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PCORI Newsletter March 2013

AAMC Patient Centered Research Newsletter

As I See It

In keeping with its intent to include the perspectives of patients and care givers, PCORI recently issued calls for four new Advisory Panels to begin this year (Addressing Disparities; Assessment of Prevention, Diagnosis, and Treatment Options; Improving Healthcare Systems; and Patient Engagement). PCORI reached out to patients, patient advocates, researchers, clinicians and other stakeholders to constitute each of the panels according to their charter. Once formed, each group will have between 12 and 21 members and will provide recommendations to the Methodology Committee and the Board of Governors, in addition to helping PCORI staff plan, implement and refine the patient-centered outcomes research agenda.

PCORI has also initiated a forward-looking mentoring program to coach and learn from peer reviewers invited from patient organizations, caregiver groups and front line clinical staff as they transition into peer reviewer roles. The newly created mentoring program assists participants in learning the basics of scientific peer review, who will then return to their home organizations to teach others.

While there will no doubt be growing pains, the enhanced integration of the perspectives of patients and caregivers into aspects of informing the PCORI board and facilitating the peer review process will create new learning environments for researchers and consumers. This effort should help grow the community of scientifically-informed consumers and patient needs-informed scientists. There could be even broader benefits – including ripple effects to the understanding of the broad scope of research- from the value of fundamental discoveries on which patient-centered outcomes research may have been based - to the science of engaging stakeholders in framing of research questions. As Scott Page explains in his book, The Difference, diverse groups working together on difficult problems have better outcomes. The recent efforts of PCORI focus on inclusion to achieve high quality science for patients and their families.

Ann Bonham, Ph.D.
AAMC Chief Scientific Officer


PCORI Board of Governors Meeting, February 4, 2013

Executive Director Dr. Joe Selby characterized 2012 as the 'year of engagement' and proposed that 2013 will be the 'year of strategic research and investment.' In 2013, PCORI will commit $350 million to research by holding three funding cycles engaging all five priority funding areas. To date, 25 funding awards were made within the targeted funding portfolio during Cycle 1 Initial Targeted PCORI Funding.

PCORI is on track to start dissemination activities, and begin building infrastructure to support PCOR. Two major meetings took place at the end of 2012; the multi-stakeholder meeting that generated 493 questions for PCORI to consider in identifying key research questions; and the methodology workshop for prioritizing special research topics.

Dr. Selby announced the 'PCORI Challenge' designed to match patients and other non-scientific stakeholders with researchers. Participants in the program may receive seed money in the form of micro-contracts to assist with further development of the patient-stakeholder-researcher relationship.

A full meeting report is available on the Research on Care Community website.

New PCORI Report

PCORI published an article in Health Affairs last month, focused on their process for gathering input from the health care community, including caregivers, patients and clinicians. The article, titled "How The Patient-Centered Outcomes Research Institute Is Engaging Patients and Others in Shaping Its Research Agenda," describes the role of the broader community in identifying and selecting topics for funding, and participation in research design.

Announcements and Ad Hoc Workgroups

Two additional topics were added to the Targeted Funding Announcements since the last Board meeting. The two new areas are; Treatments Options for Back Pain and Obesity Treatment Options in Diverse Populations. The Board approved the additional areas which now brings the total topics to five.

The Ad Hoc workgroups began in March, with three meetings and more to follow in the following months. A sample agenda of these meetings was shared with the Board, and will consist of a webcast wherein audience members can ask questions. The goal of this format is to solicit expert participation beyond those participants selected to be on the Ad Hoc groups. Groups will consist of 12-18 members, and these members will not be precluded from seeking funding with PCORI. The Ad Hoc groups will be publicized beginning this month, open to stakeholders and summaries posted on the website post-meeting. Recommendations from the Ad Hoc groups will be reviewed with the Board. Targeted funding announcements are anticipated by June, and proposals would be due in November.

Comparative Effectiveness Research

The Brookings Institute recently publicized two videos concerning comparative effectiveness research (CER) that had been originally released in 2009. Senator Max Baucus and Mark McClellan, M.D., director of the Engelberg Center for Health Care Reform, each offered views on the benefits of CER. In video clips, Sen. Baucus comments on the potential of CER to reform the U.S. health care system, and Dr. McClellan offers his view that CER research can improve both costs and outcomes of healthcare.

Data and Patient Heterogeneity

Marc Berger, MD. writing in the Journal of Comparative Effectiveness Research considers the role of CER on outcomes research and patient centeredness. Berger reflects on the benefit to research of large data sets made available through electronic health records, noting that the hierarchy of evidence created by clinical trial methodologies has the ability to impact health policy and should be carefully considered.

Epidemiology and CER

Moving the value of CER outside of medical centers and pharmaceutical studies, Jessica Chubak, Ph.D. describes the role of epidemiology in performing studies that are generally identified as CER in the current nomenclature. In the Journal of Epidemiology and Community Health, Dr. Chubak reviews study designs frequently used in epidemiological studies, and compares the areas of similarity between the two disciplines, such as the value of real world data, and attention to generalizing findings.

Evidence Based mHealth

Mobile health platforms hold potential to positively influence health outcomes through providing easy access to health information and a quick interface with providers. In "2013: Let's hope it's a year of evidence for mHealth", Greg Slabodkin opines on the lag between promise and evidence so far, noting the continued search for rigorous studies linking use to improved outcomes, that would support increased use of mobile health interfaces on a wide-spread basis. The article links to two recent reports that highlight a lacking evidence base for mobile health.

