1. PIPC, Patient Stakeholders Tell HHS: 'Patients Deserve a Seat at the Table', click here to view the letter.
2. Modern Healthcare: First PCORI Studies on Improving Care Are Done, But Where Are the Results?, click here to view the article.
3. U.S. News & World Report: Everyone Benefits From Research, But What Are Your Responsibilities?, click hereto view the article.
4. PCORI Selects 47 Individuals, Small Groups Receive Initial Project Funding through Pipeline to Proposal Awards, click here to view the article.
5. Wall Street Journal: How Big Data Will Customize Our Health Care, click here to view the article.
6. Study Finds Poor Quality Patient Outcomes Data in Clinical Registries, click here to view the article.
7. Health Affairs Blog: It's Time For Value-Based Payment In Oncology, click here to view the article.
8. Upcoming Events and Webinar, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
Last week, the Partnership to Improve Patient Care (PIPC), along with over 70 individual patients and patient organizations—themselves representing millions of patients nationwide—sent a letter to the Department of Health and Human Services (HHS) asking them to recognize patients as key stakeholders in the Better, Smarter, Healthier initiative and in the Health Care Payment Learning and Action Network.
While most patient stakeholders agree that paying for “value” rather than “volume” will result in better outcomes for patients, the shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. That’s why it’s important that patients have a seat at the table in determining how these new payment models are implemented.
Since its founding, PIPC has been at the forefront of patient-centeredness in comparative effectiveness research (CER) – both its generation at the Patient-Centered Outcomes Research Institute (PCORI), and its translation into patient care. Having driven the concept of patient-centeredness in the conduct of research, PIPC looks forward to bringing the patient voice to the discussion of how to advance patient-centered principles throughout an evolving health care system.
PIPC’s members and the organizations represented on this letter look forward to collaborating with the HHS on how they can effectively bring the patient voice—represented by the over 70 signatures on the attached letter—to the Department’s ambitious new framework to move our health care system away from rewarding health providers for the quantity of care they provide and toward rewarding quality. We strongly believe that empowering patients to play an active role in their healthcare should be a strategic and achievable goal of this important work. Click here to view the letter.
2. Modern Healthcare: First PCORI Studies on Improving Care Are Done, But Where Are the Results?
According to a report in Modern Healthcare, “PCORI has now approved $845 million in funding for nearly 400 projects, and the latest round came April 21. The organization announced $120 million in funding for 34 comparative clinical-effectiveness research projects, including five pragmatic clinical studies. While some of the initial projects were criticized as too trivial to meaningfully inform clinical practice, the new studies address a wide range of important and controversial clinical questions, including use of radiation therapy for breast cancer, effective treatments for bipolar disorder, and lifestyle interventions versus drug therapy for diabetic patients… The results, experts say, are at risk of getting lost in the same black hole often noted of traditional clinical data, which often remains unpublished or unreported long after studies are completed… PCORI's hands-off approach to results may simply reflect what's known as the Inglefinger rule, the long-standing policy of the New England Journal of Medicine that discourages the sharing of data before it has been published, suggested Michael Millenson, president of the Highland Park, Ill., consulting firm Health Quality Advisors. But, he said, there needs to be ‘imaginative rethinking in the deployment of resources’ to ensure the efficient, effective and rapid translation of research into clinical practice.” Click here to view the article.
3. U.S. News & World Report: Everyone Benefits From Research, But What Are Your Responsibilities?
A new article in U.S. News & World Report discusses the promise and purpose of PCORnet. “PCORnet was designed to draw upon the wealth of useful information generated during patients’ routine doctor visits, centered on patients’ needs and priorities, while respecting their data security… Here’s how it will work: PCORnet has linked 29 individual networks to large amounts of clinical and health data that are embedded in our electronic health records. This is broken down to 18 “patient-powered research networks” and 11 clinical data networks (health systems). The "rules of engagement" that patients established clearly dictate that everyone who participates does so willingly, and is protected with their personal identifying information removed. Who you are as a person is preserved, but who you are as someone one can personally track or identify, is removed. Information about our disease and how we’re managing it gets pooled and is accessed by researchers… The promise of PCORnet means that soon our doctors will be able to see how hundreds of thousands of other patients, just like us, are responding to a diverse range of approaches in our care and disease management. This is the new meaning of patient-centered. No more decisions made based on a doctor's "best guess" or data from a limited number of subjects in a very rigid study. This is real-time information that helps everyone get better, quicker.” Click here to view the article.
