1. TODAY at 2pm EST: PIPC’s Patient Empowerment Webinar, click here to view the webinar.
2. PCORI Seeking Nominations to Advisory Panels by February 6, click here to view the announcement.
3. Huffington Post: Top 10 Medical Research Issues and Trends to Watch in 2015, click here to view the article.
4. AcademyHealth: "Evidence Roadmaps" Launched in Response to Medicare Listening Report, click here to view the article.
5. NEJM: Addressing the Challenge of Gray-Zone Medicine, Ethically Influencing Referrals in ACOs, see details below.
6. Kaiser Permanente: International Efforts to Improve Quality and Efficiency in Health Care, click here to view the article.
7. PCORI in the News, see details below.
8. PCORI Blog Posts: Review Panels, Obesity, Elderly Falls, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
2. PCORI Seeking Nominations to Advisory Panels by February 6, click here to view the announcement.
3. Huffington Post: Top 10 Medical Research Issues and Trends to Watch in 2015, click here to view the article.
4. AcademyHealth: "Evidence Roadmaps" Launched in Response to Medicare Listening Report, click here to view the article.
5. NEJM: Addressing the Challenge of Gray-Zone Medicine, Ethically Influencing Referrals in ACOs, see details below.
6. Kaiser Permanente: International Efforts to Improve Quality and Efficiency in Health Care, click here to view the article.
7. PCORI in the News, see details below.
8. PCORI Blog Posts: Review Panels, Obesity, Elderly Falls, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. TODAY at 2pm EST: PIPC’s Patient Empowerment Webinar
It’s not too late to get the word out to your networks and colleagues! As a reminder, the PIPC webinar – an online event focusing on the importance of patient engagement in their own healthcare and in health policy - will be streamed on the PIPC website at 2:00 pm ET today, Tuesday. Simply click here to access it on your computer or mobile device. If you have not yet RSVP’d, please email jgolibart@thornrun.com to let her know that you plan to attend. Those that are unable to access the event on a computer or mobile device can also call in at:
US Toll Free: 1-888-490-6951 International: 1-630-424-7872 Meeting ID: 6883859#
Included in the agenda for the webinar:
We will highlight stories from two individual patients: Ms. Laura Roix, an idiopathic pulmonary fibrosis (IPF) patient (click here to view her story) and Ms. Letitia Brown-James, an epilepsy patient (click here to view her story).
PIPC’s Executive Director, Sara van Geertruyden, will discuss the components of a patient-centered health system, and the importance of empowered patients to drive policies that are responsive to their unique and individual health care needs.
Tony Coelho will moderate the discussion, providing his perspective based on decades of experience as an epilepsy patient, a Congressman, and a life-long patient-advocate.
2. PCORI Seeking Nominations to Advisory Panels by February 6
As a reminder, the Patient-Centered Outcomes Research Institute (PCORI) announced that it is accepting nominations for its Advisory Panels for terms beginning in 2015. We urge you to help PCORI identify great candidates!
Specifically, it is seeking nominations to fill:
•Up to four positions on the Assessment of Prevention Diagnosis, and Treatment Options panel;
•Up to five positions on the Improving Healthcare Systems panel;
•Up to six positions on the Addressing Disparities panel;
•Up to six positions on the Patient Engagement panel, including caregivers and patient organizations; and
•One position on the Rare Diseases panel.
The Panels are seeking patients (including patient representatives and caregivers), clinicians, researchers, industry representatives, and payers to advise PCORI on the issues listed above. Terms are three years except for on the Rare Diseases panel where they are one to two years. Panelists are expected to follow the PCORI's Conflict of Interest Policy and to attend two to four in-person meetings in Washington, D.C. and additional meetings remotely. Applications are due February 6, 2015. Click here to view the announcement.
