1. PIPC Executive Director Participates in PCORI Advisory Panel on Patient Engagement, click here for slides from the discussion.
2. PCORI Board of Governors Approves $5M in Outcomes Measurement Funding, click here for slides from the Board presentation.
3. ONC: Using Health IT to Put the Person at the Center of Their Health and Care by 2020, click here to view the issue brief.
4. PCORI Blog: On Contracts: Preparing Your Application for an On-Time Submission, click here to view the blog post.
5. Center for Data Innovation: Building the Data Infrastructure for Comparative Effectiveness Research, click here to view the article.
6. How Does Patient Engagement Transform into Useful EHR Data?, click here to view the article.
7. MedCity News: What Is One Things Politicians Could Do to Improve Healthcare in the U.S.?, click here to view the article.
8. NCBDDD 2014 Research Funding Opportunities, application instructions are available here.
Sara van Geertruyden, Executive Director of PIPC, participated in the meeting of the PCORI Patient Engagement Advisory Panel on January 13-14, 2014. The panel discussed the following topics:
•Patient and Family Engagement Rubric - The rubric is to provide guidance to applicants, merit reviewers, awardees and engagement/program officers (for creating milestones and monitoring projects) regarding patient and family engagement in the conduct of research. It is not intended to be comprehensive or prescriptive. Panel members expressed the need for the rubric to not just rely on best practices but to also capture innovation. The rubric will be incorporated into the next cycle of PFA's from PCORI.
•Pipeline to Proposal Awards - Details on those awarded are available in the slides.
•Engagement Awards - PCORI is making awards in the following areas: Support knowledge of PCORI’s work, and inform about our program efforts, provide training and development of “non-usual suspects” and others, and disseminate the results of our research to promote implementation into practice. PCORI plans to award up to $250,000 total for up to 2 year projects. Project concepts provided in a Letter of Intent can be submitted on a rolling basis and will be reviewed periodically through the year. Examples of awards given include the already awarded National Academy of State Health Policy to uncover gaps in knowledge and determine PCOR/CER needs, a pending award to the PhRMA Foundation for a conference seeking toinfluence development of PCOR training in several academic medical settings identified as leaders in the conduct of PCOR, and a pending award for a Primary Care Physician Survey looking at physician use and understanding of PCOR/CER. The program launch will be held on February 13, 2014.
•Evaluation - PCORI has convened an Evaluation Workgroup to consider how it evaluates the range of its work, such as engagement by awardees, the application process, merit review, PCORI events, and PCORnet.
•Parity in Compensation in Research - PCORI staff noted that they have fielded many questions related to what it means to appropriately compensate patients for the engagement in research. The panel members consistently expressed the need for compensation to be meaningful to encourage patient participation, but not to be coercive.
•Ambassadors Program - This is a volunteer initiative that trains, equips, and mobilizes patients, caregivers, organizations and other stakeholders to share PCORI’s vision, mission and PCOR principles with their respective communities, participate as full partners in research and to help assure the sharing and uptake of information generated from PCORI funded projects.
•PCORnet - Achieving a single functional research network is the goal. Awards were made in every state last December to both Patient Powered Research Networks and Clinical Data Research Networks. The panel discussed issues of enrollment and diversity, governance, data collection and access, and data interoperability, sharing and privacy.
•Patient-centered metrics for measuring PCORI's success - Panel members discussed how to measure success both in engagement throughout the research process and in dissemination.
Slides from the panel discussion are available here.
2. PCORI Board of Governors Approves $5M in Outcomes Measurement Funding
Last week, the Patient-Centered Outcomes Research Institute’s (PCORI) Board of Governors met to consider for approval Patient Reported Outcomes Measurement Information System (PROMIS) funding. The Board voted to approve $5 million to fund research that advances PROMIS within the patient centered framework of PCORI’s mission. The grants will consist of a maximum $500,000 for two years. Prior to approval, members of the board confirmed that the research will be conscious of “patient and parent centeredness.” They also affirmed that the infrastructure for PROMIS, administered by the National Institutes of Health (NIH), will be in place for the duration of the grant cycle (four years). Presentation slides can be found here.
