PIPC Weekly Update - February 13, 2017

In This Week’s Issue:
 
1. THIS WEEK: PIPC Webinar – PCORI Advocacy 101, click here for details.
2. Tony Coelho in Huffington Post: ‘Patient Voices, Patient Value: Stepping Out of the Ivory Towers and into the Real World’, click here to view the article.
3. National Academy of Medicine: ‘Framework for Patient and Family Engaged Care’, click here to view the discussion paper.
4. ICER to Host Orphan Drug Assessment and Pricing Summit, click here for details.
5. PCORI Blog: Crowdsourcing to Be the Future for Medical Research, click here to view the blog post.
6. How Do Payers Use Patient Reported Outcomes?, click here to view the article.
7. ICER to Review Treatments for Ovarian Cancer in Upcoming Report, click here to view the press release.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below
10. AHRQ Effective Program Updates, see details below.

​1. THIS WEEK: PIPC Webinar - PCORI Advocacy 101
 
On Wednesday, February 15th from 2:00-3:00pm ET, the Partnership to Improve Patient Care (PIPC) invites PCORI ambassadors and patient advocates to an ‘Advocacy 101’ webinar to learn more about the Institute’s pending reauthorization and how stakeholders can support of patient-centered research. This informational webinar will include a background related to PCORI’s creation, the legislative process that we anticipate for reauthorization in 2019, and appropriate tactics for outreach to legislators to ensure they understand the personal impact that PCORI’s work has on patients and other stakeholders.
 
Kindly RSVP to: [email protected]. Click here for additional details.
 
2. Tony Coelho in Huffington Post: ‘Patient Voices, Patient Value: Stepping Out of the Ivory Towers and into the Real World’
 
In a new article published in Huffington Post, PIPC Chairman Tony Coelho discusses the importance of recognizing “value” to the patient in the health reform debate. “While I may not concur with everything coming out of the new administration on health care, I agree broadly with the need for policymakers to get out of the ivory towers. Policymakers need to listen to real patients and embrace health care solutions that matter to patients, caregivers and people with disabilities. And frankly, in this drive to value-based health care, it hasn’t always been about us. It’s often about what is most cost effective for the ‘average patient’ and what is most cost effective for the payer. But I am not average. You are not average. We are the reason a health care system exists - our health and well-being, our treatment, our recovery… This administration can build bridges to the community of patients and people with disabilities by demonstrating they do not want a one-size-fits-all system of health care defined by people in lab coats. If this administration truly wants to get input from outside the establishment, then they should be looking to patients for insight as to how to improve the health care system.” Click here to view the article.
 
3. National Academy of Medicine: ‘Framework for Patient and Family Engaged Care’
 
The National Academy of Medicine has released a new discussion paper entitled “Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care.” This paper is the result of over a year of collaborative work performed under the auspices of the National Academy of Medicine’s Care Culture and Decision-Making Innovation Collaborative, co-chaired by Bill Novelli and Mary Naylor, and led by Planetree. In the paper, the co-authors assert that a cultural shift to “patient and family engaged care” is an essential driver to achieving the Quadruple Aim outcomes of better culture, better care, better health, and lower costs, and lay out a novel Guiding Framework for creating and sustaining a culture of patient and family engaged care that is grounded in both scientific evidence and the lived experience of patients, their care partners, practitioners, and health system leaders. Click here to view the discussion paper.
 
4. ICER to Host Orphan Drug Assessment and Pricing Summit
 
The Institute for Clinical and Economic Review (ICER) will host a multi-stakeholder policy summit in Washington, DC this May to discuss methods for assessing the value of new drugs for rare conditions, including how these methods can be applied to recommend fair prices that reflect the value of orphan drugs to patients and the health system, allowing for broader insurance coverage for innovative new treatments. Click here for details.

