In This Week’s Issue:
1. PCORI Annual Meeting and Patient Networking Reception, click here to register.
2. Four Newspapers Publish Letter from Over 60 Leading Groups Calling for Voices of Patients and People at Center of Health Debate, click here to view the letter.
3. PIPC Launches New Website!, click here to view the site.
4. PCORI Blog: PCORI's Latest Milestones, click here to view the blog post.
5. Alliance for Aging Research and Bipartisan Policy Center Event: Maximizing the Value of Healthy Aging to Society, click here to register for the event.
6. Dermatology Times: Crowdsourcing Pinpoints Unmet Needs in Eczema Research, click here to view the article.
7. Video: Real World Evidence, click here to view the video.
8. Video: The Rise of Precision Medicine, click here to view the video.
9. Video: Francesco Chiappelli - The Theory and Practice of Comparative Effectiveness Research, click here to view the seminar.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
1. PCORI Annual Meeting and Patient Networking Reception, click here to register.
2. Four Newspapers Publish Letter from Over 60 Leading Groups Calling for Voices of Patients and People at Center of Health Debate, click here to view the letter.
3. PIPC Launches New Website!, click here to view the site.
4. PCORI Blog: PCORI's Latest Milestones, click here to view the blog post.
5. Alliance for Aging Research and Bipartisan Policy Center Event: Maximizing the Value of Healthy Aging to Society, click here to register for the event.
6. Dermatology Times: Crowdsourcing Pinpoints Unmet Needs in Eczema Research, click here to view the article.
7. Video: Real World Evidence, click here to view the video.
8. Video: The Rise of Precision Medicine, click here to view the video.
9. Video: Francesco Chiappelli - The Theory and Practice of Comparative Effectiveness Research, click here to view the seminar.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
1. PCORI Annual Meeting and Patient Networking Reception
The Patient-Centered Outcomes Research Institute (PCORI) is hosting its 2016 Annual Meeting entitled Changing the Conversation about Health Research on November 16-19 at the Gaylord National Resort and Convention Center in National Harbor, Maryland. They invite patients and caregivers to join more than 1,00 members of the healthcare community to hear updates on how scientists, patients, and other stakeholders are working together to make research more useful and relevant. Among those on Thursday’s panel (November 17) include PIPC Chairman Tony Coelho who will be speaking at 1:00pm and the National Alliance on Mental Illness’ (NAMI) Andrew Sperling, a PIPC member, who will be speaking on the 3:30 PCORI panel on how patient needs and values can be made central to health research and decision making. The deadline to register for the PCORI 2016 Annual Meeting is Thursday, October 27, 2016.
Click here for more information on PCORI’s Annual Meeting and to register for their event. PIPC is excited to be hosting a reception for participating patients during the annual meeting as well.
2. Four Newspapers Publish Letter from Over 60 Leading Groups Calling for Patients and People at Center of Health Debate
On Friday, October 7 PIPC joined over 60 groups representing patients and people served by health systems in signing onto an Open Letter that was published in several leading newspapers across the country, including the St. Louis Dispatch, the Cleveland Plain Dealer, the Detroit Free Press, and the Miami Herald. The letter called on the Presidential candidates and the Presidential debate moderators to give voice to patients and people served by health systems and to give them a voice in health care. Furthermore, it calls for the creation of a health care system that rewards the outcomes that matter to patients, and emphasizes that when it comes to dictating patients’ treatment options, no patient is "average."
“We want to know, how will you as candidates make sure we are at the center of health care? What are your plans for empowering consumers, patients and providers? What decisions should be made by the government vs. individuals?” the letter states. “We reject the notion that we should be bundled into one-size-fits-all care models, or valued against one-size-fits-all judgments of cost-effectiveness. Don’t tell us what we’re worth – ask us what we value.” Click here to view the open letter.
3. PIPC Launches New Website!
PIPC has launched a new website that highlights the Partnership’s work to give patients a seat at the table in the evolving healthcare landscape. The redesigned and revamped website aptly highlights PIPC's work to amplify the voices of patients and people with disabilities in three key areas in the discussion of value-based care: (1) implementing value-based payment, (2) developing and using tools to inform decisions on care value, and (3) supporting research on comparative value.
