1. PIPC: State on GAO Report on PCORI, Click here to view.
2. Statement on GAO Report on Dissemination of CER and Data Capacity, click here to view the statement.
3. Health IT Analytics: Can Healthcare Effectively Measure Patient Engagement? Click here to view.
4. NHC: March 20 Understanding Patient Needs and the Health Insurance Marketplace, Click here to register.
5. M-CERSI Conference on Patient-Focused Drug Development, additional information can be found here.
6. Health Affairs Blog: Reconciling Prevention And Value In The Health Care System, click here to view.
7. Forbes Column: Let Medicare Patients Decide Which Accountable Care Organization To Join, click here to view.
8. NIH Director Sees Solving Data Puzzle as Key to U.S. Precision Medicine, click here to view.
9. PCORI: Reducing the Burden of Kidney Disease, click here to view the full blog
10. Healthcare Informatics: Digging Out of a Hole: The Two Sides of Patient Engagement, click here to view the full article.
11. PCORI: Putting Research to Work for Individual Patients, click here to view the full blog.
12. New York Times: If Patients Only Knew How Often Treatments Could Harm Them, click here to view the full blog.
13. AHRQ Research Conference Returns in 2015, click here for details.
On March 9, 2015, the Government Accountability Office (GAO) released a review of PCORI’s activities as mandated by law. The Chairman of the Partnership to Improve Patient Care (PIPC), former Congressman Tony Coelho, stated: "PIPC remains vigilant in its efforts to ensure that PCORI’s work improves health care decision-making, and therefore is pleased that the GAO’s review of PCORI concluded that it is meeting its legislative mandate. Although the report acknowledged stakeholder concerns that PCORI’s research priorities are too broad and lack specificity, I am pleased that the GAO found that PCORI has been responsive to PIPC and others by better utilizing advisory panels to identify more specific research questions and topics. The report also acknowledged inherent challenges to measuring changes in health care delivery and practice that are attributable to PCORI-funded research. PIPC hopes that PCORI will consider the recommendations we provided last year to more immediately evaluate the impact on its mission to “do research differently” by engaging patients in research, which will create evidence that is usable to patients and clinicians. PIPC’s members are dedicated to PCORI’s success and look forward to remaining an engaged and active partner in PCORI’s work." Click here to view the full PIPC statement. Click here to view the GAO report.
PCORI’s Board Chairman Dr. Gray Norquist stated, “...‘PCORI leadership and staff are very pleased to see the GAO affirm that we have met the requirements set forth in PCORI's authorizing legislation, the Patient Protection and Affordable Care Act (PPACA), to establish priorities, programs, and processes that will enable us to fulfill our mission to produce evidence-based information that will enhance healthcare decisions,’ Norquist said.” Click here to view the press release
Fierce Health IT reported “...Plans call for PCORnet to combine the resources of 11 Clinical Data Research Networks (CDRNs)...and 18 Patient-Powered Research Networks (PPRNs) formed by patient groups...PCORI officials and other stakeholders, however, ‘expect that the process of mapping data to the common data model will be slow and resource intensive because of the lack of standardization among existing data maintained by CDRNs and PPRNs, such as data from electronic health records,’ according to the [GAO] report.” Click here to view the article.
2. PIPC: Statement on GAO Report on Dissemination of CER and Data Capacity
The Government Accountability Office (GAO) released a report yesterday entitled, “Comparative Effectiveness Research: HHS Needs to Strengthen Dissemination and Data-Capacity-Building Efforts.” The Chairman of the Partnership to Improve Patient Care (PIPC), former Congressman Tony Coelho, provided the following response to the report’s findings and recommendations:
“PIPC is pleased that GAO has evaluated some of the key issues in HHS’ use of comparative effectiveness research (CER) funds, particularly related to dissemination of research findings. The report highlights some of the same issues that PIPC has identified with AHRQ's CER dissemination activities, and the critical need for the agency to establish a strategic plan, standards, and procedures to advance new, patient-centered approaches to CER dissemination.
