1. Tell Insurers: Don't Discriminate on Care, click here to view.
2. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments, click here to read the report.
3. PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization
4. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine, see details below.
5. Op-ed: Looking to the future of patient-centered cancer research and treatment, click here to read the op-ed
6. Watch: Research on Voluntary Patient-Centered Opioid Tapering, click here to watch the video.
7. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
8. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
9. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply.
10. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
11. 2018 PCORI Annual Meeting, click here for details.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
PIPC Chairman stated in his blog, "Health-care payers are missing a tremendous opportunity to improve the health of our nation in a uniquely American way — by making health care about the individual person, based on his or her own characteristics.” Unfortunately, in August, the pharmacy benefit manager CVS Caremark announced that they would offer new plans to employers that exclude drugs if they exceed a subjective “cost-effectiveness” threshold. CVS would rely on a deeply flawed value assessment model developed by the Institute for Clinical and Economic Review (ICER) in determining whether treatments fall below a $100,000 “cost per quality-adjusted-life-year” limit. This type of cost effectiveness analysis discriminates against people with disabilities and other vulnerable groups like the elderly because it assigns higher value to people in “perfect health” than people in less-than-perfect health. Policy decisions based on cost-effectiveness ignore important differences among patients and instead rely on a single, one-size-fits-all assessment. Further, cost-effectiveness analysis discriminates against the chronically ill, the elderly and people with disabilities, using algorithms that calculate their lives as 'worth less' than people who are younger or non-disabled. Join PIPC in demanding that insurers and others stop relying on discriminatory cost-effectiveness thresholds to drive care decisions. Click here to learn more.
2. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments
PIPC has partnered with Xcenda to quantify the extent to which ICER incorporates stakeholder input in its final assessments, particularly patients. Upon review of submitted comments, and comparing those comments to ICER’s final value assessments, Xcenda was able to quantify that patient perspectives were half as likely to be incorporated than other stakeholders. The brief published today by PIPC bolsters their argument that ICER needs to take steps to improve not only its process for engagement, but also its consideration of input received from patients. Click here to read the report.
3. PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization
PIPC will conduct a webinar on Oct. 25 at 1pm EST to provide some basic background about the politics and policy of PCORI reauthorization. We are opening up registration to any individuals and organizations that have indicated interest in advocating for PCORI reauthorization to help in their own efforts to be effective advocates. PIPC is pleased to be a resource. Click here to register.
4. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine
The Personalized Medicine Coalition (PMC) is seeking patients, patient advocates, caregivers, health care professionals and academic researchers to participate in a series of webinar discussions to inform a patient-centered research agenda for personalized medicine. Personalized medicine is an evolving approach to health care based on the latest science where physicians use diagnostic tests to determine which medical treatments will work best for each patient. By combining the information from those tests with an individual’s medical history, circumstances and values, health care providers can develop tailored treatment and prevention plans. These webinar discussions will develop principles for how to better align priority patient outcomes with personalized medicine treatment strategies and outcomes research. Contact David Davenport if you are interested in participating.
5. Op-ed: Looking to the future of patient-centered cancer research and treatment
In an op-ed for The Boston Globe, Reed Jobs and Eric Lander discuss the evolution of patient-centered cancer research and treatment mechanisms. “Over the past 40 years, cancer research has seen revolutionary discoveries — about genes, targeted drugs, and immune therapies — that have already had dramatic effects for some patients. But to speed progress toward better therapies, we need another kind of revolution: We need to enable cancer patients to become active partners in research.Why? Because patients’ medical records, tumor samples, and personal experiences hold myriad clues — about which cancers will respond or become resistant to which therapies — that often can’t be found in research labs or clinical trials. Only patients have the right to share their information — to turn the health care system into a learning system where knowledge about any patient’s surprising remission or devastating recurrence can rapidly benefit every other patient.” Click here to read the op-ed.
6. Watch: Research on Voluntary Patient-Centered Opioid Tapering
Dr. Beth Darnall discusses how PCORI-funded research is being used to help patients who wish to reduce their use of prescription opioids. “Some of the problems with long-term opioid use or chronic pain is that in many cases that might have been the only option that has was given to patients when in fact we know that chronic pain is best treated with a multidisciplinary
treatment approach that involves self-management and psychological strategies alongside some medical treatments as well. We don’t have good evidence for how to help patients best reduce use of prescription opioids and many patients are interested in reducing their use of prescription opioids, but we lack solutions and evidence to best support any one treatment pathway. So, what we’re doing is conducting patient-centered opioid tapering and 1,300 patients who are taking long-term prescription opioids” Click here to watch the video.
7. DBSA Meeting: Patient Focused Drug Development Meeting
As a part of the Depression and Bipolar Support Alliance’s (DBSA) “Well Beyond Blue” campaign, DBSA will be hosting a meeting with the Food and Drug Administration (FDA) that focuses on patient-focused drug development. “Putting wellness within every individual’s reach is at the core of the DBSA mission, strategies, and programs. Key to that mission is educating decision-makers who conduct research, and make public health policy on wellness. That’s why we are hosting a meeting in the Washington, D.C. metro area on November 16, 2018 with the U.S. Food and Drug Administration (FDA) and drug and medical device manufacturers. This meeting will empower people living with depression and/or bipolar to share personal views on aspects of wellness that go beyond mere symptom reduction, as well as, name wellness strategies that work best for them. But we can’t do it without you. Our collective voices are needed in-person at this meeting which will be held in Silver Spring, MD. We intentionally scheduled the meeting to begin at 12:30 p.m., enabling people who live within driving distance to attend.” Click here to register.