Among the key resources available on the new PIPC website (www.pipcpatients.org):
4. PCORI Blog: PCORI's Latest Milestones
In PCORI’s latest blog post, Dr. Joe V. Selby, M.D., M.P.H., Executive Director of the Office of the Executive Director Executive Team at PCORI provides an update on the agency’s latest achievements and growing influence. Dr. Selby highlights a number of PCORI’s successes including that the agency closed their fiscal year with a portfolio of nearly $1.6 billion in comparative-effectiveness research (CER) and related projects with a total of 551, and touted the progress being made by PCORnet in harnessing large-scale health data and stakeholder partnerships to boost the pace and power of health research at lower cost than was previously possible. Dr. Selby also explains that this past fiscal year, PCORI continued to focus more attention—and funding—on larger targeted studies of critical patient-centered research questions that their stakeholder community told the agency were important to them. The studies approved for funding included comparisons of drugs, medical procedures, and other approaches to disease prevention, diagnosis, and treatment, he says.
Dr. Selby notes, “We’re pleased to see growing evidence that our work is changing the conversation about how health research is conducted in the United States—and in the process, having an impact on the culture of research itself. Healthcare institutions, academic centers, funders, policy makers, and industry are increasingly seeking to engage patients and others in the healthcare community in their work.” He goes on to say, “We don’t claim to have started this movement but do think we can take some credit for its quickening pace and broadening impact. We share the belief that this approach makes it more likely that research will focus on the issues and outcomes most important to patients and other stakeholders, yielding results more relevant to those who need them and more likely to be taken up in practice.” Click here to view the blog post.
5. Alliance for Aging Research and Bipartisan Policy Center Event: Maximizing the Value of Healthy Aging to Society
Join the Bipartisan Policy Center (BPC) and the Alliance for Aging Research to explore the work of MetLife Foundation Silver Scholar Award® winner, David A. Wise, the John F. Stambaugh Professor of Political Economy, Emeritus at the Harvard Kennedy School, and to discuss the broader issues of assessing value in aging. This award, administered by the Alliance for Aging Research, honors the work of researchers whose scholarship increases our understanding of the value of healthy life after 65 and continued medical innovations that help people live longer in good health.
When:
Tuesday, October 25, 2016
10:00 a.m. - 11:00 a.m. ET
Where:
Bipartisan Policy Center
1225 Eye St. NW
Suite 1000
Washington, D.C. 20005
As our population ages with increasing chronic disease, the U.S. faces enormous and unprecedented stresses to its health care system and economy. While many Americans age 65 and older are no longer in the "traditional" workforce, they are increasingly seeking opportunities for civic engagement, exploring new careers, supporting families, and continuing to contribute to society. Education, wealth, and health all increase the opportunities for older Americans to make continued societal contributions post-retirement.
Speakers include: Dr. Carolyn Blanckmeister, Global Medical Lead for Wellness of Pfizer Consumer Healthcare, Dr. Richard Frank; Professor of Health Economics at Harvard Medical School, G. William Hoagland, Senior Vice President of BPC; and Dr. Anand Parekh, Chief Medical Advisor of BPC. Susan Peschin, President and Chief Executive Officer of Alliance for Aging Research will be moderating the panel. Click here to register for the event.
6. Dermatology Times: Crowdsourcing Pinpoints Unmet Needs in Eczema Research
In a recent article in the Dermatology Times, Korey Capozza, M.P.H. whose son has moderate-to-severe eczema discusses the need to conduct more patient-centered research in atopic dermatitis. “A lot of research is looking at the basic science: Questions around genetics or … microbiology questions related to skin,” Capozza says. “But some of the issues that parents are interested in are actually much more practical. Yes, we’ll never understand how to cure eczema without the more basic research, but there’s also this other need for practical research that’s relevant to patients.” Click here to view the article.
7. Video: Real World Evidence
In a recent video released by the Association of Clinical Research Organizations (ACRO), clinical research organization leaders and ACRO members discuss the rise and importance of Real World Evidence. The video touches upon how the interests of patients, providers, payers and researchers can be aligned. Click here to view the video.
8. Video: The Rise of Precision Medicine
ACRO has released a video in which clinical research organization leaders and ACRO members discuss the rise and importance of Precision Medicine. Notably, President and CEO of Bioclinica states “One way to look at Precision Medicine is that it is the right drug for the right patient at the right dose.” Click here to view the video.
9. Video: Francesco Chiappelli - The Theory and Practice of Comparative Effectiveness Research
In a video by Hunter Medical Research Institute (HMRI), internationally recognized expert in CER Professor Francesco Chiappelli holds a seminar to investigate how we can truly obtain the ‘best available’ evidence, how to obtain reliable assessments and analyses of it, how to best disseminate this information, and how we integrate this into evidence-based clinical decision making. Click here to view the seminar.