In a White Paper developed by PIPC in October 2013, we highlighted that the Agency for Healthcare Research and Quality (AHRQ) appeared to be using funds from the Patient-Centered Outcomes Research Trust Fund to support its existing dissemination programs, rather than defining new, more effective programs for communicating results to patients and clinicians. PIPC convened a roundtable with patient representatives and clinicians in June, 2014, where participants raised significant concerns about the quality of the information going into AHRQ’s decisions aids, and AHRQ’s effectiveness in disseminating those decision aids into the community. In addition, the PIPC roundtable participants strongly recommended that AHRQ use PCOR Trust fund dollars to test dissemination strategies that differ from their existing comparative effectiveness program so that they address the patient-centered principles outlined in their statutory guidance and better engage the communities that benefit from the information provided. PIPC is hopeful that the GAO report will provide impetus for implementation of some of these recommendations, such as creation of standards for patient-centeredness in CER dissemination, and establishment of a patient and clinician advisory committee and other mechanisms to gain input from patients throughout the process. The time is now to move beyond conventional, one-size-fits-all dissemination strategies and adopt new approaches that allow patients and clinicians to be engaged as advisors to disseminate specific information, and to be partners in tailoring and presenting it in a useable manner. PIPC looks forward to being engaged in an effort to do something different so that our healthcare system empowers patients in their own health care decisions, as was the intent of the statute." Click here to view the statement.
Also commenting on the GAO report, Laura Joszt of The American Journal of Managed Care said, “CER could help patients and providers make better healthcare decisions by providing more complete clinical information; however, the availability of this information remains limited. ‘Disseminating CER in a timely manner is particularly challenging given the length of time and uncertainty inherent in applying research findings to help improve health care practice,’ the authors of the [GAO] report wrote.” Click here to view the full article.
Susan D. Hall of Fierce Health IT wrote about the same report, “[W]hile HHS has coordinated various agencies to build data capacity for CER, its approach is not effective because it lacks defined objectives, milestones and time frames, the [GAO] report's authors add. Better timing and coordination are necessary to prevent duplication and effective use of resources in working together with other projects such as the Patient-Centered Outcomes Research Institute (PCORI) PCORnet initiative.” Click here to view the full article.
3. Health IT Analytics: Can Healthcare Effectively Measure Patient Engagement?
An article from HealthITAnalytics referenced a PIPC Roundtable on Evaluation conducted in 2014 while discussing the recent GAO report on PCORI. “And time isn’t the only problem. Understanding what patient engagement really is, what level of engagement is necessary to produce meaningful outcomes, and how to bring successful strategies into the clinical workflow are questions that can’t be answered without some amount of data. But what metrics can really define the impact of a patient using a fitness tracker to lose weight, emailing with a nurse to get a referral to a psychologist for depression, or dialing in to a telehealth service for help with her blood sugar control?
“The Partnership to Improve Patient Care (PIPC), while discussing PCORI’s influences last year, raised the same query. How can you measure bad outcomes that don’t happen because they were prevented by preemptive actions?
“At a roundtable discussion, “an analogy was presented of the New York Police Department seeking to lower crime, but measuring numbers of arrests and reported crimes, which were inputs that did not necessarily indicate the output of lower crime,” PIPC says. ‘Since the outcome the city wanted to achieve was lower crime, the police became accountable for lower crime rates as opposed to counting inputs such as numbers of arrests and crime reports. And as a result, crime went down.’” Click here to view the article.
4. NHC: Understanding Patient Needs and the Health Insurance Marketplace
The National Health Council (NHC) will hold a special briefing on Friday, March 20, at 10:00 a.m. at the Capital Hilton, 1001 16th Street NW, Washington, DC, to hear the results of a national study on people living with chronic diseases and disabilities, their experiences purchasing health insurance through the exchanges, and what changes they want in the marketplace to help them find insurance plans that meet their budget and health needs. Click here to register.
5. M-CERSI Conference on Patient-Focused Drug Development
The M-CERSI Conference on Patient-Focused Drug Development (PFDD) will be held on Today, March 9, 2015 at the Hyatt Regency Hotel in Bethesda, MD. Patients, caregivers, and patient-advocacy groups, as well as regulators from the Food and Drug Administration; researchers from academia, industry, and other agencies; payers; and other stakeholders will come together to discuss the definition of PFDD, essential components for a successful PFDD, current related initiatives, challenges, and recommendations on a plan of action. Registration is free, but required. Additional information can be found here.
6. Health Affairs Blog: Reconciling Prevention And Value In The Health Care System
Authors in the Health Affairs Blog stated, “...Increasingly, payers are adopting value-based purchasing programs (paying more for higher value care) and providing benefits that follow the principles of value-based insurance design (aligning patient cost-sharing with the value of the service). These programs typically focus on services widely regarded as relatively low-cost and clinically effective, such as beta-blockers prescribed for patients following a myocardial infarction (i.e. heart attack).” Click here to view the blog.