8. Mental Health America: 2019 Call for Proposals is Now Open
Mental Health America is now accepting workshop proposals for its 2019 Annual Conference Dueling Mental Health and Chronic Conditions in Children and Adults. “There is a lack of uniformity across the health spectrum in how illnesses are categorized and deemed as chronic diseases and chronic conditions. Not only does this create confusion, but it may lead professionals across the spectrum to focus on specific illnesses and disregard other aspects of the person being treated, including co-occurring issues like mental health conditions and broader societal conditions such as poverty, trauma, and racism. To effectively treat an individual, we must look at the whole person, which means examining the connections that exist between traditional chronic physical conditions and mental health concerns. At MHA’s Annual Conference, we will offer a traditional mixture of keynote speakers, plenary discussions and workshop panels.” Click here for details. Deadline: November 30, 2018.
9. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures
The Centers for Medicare and Medicaid (CMS) are seeking nominations for a technical expert panel (TEP) examining CMS quality and efficiency measures. Health Services Advisory Group (HSAG) is seeking a TEP of approximately 15 to 20 individuals with the following perspectives and areas of expertise:
- Patient/family/caregiver perspectives
- Consumer and patient advocacy
- Social risk factors and disparities
- Health care quality improvement and clinical expertise in various settings (e.g., long-term care, acute care, ambulatory care, hospice)
- Quality measure development and evaluation, including statistical methods and survey design
- Health care economics and policy
10. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
Prostate Cancer: Final Evidence Report 10/4/18
Amyloidosis: Final Report 10/4/18
Hereditary Angiodema: Public Meeting 10/25/18
Opioid Use Disorder: Draft Evidence Report 9/5/2018 with comment period through 10/4/2018
Asthma: Draft Voting Questions and Evidence Report 9/24/2018 with comments through 10/22/2018
Atherosclerotic Cardiovascular Disease: Draft Scoping Document 8/30/2018, comments open through 12/17/18
Spinal Muscular Atrophy: Revised Scoping Document Published 9/19/18
11. 2018 PCORI Annual Meeting
The 2018 PCORI Annual Meeting will take place on Wednesday, October 31, 2018 to Friday, November 2, 2018 in Washington, DC. “As part of this year's theme, ‘From Evidence to Impact: Putting What Works into Action,’ attendees will hear about results from PCORI’s comparative clinical effectiveness (CER) studies, efforts to promote essential findings, and those findings’ impacts. We will also discuss important trends in patient-centered outcomes research and connect with colleagues to share ideas for future research opportunities that will help patients and those who care for them make better-informed healthcare decisions. We are pleased to host two keynote speakers, Amy Berman, RN, Senior Program Officer, John A. Hartford Foundation, and Mark Smith, MD, founding president, California Health Care Foundation.” Click here for details.
12. Upcoming Events and Webinars
PCORI Online: Cycle 3 2018 LOI Submission Webinar
October 23, 2018
Click here for details.
PCORI's New Data Sharing and Data Management Policy: What You Need to Know
October 24, 2018
Click here for details.
Advisory Panel on Patient Engagement Fall 2018 Meeting
October 30, 2018
Click here for details.
Facebook Live: Does Telehealth Improve Outcomes for Patients with Serious Mental Illness?
November 1, 2018
Click here for details.
2018 PCORI Annual Meeting Breakout Session: A Congressional Perspective on Patient-Centered Outcomes Research
November 1, 2018
Click here for details.
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
14th Annual Personalized Medicine Conference: Preparing for the New Possible
November 14-15, 2018
Click here for details.
PQA Social Determinants of Health Forum: Exploring Medication Access and Quality
November 14-15, 2018
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Fall 2018 Meeting
November 15, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
PCORI Board of Governors Meeting
December 11, 2018
Click here for details.
Advisory Panel on Rare Disease Winter 2018 Meeting
December 14, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
13. Medical Journal Articles
Unique Review Criteria and Patient and Stakeholder Reviewers: Analysis of PCORI's Approach to Research Funding, click here to view.
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research: A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Patient-Engaged Research: Choosing the "Right" Patients to Avoid Pitfalls, click here to view.
Engaging Patients in Health Care Epidemiology Research: A Case Example, click here to view.
A Beginning to Principles of Ethical and Regulatory Oversight of Patient-Centered Research, click here to view.
Oversight of Patient-Centered Outcomes Research: Recommendations From a Delphi Panel, click here to view.
Key Issues and Potential Solutions for Understanding Healthcare Preference Heterogeneity Free from Patient-Level Scale Confounds, click here to view.
Applying a Community-Based Participatory Research Framework to Patient and Family Engagement in the Development of Patient-Centered Outcomes Research and Practice, click here to view.
The Community and Patient Partnered Research Network (CPPRN): Application of Patient-Centered Outcomes Research to Promote Behavioral Health Equity, click here to view.
Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards, click here to view.
"Precision Health" for High-Need, High-Cost Patients, click here to view.
Industry Sponsorship and Research Outcome: Systematic Review with Meta-Analysis, click here to view.
14. AHRQ Effective Program Updates
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.