5. PCORI Blog: Crowdsourcing to Be the Future for Medical Research

A new post on The PCORI Blog notes how crowdsourcing “can accelerate medical research and improve global cardiovascular health, according to a new best-practices “playbook” released by the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI)… ‘Engaging patients and other healthcare decision makers in identifying research needs and guiding studies is a hallmark of our patient-centered approach to research, and crowdsourcing offers great potential to catalyze such engagement,’ said PCORI Executive Director Joe V. Selby, MD. ‘We hope the input we've received will help us develop new research funding opportunities that will lead to improved care for people with cardiovascular conditions.’” Click here to view the blog post.
 
6. How Do Payers Use Patient Reported Outcomes?
 
A new post on Healthcare Economist examines a recent study into how payers use patient reported outcomes (PRO) in oncology. “Payer participants interviewed generally indicated that they consider PRO evidence in their decisions but that such evidence is usually considered complementary to clinical and safety endpoints. PRO evidence appears to have greater influence outside the United States: When asked whether PRO data affect decision making when one therapy is being considered over another, 47% of U.S. payers and 78% of ex-U.S. payers in the web-based survey indicated that PRO data have an impact.” Click here to view the article.

7. ICER to Review Treatments for Ovarian Cancer in Upcoming Report

As detailed in a press release, “the Institute for Clinical and Economic Review (ICER) will develop a report assessing the comparative clinical effectiveness and value of emerging therapies for treatment of ovarian cancer... While awaiting further discussion with patient groups, clinical experts, and other stakeholders to help develop a formal scope for this review, our preliminary intent is to evaluate the emerging treatments rucaparib (Rubraca™, Clovis), niraparib (Tesaro), and olaparib (Lynparza™, AstraZeneca). This list may change as the scope develops. Click here to view the press release.
 
8. Upcoming Events and Webinars
 
Understanding the Proposed Updates to the ICER Value Assessment Framework
February 13, 2017
Click here for details.
 
PCORI: Community Engagement in Research: Practical Tips for Researchers and Community-based Organizations
February 23, 2017
Click here for details.
 
PCORI Online: Awardee Invoice Training Webinar
March 2, 2017
Click here for details.
 
National Value-Based Payment and Pay for Performance Summit
March 8, 2017, San Francisco, CA
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: Advisory Panel on Improving Healthcare Systems Spring 2017 Meeting
March 31, 2017
Click here for details.
 
ICER Orphan Drug Assessment and Pricing Summit
May 31, 2017
Click here for details.
 
9. Medical Journal Articles
 
Comparative Effectiveness and Safety of Preoperative Lung Localization for Pulmonary Nodules: A Systematic Review and Meta-Analysis, click here to view.
 
Comparative Effectiveness of Vancomycin and Metronidazole for the Prevention of Recurrence and Death in Patients With Clostridium difficile Infection, click here to view.
 
March Issue: Journal of Comparative Effectiveness Research, click here to view.
 
Cariprazine Versus Risperidone Monotherapy for Treatment of Predominant Negative Symptoms in Patients with Schizophrenia: A Randomised, Double-Blind, Controlled Trial, click here to view.
 
Does a One-Size-Fits-All Cost-Sharing Approach Incentivize Appropriate Medication Use? A Roundtable on the Fairness and Ethics Associated with Variable Cost Sharing, click here to view.
 
Refining Lung Cancer Screening Criteria in the Era of Value-Based Medicine, click here to view.
Patient, Caregiver and Clinician Use of Comparative Effectiveness Research Findings in Care Decisions: Results from a National Study, click here to view.
 
Patient, Caregiver and Clinician Views on Engagement in Comparative Effectiveness Research, click here to view.
 
Health Researcher Views on Comparative Effectiveness Research and Research Engagement, click here to view.
 
Involving Latina/o Parents in Patient-Centered Outcomes Research: Contributions to Research Study Design, Implementation and Outcomes, click here to view.
 
Maximizing Psychotherapy Outcome Beyond Evidence-Based Medicine, click here to view.
 
10. AHRQ Effective Program Updates
 
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.