3. Huffington Post: Top 10 Medical Research Issues and Trends to Watch in 2015
In the Huffington Post, Margaret Anderson commented, “Will 2015 be the year we all move beyond lip-service to "patient-centeredness" and start building the science around patient-reported outcomes, benefit-risk, and value and coverage - in partnership with patients rather than on their behalf?...The Patient-Centered Outcomes Research Institute and FDA's Center for Devices and Radiological Health are leading the way to incentivize patient-centered approaches to clinical effectiveness research and medical device design and regulation.” Click here to view the article.
4. AcademyHealth: "Evidence Roadmaps" Launched in Response to Medicare Listening Report
Last week AcademyHealth announced, “In response to what we heard from Medicare policymakers, AcademyHealth today released a series of Evidence Roadmaps...These Roadmaps represent a selected, minimal set of key resources rather than a comprehensive list of relevant research. As such, the Roadmaps are intended to help policy analysts and other research users better understand whether a perceived research gap represents an actual lack of evidence or failure of existing evidence to reach the policy arena, that is, a failure of adequate translation and dissemination.” Clickhere to view the article.
5. NEJM: Addressing the Challenge of Gray-Zone Medicine, Ethically Influencing Referrals in ACOs
(1/15, Amitabh Chandra, Ph.D., Dhruv Khullar, M.D., M.P.P., and Thomas H. Lee, M.D., The New England Journal of Medicine) comments “...One fundamental problem may be a misguided perspective that health care is a binary world in which interventions are either effective or ineffective, appropriate or inappropriate. In truth, there are large gray zones in which an intervention is neither clearly effective nor clearly ineffective — zones where benefits are unknown or uncertain and value may depend on patients' preferences and available alternatives. Much health care occurs in these gray zones, which are expanding despite insights gained from comparative effectiveness research.” Click here to view the article.
(1/15, Matthew DeCamp, M.D., Ph.D., and Lisa Soleymani Lehmann, M.D., Ph.D., The New England Journal of Medicine) comments “...ACOs could draw on patient-centered outcomes research to identify the outcomes most relevant to patients. For example, an ACO creating a preferred referral list for cardiovascular disease could incorporate such outcomes as validated measures of quality of life or symptoms in addition to cost or disease-specific metrics such as statin-prescribing rates.” Click here to view the article.
6. JAMA: Varieties of Standard-of-Care Treatment Randomized Trials: Ethical Implications
Last Thursday, researchers Scott Kim and Franklin Miller wrote in JAMA, “The task of abstracting principles that are specific enough to provide robust ethical guidance (about research risks or the scope of informed consent) and yet are broad enough to apply to standard-of-care treatment RCTs across the board will be a difficult, if not impossible, task. Investigators and ethics review committees should not draw broad ethical conclusions from the fact that studies are comparing standard treatments and instead consider the wide variability of ethically salient features even among standard-of-care RCTs.” Click here to view the article.
7. Kaiser Permanente: International Efforts to Improve Quality and Efficiency in Health Care
Murray N. Ross of Kaiser Permanente reported last week, “[A]n understanding of which technologies and interventions—drugs, devices, diagnostics, and health care services—increase the quality and value of health care and, second, knowledge of policy levers that could encourage health care systems to adopt such technologies. Comparative Effectiveness Research (CER) and Health Technology Assessment (HTA) are important tools used in different ways by countries to achieve these goals.” Click here to view the article.
8. PCORI in the News
For The Hill, Grayson Norquist comments, “PCORI's approach differs from traditional research because it does not stop at what works best for the ‘average’ patient. We ask whether treatment effectiveness varies depending on patient characteristics and preferences. It's a model that can advance personalized medicine by giving patients and those who care for them more personalized information about their options.” Click here to view the article.
Bridget B. Kelly and Derek Yach had their article picked up by The Huffington Post saying, “There is hope that the landscape is slowly changing. Initiatives such as the NIH Office of Disease Prevention's Strategic Plan for 2014-2018 and the Affordable Care Act's mandated Patient-Centered Outcomes Research Institute (PCORI) have the potential to strengthen prevention science and build the evidence-base for effective prevention interventions. Innovations in personalized health technologies and advances in behavioral economics also show great promise in improving health behaviors for chronic disease prevention.” Click here to view the article.
