In This Week’s Issue:
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy, click here to read the blog.
2. PCORI Video: Bringing Researchers and Patients Together to Improve Outcomes, click here to watch the video.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support,click here to submit.
4. HomeCare: The New Challenge of the Home-Based Care Industry, click here to read the article.
5. NPC: A Precision Paradigm for Value Assessment: How Frameworks Can Account for Personalized Medicine to Inform Payers, Providers, Innovators and Patients, click here to read the blog.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus, click here to submit.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy, click here to read the blog.
2. PCORI Video: Bringing Researchers and Patients Together to Improve Outcomes, click here to watch the video.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support,click here to submit.
4. HomeCare: The New Challenge of the Home-Based Care Industry, click here to read the article.
5. NPC: A Precision Paradigm for Value Assessment: How Frameworks Can Account for Personalized Medicine to Inform Payers, Providers, Innovators and Patients, click here to read the blog.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus, click here to submit.
7. Upcoming Events and Webinars, see details below.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy
In a new PIPC Patient blog, Janni Lehrer-Stein writes about the importance of the first gene therapy for inherited diseases. She notes that in order to reach patients and change lives for the better, the government, industry, patients and consumers must work together to develop a new framework for covering this kind of drug therapy. “Alternative payment models such as outcomes-based rebate models are aligned with a pay-for-performance approach, requiring the manufacturer to stand behind the efficacy and durability of the treatment — in this case, a one-dose treatment. And by embracing the principles of paying for ‘value,' both public and private payers are laying the necessary foundation for patient access in a world of 21st century cures.”
“The health science industry is making great strides toward developing cures for once incurable diseases. That includes preventions and cures for inherited retinal diseases that for me and millions of people like me, robbed us of our sight. An organization I’m proud to be a part of, the Foundation Fighting Blindness, has helped drive such research in the inherited blindness space. But any new treatment is only as good as a patient’s access to it.” Click here to read the blog.
2. PCORI Video: Bringing Researchers and Patients Together to Improve Outcomes
Dr. Matt Brennan and Susan Strong explain what they learned from collaborating on a research study for the first time. “The focus of PCORI to bring patients and caregivers into this mix is absolutely the right one. It educates us as researchers; it educated me as a person and as a physician, and I’m deeply indebted to our patients and caregivers who were a part of this project.” Click here to watch the video.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support
AcademyHealth’s eGEMS, the Journal for Electronic Health Data and Methods, is accepting manuscripts that highlight research in patient-centered clinical decision support to address emerging issues within health systems, advance health care quality and improve outcomes and health equity. “A new eGEMS special section, announced recently in an Academy Health blog post, will highlight novel approaches and thinking in this area. AHRQ supports eGEMS, the Patient-Centered Clinical Decision Support Learning Network and other initiatives that advance the science of how patients and providers can make decisions together using the best available evidence. There is no fee to submit an eGEMS manuscript and the deadline is January 31.” Click here to submit.
4. HomeCare: The New Challenge of the Home-Based Care Industry
Tracy Moorhead comments on the growing preference of home health care among seniors in HomeCare. “Home health plays an important role in health promotion and management. The Medicare Payment Advisory Committee (MedPAC) in 2017 noted that 60 percent of Medicare home health episodes were not preceded by an acute episode or hospitalization. This means agencies are increasingly supporting chronic care management and health promotion and prevention programs in efforts to prevent exacerbation of conditions that may lead to emergency department visits or hospitalizations. Why then, is homecare not recognized, engaged and reimbursed as a central component of high quality, lower cost, patient-centered health care models?” Click here to read the article.
5. NPC: A Precision Paradigm for Value Assessment: How Frameworks Can Account for Personalized Medicine to Inform Payers, Providers, Innovators and Patients
NPC’s Dr. Daryl Pritchard discusses the Personalized Medicine Coalition’s most recent white paper, stressing that value assessment frameworks must incorporate the principles of personalized medicine. “...As [value assessment frameworks] have gained prominence and become a focus of discussion by decision-makers within the health care community, it has become more important than ever to realize that patient-level efficiencies convey real value at the health system level. Currently, the value assessment viewpoints of payers and providers are often not aligned with those of patients. Following the recommendations in PMC's report will help bridge that gap.” Click here to read the blog.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus
The House Democratic Whip’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Click here to submit, and we urge you to share the information with PIPC as well at [email protected]!