10. Upcoming Events and Webinars
PCORI: Advisory Panel on Addressing Disparities Fall 2016 Meeting
October 24, 2016, 9:00AM - 5:00PM ET
Click here for details.
LAN Fall Summit
October 25, 2016, 7:00 - 8:30AM ET
Click here for details.
Leveraging Patient and Stakeholder Engagement to Facilitate Study and Research Network Recruitment: Stories of Impact from PCORI Funded Projects
October 25, 2016, 12:00 - 1:00PM ET
Click here for details
ANCOR: Election 2016: Empowering the I/DD Community To Rock The Vote
October 25, 2016, 2:00PM - 3:00PM ET
Click here for details.
Breast Cancer Twitter Chat
October 25, 2016, 2:00 - 3:00PM ET
Click here for details.
Measuring Our Impact on Science, Delivery of Care, and Patient Outcomes
October 27 - 28, 2016
Click here for details.
2016 PCORI Annual Meeting
November 17 - 19, 2016, Gaylord National Resort & Convention Center, National Harbor, MD
Click here for details.
Cancer Support Community: Access to Care in Cancer 2016
November 30, 2016, 9:00AM – 12:00pm
Click here for details.
Recommendations of the Second Panel on Cost-Effectiveness in Health and Medicine
December 7, 2016, 9:00AM - 4:30PM
Click here for details.
11. Medical Journal Articles
Estimating Health-State Utility for Economic Models in Clinical Studies: An ISPOR Good Research Practices Task Force Report, click here to view.
When Future Change Matters: Modeling Future Price and Diffusion in Health Technology Assessments of Medical Devices, click here to view.
GRADE Evidence to Decision Frameworks for Adoption, Adaptation and De Novo Development of Trustworthy Recommendations: GRADE-ADOLOPMENT, click here to view.
Modeling Treatment Sequences in Pharmacoeconomic Models, click here to view.
Viewpoint: Cost, Effectiveness, and Value: How to Judge?, click here to view.
Comparative Effectiveness of Biologics for the Management of Rheumatoid Arthritis: Systematic Review and Network Meta-Analysis, click here to view.
Is Intravenous Lorazepam Really More Effective and Safe than Intravenous Diazepam as First-Line Treatment for Convulsive Status Epilepticus? A Systematic Review with Meta-Analysis of Randomized Controlled Trials, click here to view.
Baricitinib, Methotrexate, or Combination in Patients with Rheumatoid Arthritis and No or Limited Prior Disease-Modifying Antirheumatic Drug Treatment, click here to view.
12. AHRQ Effective Program Updates
The Effectiveness of Indoor Allergen Reduction and the Role of Bronchial Thermoplasty in the Management of Asthma -- Research Protocol, click here to view.
Omega-3 Fatty Acids and Maternal and Child Health: An Updated Systematic Review -- Final Report, click here to view.
The Patient-Centered Outcomes Research Institute (PCORI) is hosting its 2016 Annual Meeting entitled Changing the Conversation about Health Research on November 16-19 at the Gaylord National Resort and Convention Center in National Harbor, Maryland. They invite patients and caregivers to join more than 1,00 members of the healthcare community to hear updates on how scientists, patients, and other stakeholders are working together to make research more useful and relevant. Among those on Thursday’s panel (November 17) include PIPC Chairman Tony Coelho who will be speaking at 1:00pm and the National Alliance on Mental Illness’ (NAMI) Andrew Sperling, a PIPC member, who will be speaking on the 3:30 PCORI panel on how patient needs and values can be made central to health research and decision making. The deadline to register for the PCORI 2016 Annual Meeting is Thursday, October 27, 2016.
Click here for more information on PCORI’s Annual Meeting and to register for their event. PIPC is excited to be hosting a reception for participating patients during the annual meeting as well.
2. Four Newspapers Publish Letter from Over 60 Leading Groups Calling for Patients and People at Center of Health Debate
On Friday, October 7 PIPC joined over 60 groups representing patients and people served by health systems in signing onto an Open Letter that was published in several leading newspapers across the country, including the St. Louis Dispatch, the Cleveland Plain Dealer, the Detroit Free Press, and the Miami Herald. The letter called on the Presidential candidates and the Presidential debate moderators to give voice to patients and people served by health systems and to give them a voice in health care. Furthermore, it calls for the creation of a health care system that rewards the outcomes that matter to patients, and emphasizes that when it comes to dictating patients’ treatment options, no patient is "average."