3. ONC: Using Health IT to Put the Person at the Center of Their Health and Care by 2020
According to the Office of the National Coordinator for Health Information Technology, "The Affordable Care Act of 2010 directs the U.S. Department of Health and Human Services (HHS) to build data capacity for patient-centered outcomes research (PCOR), and makes available a cumulative estimated total of almost $200 million between FY 2011 and FY 2019 for this purpose through the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS PCORTF). The Office of the Assistant Secretary for Planning and Evaluation (ASPE) coordinates this effort and has partnered with the ONC as well as other HHS agencies to develop a strategy to maximize the OS PCORTF’s impact. Funding from the OS PCORTF is expected to result in the development of a comprehensive, interoperable and sustainable PCOR data network infrastructure. Ultimately, a PCOR data infrastructure is expected to facilitate research that will generate knowledge for evidence-based decision making for health care and empower patients to make informed decisions related to the specific health outcomes they seek...As public sector agencies develop their strategic plans and health reform begins to change how providers and patients interact, there are opportunities for a more person-centered paradigm to take hold." The issue brief identifies the following opportunities for progress: access, use of data, integration with life, communication, learning, and partnering with care team. Click here to view the issue brief.
4. PCORI Blog: On Contracts: Preparing Your Application for an On-Time Submission
Scott Solomon, PCORI’s Director of Contracts Management, and James Hulbert, PCORI’s Pre-Award Manager, recently commented on The PCORI Blog, “Applications for the Winter 2014 cycle of PCORI funding are due Tuesday, January 21 at 5:00 p.m. (ET). We recognize that our application submission system, PCORI Online, differs from those of other research funding agencies. To help applicants navigate the system, we've developed a user manual that we encourage you to consult when preparing and submitting your application.” Clickhere to view the blog post.
5. Center for Data Innovation: Building the Data Infrastructure for Comparative Effectiveness Research
In a recent article for the Center for Data Innovation, Travis Korte comments, “[CER] is often limited by a lack of readily available data, meaning researchers must conduct costly ad-hoc data collection efforts even for basic studies. With PCORnet's centralized pool of data, researchers will be able to easily pull information on millions of patients, across different ages, ethnicities and socioeconomic status, who have agreed to participate in research. This ease of access to data will accelerate the pace of comparative effectiveness research.” Click here to view the article.
6. How Does Patient Engagement Transform into Useful EHR Data?
In an article published in EHR Intelligence, Dr. Kyle Murphy reports, “The most recent wave of top-down support for patient engagement came from [PCORI], which awarded $93.5 million for the creation of 29 clinical research data networks that will combine to form its National Patient-Centered Clinical Research Network (PCORnet). We know that patients aren't homogenous; we know that there's a range of opinion. These kinds of tools give us the chance to continue to appreciate the diversity of ideas and opinions and avoid trying to just get to the one or the two leading ideas but really to think.” Click here to view the article.
7. MedCity News: What Is One Things Politicians Could Do to Improve Healthcare in the U.S.?
Dr. John Mandrola, recently commented in an article for MedCity News, “Doctors don't know enough about their therapies; patients don't know their options. Both parties assume more is better; that action is better than inaction. We don't know enough because we haven't asked the right questions. This is why patient-centered Comparative Effectiveness Research holds such great promise. Yes, it's a new idea, and the entrenched culture of medicine will not change easily, but it can, and it will… At the core of these ineffective wasteful treatments were deficits in knowledge. We meant well, but we didn’t know. Comparative effectiveness research will teach both patients and doctors alike. That’s a win-win.” Clickhere to view the article.
8. NCBDDD 2014 Research Funding Opportunities
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) recently announced the availability of six new funding opportunities for 2014. According to a release, “the DRDC conducts research related to the priorities of CDC’s NCBDDD through research grant sub-awards to university and other academic and professional partners that utilize medical, social and basic science, and public health approaches. Information about the newly announced 2014 current research opportunities is available here. All research applications for the RFA’s must be submitted through the DRDC website; application instructions are available here.