7. Upcoming Events and Webinars
PCORI Board of Governors Meeting
January 23, 2018
Click here for details.
Pragmatic Clinical Studies Applicant Town Hall - Cycle 1 2018
January 29, 2018
Click here for details.
Improving Methods PFA Applicant Town Hall - Cycle 1 2018
January 30, 2018
Click here for details.
Precision Medicine: Expanding Opportunities
January 31, 2018
Click here for details.
Broad PFAs Applicant Town Hall - Cycle 1 2018
February 1, 2018
Click here for details.
Health Affairs and NPC Forum on Health Spending: Tackling The Big Issues
February 1, 2018
Click here for details.
NPC @ 2018 AcademyHealth National Health Policy Conference
February 5 - 6, 2018
Click here for details.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates
February 15, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
8. Medical Journal Articles
January Issue: Journal of Comparative Effectiveness Research, click here to view.
Toward Patient-Centered Outcomes for Cognitive Evaluations: The Perspective of Those Affected by Parkinson's Disease, click here to view.
Viewpoint: Funding Innovation in a Learning Health Care System, click here to view.
Including the Patient Voice in Patient-Centered Outcomes Research in Integrative Oncology, click here to view.
Patient and Provider Perspectives on Shared Decision Making: A Systematic Review of the Peer-Reviewed Literature, click here to view.
Gene Therapy: Evidence, Value and Affordability in the US Health Care System, click here to view.
Patient Value: Perspectives from the Advocacy Community, click here to view.
The Added Value of Integrate-HTA Guidance in the Work Processes of Health Technology Assessment Agencies, click here to view.
Practicalities Of Using Real-World Evidence (RWE) In Comparative Effectiveness Research (CER): Learnings From Imi-Getreal, click here to view.
The Role of Condition-Specific Preference-Based Measures in Health Technology Assessment, click here to view.
Hospital Cost Impact of Orbital Atherectomy with Angioplasty for Critical Limb Ischemia Treatment: A Modeling Approach, click here to view.
Real-World Evidence: Useful in the Real World of US Payer Decision Making? How? When? And What Studies? Click here to view.
Targeted Identification of Adverse Events in Coronary Artery Disease Patients Based on Patient-Reported Outcomes, click here to view.
9. AHRQ Effective Program Updates
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
Stroke Prevention in Atrial Fibrillation Patients: A Systematic Review Update, click here to view.
Venous Thromboembolism Prophylaxis in Major Orthopedic Surgery: Systematic Review Update, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update -- Research Protocol, click here to view.
Drug Therapy for Early Rheumatoid Arthritis in Adults – An Update -- Research Protocol, click here to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
In a new PIPC Patient blog, Janni Lehrer-Stein writes about the importance of the first gene therapy for inherited diseases. She notes that in order to reach patients and change lives for the better, the government, industry, patients and consumers must work together to develop a new framework for covering this kind of drug therapy. “Alternative payment models such as outcomes-based rebate models are aligned with a pay-for-performance approach, requiring the manufacturer to stand behind the efficacy and durability of the treatment — in this case, a one-dose treatment. And by embracing the principles of paying for ‘value,' both public and private payers are laying the necessary foundation for patient access in a world of 21st century cures.”
“The health science industry is making great strides toward developing cures for once incurable diseases. That includes preventions and cures for inherited retinal diseases that for me and millions of people like me, robbed us of our sight. An organization I’m proud to be a part of, the Foundation Fighting Blindness, has helped drive such research in the inherited blindness space. But any new treatment is only as good as a patient’s access to it.” Click here to read the blog.
2. PCORI Video: Bringing Researchers and Patients Together to Improve Outcomes
Dr. Matt Brennan and Susan Strong explain what they learned from collaborating on a research study for the first time. “The focus of PCORI to bring patients and caregivers into this mix is absolutely the right one. It educates us as researchers; it educated me as a person and as a physician, and I’m deeply indebted to our patients and caregivers who were a part of this project.” Click here to watch the video.
3. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support
AcademyHealth’s eGEMS, the Journal for Electronic Health Data and Methods, is accepting manuscripts that highlight research in patient-centered clinical decision support to address emerging issues within health systems, advance health care quality and improve outcomes and health equity. “A new eGEMS special section, announced recently in an Academy Health blog post, will highlight novel approaches and thinking in this area. AHRQ supports eGEMS, the Patient-Centered Clinical Decision Support Learning Network and other initiatives that advance the science of how patients and providers can make decisions together using the best available evidence. There is no fee to submit an eGEMS manuscript and the deadline is January 31.” Click here to submit.