And most recently, Carrie Arnold of The Lancet reported, “Scientists studying a disease have a lot of questions that drive their work...Patients with these diseases, however, often have very different questions...Often, scientists don't think about asking these types of questions because they often haven't worked with patients to ask about their needs and concerns...[PCORI Director Joe Selby] says that the goal of PCORI is to change all that. ‘The name we were given caused us to rethink how we did research,’ Selby says. ‘We want to fund research that patients say is important to them.’” Click here to view the article.
9. PCORI Blog Posts: Review Panels, Obesity, Elderly Falls
Written by Tsahai Tafari, associate director of science and Kimberly Marschhauser, PhD, “With our August 2013 cycle of PCORI Funding Announcement (PFAs), we began to move toward using standing panels to evaluate applications...Now we find that we're becoming less dependent on the standing panels...As a result, we are phasing out the designation of standing panels. In doing so, we are fully confident that we will be able to maintain the pool of returning, experienced reviewers needed to ensure that our process is rigorous, consistent, and fair to applicants, as well as fulfilling for the reviewers.” Click here to view the blog.
Cathy Gurgol, science program officer, and Katie Lewis, science program associate, wrote in The PCORI Blog, “As a demonstration project to test-drive PCORnet, PCORI may this year fund one or two observational studies addressing aspects of obesity. Such studies compare data from groups receiving different types of care during their normal clinical experience, rather than interventions randomly assigned in an experiment.” Click here to view the blog.
And on Thursday, Steven Clauser, science program director, commented, “[T]he Fall Injuries Prevention Partnership, a recent joint effort by PCORI and the National Institute on Aging (NIA) of the National Institutes of Health, is sponsoring a study testing the effectiveness of a potential solution to this major public health issue. The study, called STRIDE (Strategies to Reduce Injuries and Develop Confidence in Elders), has made good progress in its first seven months.” Click here to view the blog.
10. Medical Journal Articles
Model For A Patient-Centered Comparative Effectiveness Research Center: Click here to view.
On Heterogeneity of Treatment Effects and Clinical Freedom: Click here to view.
Network Meta-Analysis for Evidence Synthesis: What Is it and Why Is it Posed to Dominate Cardiovascular Decision Making? Click here to view.
Evaluation of Ethical Aspects in Health Technology Assessment: More Methods than Applications? Click here to view.
Evidence-Based Pain Management and Palliative Care: Click here to view.
11. AHRQ Effective Program Updates
Nonpharmacological Versus Pharmacological Treatments for Adult Patients With Major Depressive Disorder: Click here to comment by February 11, 2015
Horizon Scan Status Update, November 2014 Report: Click here to view.
Imaging Tests for the Staging of Colorectal Cancer, Disposition of Comments Report: Click here to view.
Integration of Behavioral Health Into Primary Care: Click here to view.
It’s not too late to get the word out to your networks and colleagues! As a reminder, the PIPC webinar – an online event focusing on the importance of patient engagement in their own healthcare and in health policy - will be streamed on the PIPC website at 2:00 pm ET today, Tuesday. Simply click here to access it on your computer or mobile device. If you have not yet RSVP’d, please email jgolibart@thornrun.com to let her know that you plan to attend. Those that are unable to access the event on a computer or mobile device can also call in at:
US Toll Free: 1-888-490-6951 International: 1-630-424-7872 Meeting ID: 6883859#
Included in the agenda for the webinar:
We will highlight stories from two individual patients: Ms. Laura Roix, an idiopathic pulmonary fibrosis (IPF) patient (click here to view her story) and Ms. Letitia Brown-James, an epilepsy patient (click here to view her story).
PIPC’s Executive Director, Sara van Geertruyden, will discuss the components of a patient-centered health system, and the importance of empowered patients to drive policies that are responsive to their unique and individual health care needs.
Tony Coelho will moderate the discussion, providing his perspective based on decades of experience as an epilepsy patient, a Congressman, and a life-long patient-advocate.
