1. PIPC Submits Comments on HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs, click here to read the letter.
2. PIPC Patient Blog: Our Children Are Worth It, click here to read the blog.
3. Quality, Not Quantity, Should Guide Medicare Coverage for Heart Valve Disease Treatment, click here to read the op-ed.
4. Op-Ed: The Disability Trap, click here to read the op-ed.
5. Patient EngagementHIT: Best Practices for Patient-Centered Appointment Agenda-Setting, click here to read the article.
6. 2018 PCORI Annual Meeting, click here for details.
7. PCORI Peer Review Opportunity, click here to apply.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
In response to the Department of Health and Human Services (HHS) request for information (RFI) on the agency's Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs, PIPC has submitted a comment letter urging HHS to advance policies that emphasize the individual needs of patients. PIPC Chairman Tony Coelho encouraged HHS to make decisions that incorporate comparative clinical effectiveness research that works for patients to improve their health decisions, arguing for "informed healthcare that enables patients, doctors, and other health care professionals to choose the care that best meets the individual needs of the patient; and a health system that fosters continued medical innovation." The letter also includes four guiding principles for HHS to consider as they consider implementing new drug pricing policies, including: (1) avoid one-size-fits-all policies; (2) codify criteria for patient-centeredness across HHS programs; (3) convene patient advisory panels; and (4) focus on policies that advance informed healthcare. Click here to read the letter.
2. PIPC Patient Blog: Our Children Are Worth It
In PIPC’s newest Patient Blog, Stephanie Bozarth provides a firsthand perspective of why cost effectiveness analysis are wrong for persons with disabilities. “Should one consider the life of a person with a disability less valuable than the life of a person without a disability? Alarmingly, states are increasingly relying on policies that do just that, in order to determine the value of health care services and treatments. For children suffering from life-threatening and debilitating disorders, like my daughter, reliance on any standard that considers her life less valuable than someone without a disability, is simply unacceptable.” Click here to read the blog.
3. Quality, Not Quantity, Should Guide Medicare Coverage for Heart Valve Disease Treatment
PIPC Steering Member, the Alliance for Aging Research's CEO Sue Peschin, touts the benefits of the heart valve disease treatment called transcatheter aortic valve replacement (TAVR), arguing that CMS must develop a solid coverage policy that provides patients with access to this treatment. “Volume is no longer a necessary surrogate for health outcomes in hospitals that offer TAVR. There should be more emphasis on: 1) timely intervention, because the longer patients wait to be treated, the more likely they are to die; and, 2) a focus on health outcomes. Additional measures such as quality of life, mobility, and length of stay in the hospital should be added into the mix. Centers for Medicare and Medicaid Services should work with independent partners on survey research to better understand what patients, not just doctors, prefer.” Click here to read the op-ed.
4. Op-Ed: The Disability Trap
In an op-ed for The New York Times, Dr. Jason DiSilva explains how variations in state Medicaid programs can block access to necessary care. “I next looked at surrounding states to see if they had adequate Medicaid coverage. I discovered that funding for Medicaid varies widely by state, creating huge hurdles for sick and disabled people like myself who need to move to another state, especially those of us who need in-home round-the-clock care. The disparity amounts to institutionalized discrimination against aging and disabled people, and it prevents me from truly having a choice about where I can live.” Click here to read the op-ed.
5. Patient EngagementHIT: Best Practices for Patient-Centered Appointment Agenda-Setting
In an article for Patient EngagementHIT, Sara Health reports on a Mayo Clinic study that suggests appointment agenda-setting is important for integrating the patient as part of the care team and better managing a strict appointment time frame. “Primary care clinicians tended to allow the patient to set the agenda more often than specialists. Just under one-half (49 percent) of primary care providers elicited the patient agenda, compared to only 20 percent of specialist providers. These results point to some considerable pitfalls in the patient-provider interaction. As value-based care has taken hold in healthcare, medical experts have asserted the importance of patient engagement in care. This requires integrating the patient as an equal member of the care team, engaging in shared decision-making, and integrating the patient voice into care.” Click here to read the article.
6. 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.
7. PCORI Peer Review Opportunity
PCORI is seeking patients and stakeholders to review for upcoming PCORI-funded research studies that have reached completion. Of particular need are reviewers who have had, or have considered, bariatric surgery, as well as those who identify as African American and/or Latino who are living with asthma or serve as a caretaker for an older adult with asthma are of a particular need. The goal of peer review is to ensure that the primary research studies funded by the Patient Centered Outcomes Research Institute (PCORI) are held to the highest standards of scientific integrity, methodological rigor, and usefulness to patients, caregivers, clinicians, and other healthcare stakeholders. If you’re interested or know someone who is interested in participating in this capacity, please contact Kira Lesley with Editorial Office for PCORI Peer Review at firstname.lastname@example.org. Click here for additional details. Click here to apply for a scholarship to attend.
8. Upcoming Events and Webinars
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
9. Medical Journal Articles
Inverting the Patient Involvement Paradigm: Defining Patient Led Research, click here to view.
Stakeholder-Driven, Consensus Development Methods to Design an Ethical Framework and Guidelines for Engaged Research, clickhere to view.
The Effect of Medical Technology Innovations on Patient Outcomes, 1990-2015: Results of a Physician Survey, click here to view.
The Impact of Individual Patient Data in a Network MetaAnalysis: An Investigation into Parameter Estimation and Model Selection, click here to view.
Patient Similarity for Precision Medicine: A Systematic Review, click here to view.
Multi-Stakeholder Engagement in Health Services Research, click here to view.
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 here to 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.
10. AHRQ Effective Program Updates
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.
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.