4. HomeCare: The New Challenge of the Home-Based Care Industry
Tracy Moorhead comments on the growing preference of home health care among seniors in HomeCare. “Home health plays an important role in health promotion and management. The Medicare Payment Advisory Committee (MedPAC) in 2017 noted that 60 percent of Medicare home health episodes were not preceded by an acute episode or hospitalization. This means agencies are increasingly supporting chronic care management and health promotion and prevention programs in efforts to prevent exacerbation of conditions that may lead to emergency department visits or hospitalizations. Why then, is homecare not recognized, engaged and reimbursed as a central component of high quality, lower cost, patient-centered health care models?” Click here to read the article.
5. NPC: A Precision Paradigm for Value Assessment: How Frameworks Can Account for Personalized Medicine to Inform Payers, Providers, Innovators and Patients
NPC’s Dr. Daryl Pritchard discusses the Personalized Medicine Coalition’s most recent white paper, stressing that value assessment frameworks must incorporate the principles of personalized medicine. “...As [value assessment frameworks] have gained prominence and become a focus of discussion by decision-makers within the health care community, it has become more important than ever to realize that patient-level efficiencies convey real value at the health system level. Currently, the value assessment viewpoints of payers and providers are often not aligned with those of patients. Following the recommendations in PMC's report will help bridge that gap.” Click here to read the blog.
6. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus
The House Democratic Whip’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Click here to submit, and we urge you to share the information with PIPC as well at [email protected]!
7. Upcoming Events and Webinars
PCORI Board of Governors Meeting
January 23, 2018
Click here for details.
Pragmatic Clinical Studies Applicant Town Hall - Cycle 1 2018
January 29, 2018
Click here for details.
Improving Methods PFA Applicant Town Hall - Cycle 1 2018
January 30, 2018
Click here for details.
Precision Medicine: Expanding Opportunities
January 31, 2018
Click here for details.
Broad PFAs Applicant Town Hall - Cycle 1 2018
February 1, 2018
Click here for details.
Health Affairs and NPC Forum on Health Spending: Tackling The Big Issues
February 1, 2018
Click here for details.
NPC @ 2018 AcademyHealth National Health Policy Conference
February 5 - 6, 2018
Click here for details.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates
February 15, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
8. Medical Journal Articles
January Issue: Journal of Comparative Effectiveness Research, click here to view.
Toward Patient-Centered Outcomes for Cognitive Evaluations: The Perspective of Those Affected by Parkinson's Disease, click here to view.
Viewpoint: Funding Innovation in a Learning Health Care System, click here to view.
Including the Patient Voice in Patient-Centered Outcomes Research in Integrative Oncology, click here to view.
Patient and Provider Perspectives on Shared Decision Making: A Systematic Review of the Peer-Reviewed Literature, click here to view.
Gene Therapy: Evidence, Value and Affordability in the US Health Care System, click here to view.
Patient Value: Perspectives from the Advocacy Community, click here to view.
The Added Value of Integrate-HTA Guidance in the Work Processes of Health Technology Assessment Agencies, click here to view.
Practicalities Of Using Real-World Evidence (RWE) In Comparative Effectiveness Research (CER): Learnings From Imi-Getreal, click here to view.
The Role of Condition-Specific Preference-Based Measures in Health Technology Assessment, click here to view.
Hospital Cost Impact of Orbital Atherectomy with Angioplasty for Critical Limb Ischemia Treatment: A Modeling Approach, click here to view.
Real-World Evidence: Useful in the Real World of US Payer Decision Making? How? When? And What Studies? Click here to view.
Targeted Identification of Adverse Events in Coronary Artery Disease Patients Based on Patient-Reported Outcomes, click here to view.
9. AHRQ Effective Program Updates
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
Stroke Prevention in Atrial Fibrillation Patients: A Systematic Review Update, click here to view.
Venous Thromboembolism Prophylaxis in Major Orthopedic Surgery: Systematic Review Update, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update -- Research Protocol, click here to view.
Drug Therapy for Early Rheumatoid Arthritis in Adults – An Update -- Research Protocol, click here to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