2. PCORI Seeking Nominations to Advisory Panels by February 6
As a reminder, the Patient-Centered Outcomes Research Institute (PCORI) announced that it is accepting nominations for its Advisory Panels for terms beginning in 2015. We urge you to help PCORI identify great candidates!
Specifically, it is seeking nominations to fill:
•Up to four positions on the Assessment of Prevention Diagnosis, and Treatment Options panel;
•Up to five positions on the Improving Healthcare Systems panel;
•Up to six positions on the Addressing Disparities panel;
•Up to six positions on the Patient Engagement panel, including caregivers and patient organizations; and
•One position on the Rare Diseases panel.
The Panels are seeking patients (including patient representatives and caregivers), clinicians, researchers, industry representatives, and payers to advise PCORI on the issues listed above. Terms are three years except for on the Rare Diseases panel where they are one to two years. Panelists are expected to follow the PCORI's Conflict of Interest Policy and to attend two to four in-person meetings in Washington, D.C. and additional meetings remotely. Applications are due February 6, 2015. Click here to view the announcement.
3. Huffington Post: Top 10 Medical Research Issues and Trends to Watch in 2015
In the Huffington Post, Margaret Anderson commented, “Will 2015 be the year we all move beyond lip-service to "patient-centeredness" and start building the science around patient-reported outcomes, benefit-risk, and value and coverage - in partnership with patients rather than on their behalf?...The Patient-Centered Outcomes Research Institute and FDA's Center for Devices and Radiological Health are leading the way to incentivize patient-centered approaches to clinical effectiveness research and medical device design and regulation.” Click here to view the article.
4. AcademyHealth: "Evidence Roadmaps" Launched in Response to Medicare Listening Report
Last week AcademyHealth announced, “In response to what we heard from Medicare policymakers, AcademyHealth today released a series of Evidence Roadmaps...These Roadmaps represent a selected, minimal set of key resources rather than a comprehensive list of relevant research. As such, the Roadmaps are intended to help policy analysts and other research users better understand whether a perceived research gap represents an actual lack of evidence or failure of existing evidence to reach the policy arena, that is, a failure of adequate translation and dissemination.” Clickhere to view the article.
5. NEJM: Addressing the Challenge of Gray-Zone Medicine, Ethically Influencing Referrals in ACOs
(1/15, Amitabh Chandra, Ph.D., Dhruv Khullar, M.D., M.P.P., and Thomas H. Lee, M.D., The New England Journal of Medicine) comments “...One fundamental problem may be a misguided perspective that health care is a binary world in which interventions are either effective or ineffective, appropriate or inappropriate. In truth, there are large gray zones in which an intervention is neither clearly effective nor clearly ineffective — zones where benefits are unknown or uncertain and value may depend on patients' preferences and available alternatives. Much health care occurs in these gray zones, which are expanding despite insights gained from comparative effectiveness research.” Click here to view the article.
(1/15, Matthew DeCamp, M.D., Ph.D., and Lisa Soleymani Lehmann, M.D., Ph.D., The New England Journal of Medicine) comments “...ACOs could draw on patient-centered outcomes research to identify the outcomes most relevant to patients. For example, an ACO creating a preferred referral list for cardiovascular disease could incorporate such outcomes as validated measures of quality of life or symptoms in addition to cost or disease-specific metrics such as statin-prescribing rates.” Click here to view the article.
6. JAMA: Varieties of Standard-of-Care Treatment Randomized Trials: Ethical Implications
Last Thursday, researchers Scott Kim and Franklin Miller wrote in JAMA, “The task of abstracting principles that are specific enough to provide robust ethical guidance (about research risks or the scope of informed consent) and yet are broad enough to apply to standard-of-care treatment RCTs across the board will be a difficult, if not impossible, task. Investigators and ethics review committees should not draw broad ethical conclusions from the fact that studies are comparing standard treatments and instead consider the wide variability of ethically salient features even among standard-of-care RCTs.” Click here to view the article.