4. PCORI Selects 47 Individuals, Small Groups Receive Initial Project Funding through Pipeline to Proposal Awards
As detailed in a recent press release, “the Patient-Centered Outcomes Research Institute (PCORI) has approved 47 new projects to receive community-building funding support through its Pipeline to Proposal Awards program. The 47 projects will receive Tier I awards ranging from about $10,700 to $15,000 and totaling nearly $700,000. The projects will bring together patients, other healthcare stakeholders, and researchers who share a desire to participate in patient-centered outcomes research. The goal of Tier I funding is to build partnerships around a healthcare topic and enable them to form ideas for proposals for patient-centered comparative effectiveness research (CER) studies.” Click here to view the article.
5. Wall Street Journal: How Big Data Will Customize Our Health Care
Dr. Drew Harris of Thomas Jefferson University’s School of Population Health comments in The Wall Street Journal that “data from large groups of patients under care will help health-care providers find small hotspots of disease quickly and precisely, rather than extrapolating from small samples. Ongoing monitoring will facilitate medical research, essentially transforming medical charts into tools for clinical trials. Active surveillance for side effects will improve drug safety and help demonstrate clinical efficacy… The challenge is making sense of it all.” Click here to view the article.
6. Study Finds Poor Quality Patient Outcomes Data in Clinical Registries
Last Week, Laura Joszt reported in The American Journal of Managed Care, “A review of clinical registries determined data collection on patient outcomes are substandard and the information is not useful for patients, physicians, and policy makers, according to a paper published in the Journal for Healthcare Quality… ‘A robust clinical registry can tell doctors in real time what medications work well and which are harming patients, yet the infrastructure to achieve that is vastly under-supported,’ study co-author Michol Cooper, MD, PhD, a surgical resident at the Johns Hopkins University School of Medicine, said. ‘The same rigorous standards we use to evaluate how well a drug does ought to apply to the way we report patient outcomes data.’” Click here to view the article.
7. Health Affairs Blog: It's Time For Value-Based Payment In Oncology
In a new article in Health Affairs Blog, Dana Goldman, Darius Lakdawalla, and Lee Newcomer comment that “we must transform the industry into a true value-based system that compensates providers for better outcomes and lower costs. Mortality is an obvious choice for contracting. Knowledge of the comparative effectiveness of the multiple regimens available to an individual cancer patient is essential to informed decisions about reducing overall costs. Measuring hospitalizations for complications of the therapy and impact on the cancer can be accomplished quickly and easily; this was a major source of cost reduction in a recently published episode payment program for cancer therapy.” Click here to view the article.
8. Upcoming Events and Webinar
PCORI Board of Governors MeetingMay 4, 2015, 10:00AM - 5:00PM ET Click here for details.
ISPOR 20th Annual International MeetingMay 16 - 20, 2015, Philadelphia, PAClick here for details.Academy Health Webinar: Methodological Issues in Big Data AnalyticsMay 7, 2015, 2:00 - 3:300 PM ET Click here for details.
October 2015 CEPAC Meeting: Drug Therapies for High Cholesterol October 27, 2015, 10:00 AM - 4:00 PM EDT Click here for details.
North Carolina Translational & Clinical Sciences Institute: Bridges to Advance CERMay 13 - 14, 2015, Research Triangle Park, NCClick here to register.
PCORI Advisory Panel on Improving Healthcare Systems Spring 2015 Meeting May 27 - 28, 2015 Click here for details. Getting to Know PCORI: From Application to Closeout June 22 - 23, 2015, Atlanta, GA Click here for details.
PCORI Advisory Panel on Rare Disease Spring 2015 Meeting May 27, 2015, 9:00 AM - 5:00 PM EDT Click here for details.
9. Medical Journal Articles
Prevalence and Data Transparency of National Clinical Registries in the United States, click here to view.
Exploring the Perspectives and Preferences for HTA Across German Healthcare Stakeholders Using a Multi-Criteria Assessment of a Pulmonary Heart Sensor as a Case Study, click here to view.
The Value of Observational Data in Health Care Decisions, click here to view. Partnering With Patients in the Development and Lifecycle of Medicines: A Call for Action, click here to view. An Assessment of the Methodological Quality of Published Network Meta-Analyses: A Systematic Review, click here to view. Meta-Analysis of Incidence Rate Data in the Presence of Zero Events, click here to view.
Comparative Effectiveness of Antiviral Treatment for Hepatitis B: A Systematic Review and Bayesian Network Meta-Analysis, click here to view. Comparative Efficacy of Novel DMARDs as Monotherapy and in Combination with Methotrexate in Rheumatoid Arthritis Patients with Inadequate Response to Conventional DMARDs: A Network Meta-Analysis, click here to view.
Clinical Heterogeneity of Primary Familial Brain Calcification Due to a Novel Mutation in PDGFB, click here to view.
10. AHRQ Effective Program Updates
Early Diagnosis, Prevention, and Treatment of C. difficile: Update, click here to comment by May 18.
Noninvasive Treatments for Low Back Pain, click here to comment by May 18.
Home-Based Primary Care Interventions, click here to comment by May 25.