“We want to know, how will you as candidates make sure we are at the center of health care? What are your plans for empowering consumers, patients and providers? What decisions should be made by the government vs. individuals?” the letter states. “We reject the notion that we should be bundled into one-size-fits-all care models, or valued against one-size-fits-all judgments of cost-effectiveness. Don’t tell us what we’re worth – ask us what we value.” Click here to view the open letter.
3. PIPC Launches New Website!
PIPC has launched a new website that highlights the Partnership’s work to give patients a seat at the table in the evolving healthcare landscape. The redesigned and revamped website aptly highlights PIPC's work to amplify the voices of patients and people with disabilities in three key areas in the discussion of value-based care: (1) implementing value-based payment, (2) developing and using tools to inform decisions on care value, and (3) supporting research on comparative value.
Among the key resources available on the new PIPC website (www.pipcpatients.org):
- An updated ‘Issues’ page which highlight’s PIPC’s previous work in the three key areas of focus;
- A new ‘Where We Stand’ page, which summarizes PIPC’s positive, forward-thinking agenda for how to include the voices of patients and people with disabilities at the center of the evolving healthcare landscape;
- An action-oriented call-to-action – the Patient Voices, Patient Value Initiative – which calls on patients and people with disabilities to engage with policymakers in the development of “value” policies;
- A revamped ‘Resources’ page – a sortable compendium including all of PIPC’s roundtable outputs, white papers, letters and comments, and polling data;
- The PIPC Blog, which includes everything from our ‘PIPC Patients Blog’ posts, the ‘Chairman’s Corner,’ recent news items, recent press releases, and all of our previous ‘PIPC Weekly Updates.’
4. PCORI Blog: PCORI's Latest Milestones
In PCORI’s latest blog post, Dr. Joe V. Selby, M.D., M.P.H., Executive Director of the Office of the Executive Director Executive Team at PCORI provides an update on the agency’s latest achievements and growing influence. Dr. Selby highlights a number of PCORI’s successes including that the agency closed their fiscal year with a portfolio of nearly $1.6 billion in comparative-effectiveness research (CER) and related projects with a total of 551, and touted the progress being made by PCORnet in harnessing large-scale health data and stakeholder partnerships to boost the pace and power of health research at lower cost than was previously possible. Dr. Selby also explains that this past fiscal year, PCORI continued to focus more attention—and funding—on larger targeted studies of critical patient-centered research questions that their stakeholder community told the agency were important to them. The studies approved for funding included comparisons of drugs, medical procedures, and other approaches to disease prevention, diagnosis, and treatment, he says.
Dr. Selby notes, “We’re pleased to see growing evidence that our work is changing the conversation about how health research is conducted in the United States—and in the process, having an impact on the culture of research itself. Healthcare institutions, academic centers, funders, policy makers, and industry are increasingly seeking to engage patients and others in the healthcare community in their work.” He goes on to say, “We don’t claim to have started this movement but do think we can take some credit for its quickening pace and broadening impact. We share the belief that this approach makes it more likely that research will focus on the issues and outcomes most important to patients and other stakeholders, yielding results more relevant to those who need them and more likely to be taken up in practice.” Click here to view the blog post.
5. Alliance for Aging Research and Bipartisan Policy Center Event: Maximizing the Value of Healthy Aging to Society
Join the Bipartisan Policy Center (BPC) and the Alliance for Aging Research to explore the work of MetLife Foundation Silver Scholar Award® winner, David A. Wise, the John F. Stambaugh Professor of Political Economy, Emeritus at the Harvard Kennedy School, and to discuss the broader issues of assessing value in aging. This award, administered by the Alliance for Aging Research, honors the work of researchers whose scholarship increases our understanding of the value of healthy life after 65 and continued medical innovations that help people live longer in good health.
When:
Tuesday, October 25, 2016
10:00 a.m. - 11:00 a.m. ET
Where:
Bipartisan Policy Center
1225 Eye St. NW
Suite 1000
Washington, D.C. 20005
As our population ages with increasing chronic disease, the U.S. faces enormous and unprecedented stresses to its health care system and economy. While many Americans age 65 and older are no longer in the "traditional" workforce, they are increasingly seeking opportunities for civic engagement, exploring new careers, supporting families, and continuing to contribute to society. Education, wealth, and health all increase the opportunities for older Americans to make continued societal contributions post-retirement.
Speakers include: Dr. Carolyn Blanckmeister, Global Medical Lead for Wellness of Pfizer Consumer Healthcare, Dr. Richard Frank; Professor of Health Economics at Harvard Medical School, G. William Hoagland, Senior Vice President of BPC; and Dr. Anand Parekh, Chief Medical Advisor of BPC. Susan Peschin, President and Chief Executive Officer of Alliance for Aging Research will be moderating the panel. Click here to register for the event.
