1. PCORI Board Approves Slates for Clinical Trials and Rare Disease Advisory Panels, click here for the full recap, here for the PCORI press release of rare disease panel, and here for the PCORI press release on the clinical trials advisory panel.
2. U.S. Chamber of Commerce Discusses Recommendations on Transparency, click here to view the report.
3. Health Affairs: PCORI’s Research Will Answer Patients’ Real-World Questions, click here for the full post.
4. PCORI Blog: New Challenge: An App to Build Research Partnerships, click here for the full blog post.
5. Washington Post: A Common Problem Few Women Want To Talk About: Fibroids Cause More Than Just Pain, click here for the full article.
6. GAO Seeks Nominations for PCORI Methodology Committee, click here to see the press release.
7. Toby Bloom on the New York Genome Center's Crystallizing Clinical Vision, click here for the full article.
The Patient-Centered Outcomes Research Institute (PCORI) held a teleconferenced Board meeting last week to review and approve several policies and advisory panels. Among their deliberations the Board approved slates for the Clinical Trials Advisory Panel and the Rare Diseases Panels. With regard to ad hoc advisory panels formed in the future for specific clinical trials and rare diseases research projects, Ellen Sigal pointed out the need to ensure appropriate inclusion of disease experts, and another Board member added that there is a need to include specific methodological experts as well. Dr. Selby responded that the Chair of the umbrella committees on Clinical Trials and Rare Diseases will have the authority to select such experts for the ad hoc advisory panels for specific projects. Click here for the full recap. To view PCORI’s press release on the Clinical Trials Advisory Panel click here, and for the Rare Disease Panel click here.
2. U.S. Chamber of Commerce Discusses Recommendations on Transparency
Last week, the U.S. Chamber of Commerce held a forum to discuss recommendations—specifically with respect to transparency—included in the Chamber’s June 2013 Health Care Solutions Council (“Solutions Council”) report. This event was the first in a series of four exploring the recommendations of the report. As discussed during the briefing, the report offered by the Solutions Council includes several recommendations for achieving greater transparency throughout the health care system, including: 1) promoting the use of consistent quality measures; 2) public availability to Medicare summary data; 3) federal government support for provider quality data initiatives; and 4) increased consumer awareness of service costs, and best practices in helping consumers choose health plans. Click here to view the report, and here for more detailed summary of the forum.
3. Health Affairs: PCORI’s Research Will Answer Patients’ Real-World Questions
PCORI Executive Director Joe Selby wrote a guest blog for Health Affairs last week: “As a physician, I know the challenge of helping patients determine which health care options might work best for them given their personal situation and preferences. Too often they — and their clinicians — must make choices about preventing, diagnosing and treating diseases and health conditions without adequate information. The Patient-Centered Outcomes Research Institute (PCORI) was created to help solve this problem — to help patients and those who care for them make better-informed health decisions.” Click here for the full blog post.
4. Blog: New Challenge: An App to Build Research Partnerships
In an earlier blog last week, PCORI’s Orlando Gonzales and Jean Slutsky both called on app developers to aid in the CER technology surge, “Today we launch the PCORI Matchmaking App Challenge, our newest initiative to encourage research partnerships [...] We are inviting developers to create a fully functioning, ready-to-publish app and companion website that will facilitate the creation of partnerships between those interested in conducting patient-centered outcomes research.” Click here for the full blog post.
5. Washington Post: A Common Problem Few Women Want To Talk About: Fibroids Cause More Than Just Pain
Erin N. Marcus wrote an article for the Washington Post regarding a new grant from PCORI to study fibroids in minority women. “By age 50, about seven out of 10 white women and more than eight out of 10 black women in the United States have a condition about which they may not even be aware: fibroids, or noncancerous tumors in the muscles of the uterus […] Fibroid researchers hope that a $20 million research initiative by the Patient Centered Outcomes Research Institute, which was created as part of the Affordable Care Act, will help answer women’s questions about their treatment options. Stewart and other scientists hope this initiative will also improve understanding of how to prevent fibroids as well as why women with fibroids appear to have an increased risk of high blood pressure and heart disease. Click here for the full article.
6. GAO Seeks Nominations for PCORI Methodology Committee
In a press release last week, “the U.S. Government Accountability Office (GAO) has issued a call for nominations to fill four open seats on the Methodology Committee of the Patient-Centered Outcomes Research Institute (PCORI)...GAO will accept letters of nomination and resumes submitted via either email or mail by Friday, April 11.” Click here to see the press release.
7. Toby Bloom on the New York Genome Center's Crystallizing Clinical Vision
In an article by Allison Proffitt and published in Bio-IT World, Ms. Proffitt reports, “For example, NYGC and six other large medical institutions in New York have a contract from PCORI [...] to merge all of the de-identified patient medical records from the hospitals. The goal is to share the data with other PCORI sites around the country, [Toby Bloom, the Center's Deputy Science Director, Informatics] says. Initially the collection should enable large retrospective studies of clinical data, but she hopes that genomic data will one day be incorporated and that prospective studies can be done.” Click here for the full article.