at High-Risk of Atherosclerotic Cardiovascular Disease, click here to view
 
Reevaluating Eligibility Criteria — Balancing Patient Protection and Participation in Oncology Trials, click here to view
 
Comparative Effectiveness in Urology: A State of the Art Review Utilizing a Systematic Approach, click here to view
 
The Relationship Between Adherence and Total Spending Among Medicare Beneficiaries With Type 2 Diabetes, click here to view
 
Policies for Use of Real-World Data in Health Technology Assessment (HTA): A Comparative Study of Six HTA Agencies, click here to view
 
Clinical Patient Registry Recruitment and Retention: A Survey of Patients in Two Chronic Disease Registries, click here to view
 
Healthcare Costs and Medication Adherence Among Patients with Fibromyalgia: Combination Medication vs. Duloxetine, Milnacipran, Venlafaxine, and Pregabalin Initiators, click here to view.
 
Partnering with patients: how did you involve patients in your research? Click here to view.
 
Beyond the Label: Steering the Focus Toward Safe and Effective Prescribing. Click here to view.
 
EBM vs. EBM: combining evidence-based and experienced-based medicine in resuscitation research. Click here to view
 
Comparative Effectiveness of Cefazolin versus Nafcillin or Oxacillin for Treatment of Methicillin-Susceptible Staphylococcus aureus Infections Complicated by Bacteremia: A Nationwide Cohort Study, click here to view.
 
 
11. AHRQ Effective Program Updates
Tympanostomy Tubes in Children with Otitis Media -- Final Report, click here to view
 
Treatment of Osteoarthritis of the Knee: An Update Review -- Final Report, click here to view.
 
Assessment Tools for Palliative Care -- Final Report, click here to view.
 
Noninvasive, Nonpharmacological Treatment for Chronic Pain, click here to view.
 
The Role of Immunotherapy in the Treatment of Asthma, click here to view
 
Preventing Complications and Treating Symptoms of Diabetic Peripheral Neuropathy -- Final Report, click here to view.
 
Systematic Review of Intermittent Inhaled Corticosteroids and of Long-acting Muscarinic Antagonists for Asthma, click here to view.
 
Interventions to Prevent Age-Related Cognitive Decline, Mild Cognitive Impairment, and Clinical Alzheimer's-Type Dementia -- Final Report, click here to view
 
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.