6. Dermatology Times: Crowdsourcing Pinpoints Unmet Needs in Eczema Research
In a recent article in the Dermatology Times, Korey Capozza, M.P.H. whose son has moderate-to-severe eczema discusses the need to conduct more patient-centered research in atopic dermatitis. “A lot of research is looking at the basic science: Questions around genetics or … microbiology questions related to skin,” Capozza says. “But some of the issues that parents are interested in are actually much more practical. Yes, we’ll never understand how to cure eczema without the more basic research, but there’s also this other need for practical research that’s relevant to patients.” Click here to view the article.
7. Video: Real World Evidence
In a recent video released by the Association of Clinical Research Organizations (ACRO), clinical research organization leaders and ACRO members discuss the rise and importance of Real World Evidence. The video touches upon how the interests of patients, providers, payers and researchers can be aligned. Click here to view the video.
8. Video: The Rise of Precision Medicine
ACRO has released a video in which clinical research organization leaders and ACRO members discuss the rise and importance of Precision Medicine. Notably, President and CEO of Bioclinica states “One way to look at Precision Medicine is that it is the right drug for the right patient at the right dose.” Click here to view the video.
9. Video: Francesco Chiappelli - The Theory and Practice of Comparative Effectiveness Research
In a video by Hunter Medical Research Institute (HMRI), internationally recognized expert in CER Professor Francesco Chiappelli holds a seminar to investigate how we can truly obtain the ‘best available’ evidence, how to obtain reliable assessments and analyses of it, how to best disseminate this information, and how we integrate this into evidence-based clinical decision making. Click here to view the seminar.
10. Upcoming Events and Webinars
PCORI: Advisory Panel on Addressing Disparities Fall 2016 Meeting
October 24, 2016, 9:00AM - 5:00PM ET
Click here for details.
LAN Fall Summit
October 25, 2016, 7:00 - 8:30AM ET
Click here for details.
Leveraging Patient and Stakeholder Engagement to Facilitate Study and Research Network Recruitment: Stories of Impact from PCORI Funded Projects
October 25, 2016, 12:00 - 1:00PM ET
Click here for details
ANCOR: Election 2016: Empowering the I/DD Community To Rock The Vote
October 25, 2016, 2:00PM - 3:00PM ET
Click here for details.
Breast Cancer Twitter Chat
October 25, 2016, 2:00 - 3:00PM ET
Click here for details.
Measuring Our Impact on Science, Delivery of Care, and Patient Outcomes
October 27 - 28, 2016
Click here for details.
2016 PCORI Annual Meeting
November 17 - 19, 2016, Gaylord National Resort & Convention Center, National Harbor, MD
Click here for details.
Cancer Support Community: Access to Care in Cancer 2016
November 30, 2016, 9:00AM – 12:00pm
Click here for details.
Recommendations of the Second Panel on Cost-Effectiveness in Health and Medicine
December 7, 2016, 9:00AM - 4:30PM
Click here for details.
11. Medical Journal Articles
Estimating Health-State Utility for Economic Models in Clinical Studies: An ISPOR Good Research Practices Task Force Report, click here to view.
When Future Change Matters: Modeling Future Price and Diffusion in Health Technology Assessments of Medical Devices, click here to view.
GRADE Evidence to Decision Frameworks for Adoption, Adaptation and De Novo Development of Trustworthy Recommendations: GRADE-ADOLOPMENT, click here to view.
Modeling Treatment Sequences in Pharmacoeconomic Models, click here to view.
Viewpoint: Cost, Effectiveness, and Value: How to Judge?, click here to view.
Comparative Effectiveness of Biologics for the Management of Rheumatoid Arthritis: Systematic Review and Network Meta-Analysis, click here to view.
Is Intravenous Lorazepam Really More Effective and Safe than Intravenous Diazepam as First-Line Treatment for Convulsive Status Epilepticus? A Systematic Review with Meta-Analysis of Randomized Controlled Trials, click here to view.
Baricitinib, Methotrexate, or Combination in Patients with Rheumatoid Arthritis and No or Limited Prior Disease-Modifying Antirheumatic Drug Treatment, click here to view.
12. AHRQ Effective Program Updates
The Effectiveness of Indoor Allergen Reduction and the Role of Bronchial Thermoplasty in the Management of Asthma -- Research Protocol, click here to view.
Omega-3 Fatty Acids and Maternal and Child Health: An Updated Systematic Review -- Final Report, click here to view.
