1. PIPC Patient Blog: Our Children Are Worth It, click here to read the blog.
2. PIPC Submits Comments on HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs, click here to read the letter.
3. PCORI Funding Announcement: Implementation of Effective Shared Decision Making Approaches in Practice Settings -- Cycle 2 2018, click here to apply.
4. PCORI Peer Review Opportunity, click here to apply.
5. Op-Ed: Quality, Not Quantity, Should Guide Medicare Coverage for Heart Valve Disease Treatment, click here to read the op-ed.
6. Patient EngagementHIT: Consumer-Centric Healthcare Lags Amid Value-Based Care Priorities, click here to read the article.
7. CMS Webinar: Technical Expert Panels: Developing and Implementing a TEP for Better Quality Measures, Click here to register.
8. 2018 PCORI Annual Meeting, click here for details.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
In PIPC’s newest Patient Blog, Stephanie Bozarth provides a firsthand perspective of why cost effectiveness analysis are wrong for persons with disabilities. “As the mother of a 12-year-old daughter with MPS, I can't help but get the shivers when new policies come out that could discriminate against children with disabilities. My daughter Annabelle has big blue eyes and a smile from ear-to-ear that lights up a room. She has hopes and dreams that are as big and exciting as any other young, vibrant child. But Annabelle's daily life is dramatically different than what the average American faces. Along with all the regular stresses of school, peer relations, and so forth, Annabelle is short in stature (approximately the size of a 3- or 4-year-old), she has severe bone and joint problems, hearing loss, corneal clouding, leaking heart valve, lower airway obstruction, along with other aches, pains and difficult-to-manage medical issues.” Click here to read the blog.
2. PIPC Submits Comments on HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs
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.
3. PCORI Funding Announcement: Implementation of Effective Shared Decision Making Approaches in Practice Settings -- Cycle 2 2018
PCORI is seeking letters of intent (LOI) by July 24 in response to a PCORI Funding Announcement promoting the targeted implementation and systematic uptake of effective shared decision making approaches in healthcare settings. “For this PFA, PCORI defines an SDM strategy as an intervention or approach that draws on and presents evidence to inform patients of available treatment options and their risks and benefits, and either engages patients in a decision-making process with their clinician or promotes their ability to engage in such a process. This initiative supports projects that propose active, multi-component approaches to implementing effective SDM strategies that address existing barriers and obstacles to uptake and maintenance of shared decision making. The SDM strategy must have demonstrated effectiveness on patient, caregiver, or healthcare provider decision making using widely-accepted metrics; the corresponding implementation approach must have potential for use and scalability beyond the targeted implementation setting. Patients and others whose involvement is central to success of the proposed project should be involved in its design and execution.” Click here to apply.
4. 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.
5. Op-ed: 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.
6. Patient EngagementHIT: Consumer-Centric Healthcare Lags Amid Value-Based Care Priorities
In an article for Patient EngagementHIT, Sara Health writes that organizations are failing to deliver consumer-centric healthcare that activates the patient across the entire care continuum, according to recent reports. “The report, which included survey responses from pharmacy, provider, and payer organizations, showed that these industry segments are not integrating patient centricity into their care strategies. Those patterns run counter to industry imperatives to better serve the patient as a healthcare customer and consumer. As patients continue to assume greater financial responsibility for their care, they are recognizing the purchasing power they have. No longer is it enough for a payer to sell health insurance, or for a clinician to treat a cold. Instead, these providers need to meaningfully engage the patient in her own health.” Click here to read the article.
7. CMS Webinar: Technical Expert Panels: Developing and Implementing a TEP for Better Quality Measures
The Centers for Medicare and Medicaid is hosting a webinar on July 25 that will overview development and implementation of better quality measures. “Throughout the course of the webinar series, we have presented various methods for stakeholders of measure development to be included in the various phases of development. This session will take a closer look at one of the more complex methods of getting feedback: how to convene and facilitate a successful TEP to improve the quality of a measure. Presenters Jennifer Brustrom and Brenna Rabel, of Battelle, will share their experiences in implementing a TEP, including how to recruit participants, tips for purposeful facilitation, how to utilize the feedback, and lessons learned.” Click here to register.
8. 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.
9. Upcoming Events and Webinars
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
10. 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.
11. 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.