7. Kaiser Permanente: International Efforts to Improve Quality and Efficiency in Health Care
Murray N. Ross of Kaiser Permanente reported last week, “[A]n understanding of which technologies and interventions—drugs, devices, diagnostics, and health care services—increase the quality and value of health care and, second, knowledge of policy levers that could encourage health care systems to adopt such technologies. Comparative Effectiveness Research (CER) and Health Technology Assessment (HTA) are important tools used in different ways by countries to achieve these goals.” Click here to view the article.
8. PCORI in the News
For The Hill, Grayson Norquist comments, “PCORI's approach differs from traditional research because it does not stop at what works best for the ‘average’ patient. We ask whether treatment effectiveness varies depending on patient characteristics and preferences. It's a model that can advance personalized medicine by giving patients and those who care for them more personalized information about their options.” Click here to view the article.
Bridget B. Kelly and Derek Yach had their article picked up by The Huffington Post saying, “There is hope that the landscape is slowly changing. Initiatives such as the NIH Office of Disease Prevention's Strategic Plan for 2014-2018 and the Affordable Care Act's mandated Patient-Centered Outcomes Research Institute (PCORI) have the potential to strengthen prevention science and build the evidence-base for effective prevention interventions. Innovations in personalized health technologies and advances in behavioral economics also show great promise in improving health behaviors for chronic disease prevention.” Click here to view the article.
And most recently, Carrie Arnold of The Lancet reported, “Scientists studying a disease have a lot of questions that drive their work...Patients with these diseases, however, often have very different questions...Often, scientists don't think about asking these types of questions because they often haven't worked with patients to ask about their needs and concerns...[PCORI Director Joe Selby] says that the goal of PCORI is to change all that. ‘The name we were given caused us to rethink how we did research,’ Selby says. ‘We want to fund research that patients say is important to them.’” Click here to view the article.
9. PCORI Blog Posts: Review Panels, Obesity, Elderly Falls
Written by Tsahai Tafari, associate director of science and Kimberly Marschhauser, PhD, “With our August 2013 cycle of PCORI Funding Announcement (PFAs), we began to move toward using standing panels to evaluate applications...Now we find that we're becoming less dependent on the standing panels...As a result, we are phasing out the designation of standing panels. In doing so, we are fully confident that we will be able to maintain the pool of returning, experienced reviewers needed to ensure that our process is rigorous, consistent, and fair to applicants, as well as fulfilling for the reviewers.” Click here to view the blog.
Cathy Gurgol, science program officer, and Katie Lewis, science program associate, wrote in The PCORI Blog, “As a demonstration project to test-drive PCORnet, PCORI may this year fund one or two observational studies addressing aspects of obesity. Such studies compare data from groups receiving different types of care during their normal clinical experience, rather than interventions randomly assigned in an experiment.” Click here to view the blog.
And on Thursday, Steven Clauser, science program director, commented, “[T]he Fall Injuries Prevention Partnership, a recent joint effort by PCORI and the National Institute on Aging (NIA) of the National Institutes of Health, is sponsoring a study testing the effectiveness of a potential solution to this major public health issue. The study, called STRIDE (Strategies to Reduce Injuries and Develop Confidence in Elders), has made good progress in its first seven months.” Click here to view the blog.
10. Medical Journal Articles
Model For A Patient-Centered Comparative Effectiveness Research Center: Click here to view.
On Heterogeneity of Treatment Effects and Clinical Freedom: Click here to view.
Network Meta-Analysis for Evidence Synthesis: What Is it and Why Is it Posed to Dominate Cardiovascular Decision Making? Click here to view.
Evaluation of Ethical Aspects in Health Technology Assessment: More Methods than Applications? Click here to view.
Evidence-Based Pain Management and Palliative Care: Click here to view.
11. AHRQ Effective Program Updates
Nonpharmacological Versus Pharmacological Treatments for Adult Patients With Major Depressive Disorder: Click here to comment by February 11, 2015
Horizon Scan Status Update, November 2014 Report: Click here to view.
Imaging Tests for the Staging of Colorectal Cancer, Disposition of Comments Report: Click here to view.
Integration of Behavioral Health Into Primary Care: Click here to view.