In This Week’s Issue:
1. Epilepsy Foundation: Close-Minded Medicaid Proposals Would Harm Patients, click here to read the blog.
2. Letter to MedPAC: Don’t Allow Medicare to Rely on Flawed Cost Effectiveness Analyses, click here to read the letter.
3. PMC 14th Annual State of Personalized Medicine Luncheon, click here to register.
4. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
5. Institute for Patient Access Issues Response to ICER Review of CGRP Inhibitors for Migraine, click here to read the article.
6. Medpage Today: Show Me Where to Sign, click here to view.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. Epilepsy Foundation: Close-Minded Medicaid Proposals Would Harm Patients, click here to read the blog.
2. Letter to MedPAC: Don’t Allow Medicare to Rely on Flawed Cost Effectiveness Analyses, click here to read the letter.
3. PMC 14th Annual State of Personalized Medicine Luncheon, click here to register.
4. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
5. Institute for Patient Access Issues Response to ICER Review of CGRP Inhibitors for Migraine, click here to read the article.
6. Medpage Today: Show Me Where to Sign, click here to view.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. Epilepsy Foundation: Close-Minded Medicaid Proposals Would Harm Patients
Philip Gattone, President and CEO of the Epilepsy Foundation, penned a blog discussing the harms of cost effectiveness analyses to patients with epilepsy. “When it comes to epilepsy medications, individuals often react quite differently to available treatments. That’s why patients need meaningful access to the full range of treatments available — and the specialists who know how to prescribe them. This is quality physician-directed care that must be provided for patient-centered care. Recently published research shows that most cost effectiveness analyses do not account for these important differences among patients. Patients just want the treatment that works for them. Let’s call on states to demonstrate the impact of empowering patients and providers with information before we start taking away treatment options.” Click here to read the blog.
2. Letter to MedPAC: Don’t Allow Medicare to Rely on Flawed Cost-Effectiveness Analyses
Over 40 organizations representing patients, people with disabilities, and providers joined PIPC in a letter to the Medicare Payment Advisory Commission (MedPAC) expressing concerns about MedPAC’s consideration of cost effectiveness in Medicare. “We are concerned that the 'incremental approach' suggested by commissioners may be intended to impose cost effectiveness over time, thereby avoiding intense scrutiny despite its methodological flaws and long-term impact on access to care. Additionally, such a policy recommendation would rely on overturning or undermining the law passed in 2010 by Congress banning Medicare from incorporating the QALY metric used in cost effectiveness analyses."
The letter also states: “Policymakers look to MedPAC for recommendations that will not only lower health costs, but better align it with high-quality healthcare. Incorporating simplistic average measures of value into Medicare only hinders progress and innovation, as well as increases discrimination against those who do not fit the average. No patient is average. Instead, we want MedPAC proposing policies that allow patients and people with disabilities to get high value care tailored to their unique characteristics, needs and individual response to treatment.” Click here to read the letter.
3. PMC 14th Annual State of Personalized Medicine Luncheon
The Personalized Medicine Coalition will hosts its 14th annual Personalized Medicine Luncheon at the National Press Club this Wednesday, May 23. “At the Personalized Medicine Coalition's 14th Annual State of Personalized Medicine Luncheon, titled Public Perspectives on Personalized Medicine: A Public Opinion Survey Launch Event, PMC will unveil the results of a representative survey of 1,001 Americans that explored awareness of personalized medicine, reactions to value propositions based on the field’s ability to improve the quality and cost of health care, and concerns related to ethics, privacy and access. The survey was conducted by KRC Research, a global leader in understanding public opinion, and jointly funded by PMC and GenomeWeb. It promises to help inform public policies and efforts to facilitate the integration of personalized medicines into health care.” Click here to register.
4. 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.
5. Institute for Patient Access Issues Response to ICER Review of CGRP Inhibitors for Migraine
Jaime Rosenberg of The American Journal of Managed Care notes that The Institute for Patient Access issued a response to the Institute for Clinical and Economic Review (ICER) following its report assessing the clinical effectiveness and economic value of calcitonin gene-related peptide (CGRP) inhibitors for the treatment of chronic or episodic migraines. “The response begins, ‘Migraine is one of the most prevalent neurological disorders worldwide, associated with substantial health, sociological, and economic consequences. Yet, ICER's draft evidence report, dated April 11, inaccurately assesses the benefits that migraine patients can receive from CGRP inhibitors.’ The institute then outlined 5 components.” Click here to read the article.
6. Medpage Today: Show Me Where to Sign
Fred Pelzman urges provider groups to find a patient-centered solution to excessive paperwork in an article for Medpage Today. “When we have a patient who needs assistance at home, either for a short period after a hospitalization or for a longer period for chronic debilitating illnesses, and we've asked in a patient-centered way for more care to be provided to them at home so they can safely remain in the community, we turn to these partners in care to take over some aspects of the care of this patient. The agencies that are assigned to help provide this care go into the patient's home, review their medical conditions, and decide what sort of care that patient needs. We hope these people are professionals, and that they know what they're doing, and to the best of my knowledge in the past few decades of doing this, I can't remember ever seeing one of these pieces of paper where I said, ‘wait a minute, this is totally wrong, or dangerous; they should not be doing this for this patient.’” Click here to view.
7. Upcoming Events and Webinars
PCORI Online: Progress Report Webinar
May 21, 2018
Click here for details
PCORI Board of Governors Meeting
May 22, 2018
Click here for details
Public Perspectives on Personalized Medicine: A Public Opinion Survey Launch Event
May 23, 2018
Click here for details
PCORI Stakeholder Meeting: Advancing the State of Evidence for Decision Makers about Telehealth
May 24, 2018
Click here for details
PCORI's Achievements in Health Research and Future Outlook (AAMC Research on Care Community Webinar)
May 29, 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
Board of Governors Meeting: June 19, 2018
June 19, 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.
8. Medical Journal Articles
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click hereto view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
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.
9. AHRQ Effective Program Updates
Mobile Health Applications for Self-Management of Diabetes, click here to view.
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.
