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The PIPC Blog

PIPC Weekly Update - July 28, 2014

7/28/2014

 
In This Week’s Issue:
1. PIPC Joins CCD and Others in Commenting on the American Community Survey - Six Disability Status Questions, click here for the full comment. 
2. PCORI: GAO Issues Call for Nominations to Fill PCORI Board Vacancy, click here to view the press release.
3. PCORI: Engagement Funding: New and Continuing Opportunities, click here to view the blog.
4. Bloomberg: Clinical Data Registry Supports Exemption From Common Rule for Big Data Projects, click here to view the article (subscription required).
5. Advance Healthcare Network: The Future of Patient Care, click here to view the article.
6. Fierce Health IT: Patient-Centered Research Key to Pushing Disease Prevention Efforts, click here to view the article.
7. The American Journal of Managed Care: Individual Treatment Effects & How HEOR Departments Use Comparative Effectiveness Research, click here to view the full paper and here to view the video.
8. Financial Times: Big Groups Flex Muscles as Healthcare Industry's Model Shifts, click here to view the article (subscription required).
1. PIPC Joins CCD and Others in Commenting on the American Community Survey - Six Disability Status Questions
The Consortium for Citizens with Disabilities (CCD), PIPC, and 78 other organizations dedicated to supporting those with disabilities signed a letter to Secretary Pritzker of the Commerce Department regarding the American Community Survey's Six disability Status Questions.  The letter stated, “The current six ACS questions have undergone an extensive period of testing that took into account the complex relation that Americans have with ‘ disability,' including issues of stigma, self-identification, and vocabulary.  The way that a question is asked has as much influence over the answer as any objective fact.  Through the use of simple language that emphasizes functional capacity and common activities, the questions as written solicit accurate and useful self-reporting of disability.  Moreover the ACS solicits the most accurate responses because it is intended to be administered to individuals with disabilities, not to heads of a household unit as with a number of other federal surveys such as the Current Population Survey (CPS).”  Click here for the full comment. 

​2. PCORI: GAO Issues Call for Nominations to Fill PCORI Board Vacancy

Late last week, PCORI released a press statement noting their new search for a board member who can represent the research community.  “The U.S. Government Accountability Office (GAO) has issued a call for nominations to fill a seat on the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors recently vacated by Arnold Epstein, MD. Epstein became ineligible to continue on the Board after joining the U.S. Department of Health and Human Services (HHS) as the new Deputy Assistant Secretary and head of the Office of Health Policy in the Office of the Assistant Secretary for Planning and Evaluation. Previously, he had been the John H. Foster Professor and Chair of the Department of Health Policy and Management at Harvard University School of Public Health and a practicing internist at Brigham and Women’s Hospital in Boston.”  Click here to view the press release.

3. PCORI: Engagement Funding: New and Continuing Opportunities

Writing for the PCORI Blog last week, Lia Hotchkiss commented on new coordination awards for PCORI funded projects. “The new award is called Patient-Centered Outcomes Research/Clinical Comparative Effectiveness Research (PCOR/CER) Meeting and Conference Support. It will provide organizations with funding for meetings and conferences that align with our mission and strategic plan and aim to facilitate expansion of PCOR/CER.” Click here to view the blog.

4. Bloomberg: Clinical Data Registry Supports Exemption From Common Rule for Big Data Projects

Alex Ruoff of Bloomberg BNA reported on PCORI Executive Director Joe Selby’s address to the Secretary's Advisory Committee on Human Research Protections. “[Selby] told the SACHRP that patients need to play an active role in any research project, including big data research.[…] PCORnet will share data with nearly a dozen clinical data networks, health-care systems that have agreed to share EHR and other clinical data with researchers, he said. PCORnet will communicate with patients about how their data are used in clinical research, Selby said.” Click here to view the article (subscription required).

5. Advance Healthcare Network: The Future of Patient Care

Last week, Jolynn Tumolo penned a piece for Advance Healthcare Network reporting on nursing’s strong voice within PCORI.  “With the institute's emphasis on efficiency, those involved in PCORI expect it won't be long before its findings begin to drive healthcare practice. And with nursing's emphasis on patient-centered care, it's only fitting that nurses have played a role in driving PCORI from the start. ‘Since it was first constituted Sept. 23, 2010, I have been actively attempting to get nurses involved,’ said Debra Barksdale, PhD, RN, one of 21 members of the institute's board of governors...‘This is something that will definitely impact nurses across all levels. It's something we should keep our eye on.’” Click here to view the article.

6. Fierce Health IT: Patient-Centered Research Key to Pushing Disease Prevention Efforts
Fierce Health IT’s Dan Bowman reported recently about the broader implications of patient-focused disease prevention efforts.  “‘Investing in prevention should be a strategic national priority to help improve the lagging population of the United States compared with peer countries,’ say authors Derek Yach of the New York-based Vitality Institute and Chris Calitz of the Bloomberg School of Public Health at Johns Hopkins University.[…] Patient-centered research efforts could be key for building a case for the cost-effectiveness of prevention interventions, according to Yach and Calitz.”  Click here to view the article.

7. The American Journal of Managed Care: Individual Treatment Effects & How HEOR Departments Use Comparative Effectiveness Research

Jennifer S. Graff, et al, collaborated on a paper published by the American Journal of Managed Care recommending steps that researchers can take to ensure patient-centered research.  “Existing frameworks focus on why patients respond differently to treatments. We propose a framework that identifies when these differences are likely to be clinically important. Scenarios are presented in which it may be most critical for clinical decisions and policies to distinguish between the average and the individual patient so that treatment recommendations provide the greatest benefits for the largest number of patients.”  Click here to view the full paper.

And, in a video posted on their site, Eleanor Perfetto discusses how HEOR departments use comparative effectiveness research.  “[CER] collaborative tools can benefit pharmaceutical companies in a variety of ways. Eleanor Perfetto, PhD, MS, professor, pharmaceutical health services research, School of Pharmacy, University of Maryland, for instance, suggests that CER can be utilized in internal training programs as well as in making research studies translatable to managed care organizations and their leaders.”  Click here to view the video.

8. Financial Times: Big Groups Flex Muscles as Healthcare Industry's Model Shifts

Skip Snow of Financial Times added to the running discussion on Big Data, last week. “The use of big data to create evidence-based medicine is fuelled by the digitalisation of clinical and administrative health records, as well as new technologies to integrate and analyse this information. Hospitals, doctors and administrators will over time more fluidly share and use information. These data allow for a quantitative analysis of care paths and their efficacy in ways never imagined.” Click here to view the article (subscription required).

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