7. Forbes Column: Let Medicare Patients Decide Which Accountable Care Organization To Join
An opinion in Forbes commented “...Instead of Fee-For-Service (FFS), Medicare planners and their academic supporters endorse various bureaucratic methods of paying for ‘value’ – as perceived by the government...One loudly trumpeted tool to create value in Medicare is the Accountable Care Organization (ACO). Unfortunately, ACOs are underwhelming and soon likely to fall off the radar screen.” Click here to view.
8. NIH Director Sees Solving Data Puzzle as Key to U.S. Precision Medicine
Reuters reports “One of the earliest tasks in President Barack Obama's $215 million ‘precision medicine’ program will be finding a way to piece together data from a hodgepodge of existing studies, said Dr. Francis Collins, director of the National Institutes of Health. Several providers already undertaking such studies have expressed interest in participating in the program, which will gather loads of health information and genetic data on more than 1 million Americans to develop targeted medicines…” Click here to view.
9. PCORI: Reducing the Burden of Kidney Disease
In the PCORI Blog, David Hickam, Science Program Director, commented “PCORI is funding a wide variety of studies to learn how to reduce the burden of kidney disease on patients and those who care for them. We are working in conjunction with patient organizations, including the National Kidney Foundation (NKF), which has helped recruit patients for one of the studies we fund. NKF's Tonya Saffer says that the foundation is pleased to see PCORI funding research on kidney disease, and especially appreciates our focus on directly involving patients and patient organizations in preparing proposals and carrying out projects.” Click here to view the full blog.
10. Healthcare Informatics: Digging Out of a Hole: The Two Sides of Patient Engagement
Writing for Healthcare Informatics, Gabriel Perna reported, “The federal government is heavily pushing the path to patient-centered care, making this even more of a necessity for providers. It's all over various policy measures, with it being referenced in the Affordable Care Act (ACA) specifically 36 times. It's also in meaningful use, the Centers for Medicare and Medicaid Services' (CMS) Patient-Centered Outcomes Research Institute (PCORI) funded research, Hospital and Physician Compare, and the Veterans Administration. Much of this comes from value-based reimbursement models, which reimburse based on quality outcomes.” Click here to view the full article.
11. PCORI: Putting Research to Work for Individual Patients
During the snowstorm that hit the mid-Atlantic last week, Emily Evans, and Katherine McQueston, Science Program Officer and Program Associate, respectively, said in The PCORI Blog, “[PCORI’s] authorizing legislation requires us to study the effects of health interventions for different patient subpopulations. This is known as research on the heterogeneity of treatment effects (HTE), and we consider it an essential component of the patient-centered comparative clinical effectiveness research (CER) we support. The results of HTE analyses can be used to develop care programs designed to provide the treatment most likely to be effective for a particular patient—a step toward personalized medicine.” Click here to view the full blog.
12. New York Times: If Patients Only Knew How Often Treatments Could Harm Them
Austin Frakt and Aaron E. Carroll of The New York Times’ blog, The Upshot, said this last week, “If we knew more, would we opt for different kinds and amounts of health care? Despite the existence of metrics to help patients appreciate benefits and harms, a new systematic review suggests that our expectations are not consistent with the facts. Most patients overestimate the benefits of medical treatments, and underestimate the harms; because of that, they use more care.” Click here to view the full blog.
13. AHRQ Research Conference Returns in 2015
AHRQ’s research conference, held annually from 2007 to 2012, will make a return engagement in 2015. The conference is scheduled for October 4–6 at the Crystal Gateway Marriott Hotel and Convention Center in Crystal City, Virginia. AcademyHealth will join AHRQ in hosting the conference, which will bring together experts in health care research and policy to participate in sessions focused on addressing today’s challenges in improving quality, safety, access and value in health care. In addition, AHRQ and AcademyHealth will team with the Patient-Centered Outcomes Research Institute (PCORI) to hold sessions on October 6 as part of the AHRQ conference as well as PCORI’s first annual meeting October 6–8, which also will be held at the Crystal Gateway Marriott. These sessions will address key issues in dissemination and implementation of patient-centered outcomes research. Mark your calendars; information about submitting abstracts, registration, the conference agenda and more will be coming soon. Click here for details.