Evidence for Change

The Choosing Wisely initiative of the ABIM Foundation recently released new lists of tests and procedures that physicians and patients should question "in recognition of the importance of physician and patient conversations to improve care and eliminate unnecessary tests and procedures." The lists, most of which were developed by specialty societies, "represent specific, evidence-based recommendations physicians and patients should discuss to help make wise decisions about the most appropriate care based on their individual situation. Each list provides information on when tests and procedures may be appropriate, as well as the methodology used in its creation." More than 35 specialty societies have now joined the campaign, and 17 unveiled new lists on Thursday.

The American Academy of Family Physicians (AAFP) asks 'Will Docs Go Where the Evidence Leads?' in a blog discussion of the gap between evidence and practice. Citing well known examples of overuse or misuse of testing, such as mammograms in the over-75 set paid for by Medicare, AAFP ponders why physicians' practices' are at times out of touch with research evidence. AAFP mentions PCORI as a promising source of evidence on treatment options for physicians to share and discuss with patients, yet barriers such as the fee for testing structure, remain impediments to adoption of practice patterns based on outcomes evidence.

EHR Based Research Results in Improved Resource Management

Marla Durben Hirsch reports on results from a University of Michigan study looking at the use of EHRs to more accurately predict which patients will benefit from a stay in the ICU. Information matching care with outcomes can help hospitals target expensive resources more appropriately, and ensure that those patients who most need complex care can actually get it.

Final rules updating the Health Insurance Portability and Accountability Act (HIPAA) regulations

The four rules are:

1.     Modifications to the HIPAA Privacy, Security, and Enforcement Rules mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act.

2.     Changes to the HIPAA Enforcement Rule to incorporate the increased and tiered civil money penalty structure provided by the HITECH Act.

3.     Final rule on Breach Notification for Unsecured Protected Health Information under the HITECH Act, which replaces the breach notification rule's 'harm' threshold with "a more objective standard."

4.     Modifications to the HIPAA Privacy Rule as required by the Genetic Information Nondiscrimination Act (GINA) to prohibit most health plans from using or disclosing genetic information for underwriting purposes.

Integrating Quality Improvement and Patient Safety across the Continuum of Medical Education

A new report from an expert panel provides an overview of the current state of teaching quality and safety, competencies for faculty, and recommendations for enhancing these programs. The report calls for the creation of a national faculty development initiative to train faculty as quality improvement educational experts and to teach health care improvement within the nation's medical schools and teaching hospitals. "Teaching for Quality: Integrating Quality Improvement and Patient Safety Across the Continuum of Medical Education" is part of Teaching for Quality (Te4Q) -- the medical education effort of the Best Practices for Better Care campaign, an initiative sponsored by AAMC and University Health Consortium designed to improve the quality and safety of health care.

Articles of interest

The new issue of American Medical News discussed sloppy cutting and pasting in the electronic health record, sometimes leading to confusion and endangering patients.

An essay in the New York Times on February 1 discussed the suppression of clinical trial results by industry. On February 8, the New York Times featured two letters on the essay, one from an industry trade association.

A recent report from the Congressional Budget Office highlighted what the NY Times called, "A sharp and surprisingly persistent slowdown in the growth of health care costs..." The budget office now projects that spending on those two programs in 2020 will be about $200 billion, or 15 percent, less than it projected three years ago. New data also show overall health care spending growth continuing at the lowest rate in decades for a fourth consecutive year." The paper added, "Health experts say they do not yet fully understand what is driving the lower spending trajectory. But there is a growing consensus that changes in how doctors and hospitals deliver health care - as opposed to merely a weak economy - are playing a role."

A viewpoint essay in the Journal of the American Medical Association (JAMA) discussed "Community Research Partnerships: Underappreciated Challenges, Unrealized Opportunities." The authors discuss some of the legal and compliance challenges facing academic medical centers in building such networks and some potential solutions.

JAMA Internal Medicine has released an article on the difficulty consumers have in discovering the price of hip replacement surgery". According to the article, only about half of the hospitals contacted could provide any sort of price estimate. Of those that did provide an estimate, the quotes varied by a factor of more than 10, with the range from $11,100 to $125,798.


Teleconferences on Target Research Areas

During March and April, 2013, PCORI will webcast a series of workgroups consisting of researchers, patients and other stakeholders to identify critical research questions within each topic that should be answered. Researchers and others are invited to submit questions in advance of these meetings, for the workgroups to consider. More information and workgroup meeting dates are available on the PCORI website.

Use of Observational Studies in PCOR

April 24 and 25, 2013 PCORI and the IOM will co-host a meeting to consider the use of observational studies in developing PCOR. In response to concerns about the rigor of observational methodology in comparison to random control trials (RCT), the meeting will analyze the usefulness of observational studies for patient centered research in particular.

Understanding Patient Centeredness in Research

A workshop in Baltimore Md. on June 25, 2013 with Academy Health, will train researchers on understanding patient centeredness in terms of research proposals and what types of research PCORI is soliciting. The workshop will help researchers clarify what patient engagement in research might look like, in order to comply with PCOR standards on applications.


Northwestern University Feinberg School of Medicine is announcing the availability of faculty positions in its Center for Patient-Centered Outcomes. Link to position descriptions below.


Of Interest

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