In This Week’s Issue:
1. PIPC Comments on LAN's Updated APM Framework, click here to read the letter.
2. PIPC Patient Blog: Andrew Sperling, National Alliance on Mental Illness, click here to read the blog.
3. Oncology Leaders to Convene in D.C. for Turning the Tide Against Cancer 2017 National Conference, click here to register.
4. Ipsen: PIPC Participates in Dialogue for Patient Care, click here to view the report.
5. Lupus: Patient-Focused Drug Development Meeting, c
lick here to register!
6. Morning Consult: Reform Prescription Drug Labeling to Benefit Patients and Their Doctors, click here to read he op-ed.
7. Drug Topics: The Future of Oncology Treatment Is Value Assessment, click here to read the article.
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability Click here to apply.
9. Upcoming Events and Webinars, see details below
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. PIPC Comments on LAN's Updated APM Framework, click here to read the letter.
2. PIPC Patient Blog: Andrew Sperling, National Alliance on Mental Illness, click here to read the blog.
3. Oncology Leaders to Convene in D.C. for Turning the Tide Against Cancer 2017 National Conference, click here to register.
4. Ipsen: PIPC Participates in Dialogue for Patient Care, click here to view the report.
5. Lupus: Patient-Focused Drug Development Meeting, c
lick here to register!
6. Morning Consult: Reform Prescription Drug Labeling to Benefit Patients and Their Doctors, click here to read he op-ed.
7. Drug Topics: The Future of Oncology Treatment Is Value Assessment, click here to read the article.
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability Click here to apply.
9. Upcoming Events and Webinars, see details below
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. PIPC Comments on LAN's Updated APM Framework
In a letter to the Health Care Payment and Learning Action Network’s (LAN), PIPC applauds revisions made in the second draft of their Alternative Payment Model (APM) framework, while also raising concerns about the process and timeline to provide input. In the letter PIPC supports the fact that the new draft does not rely on cost effectiveness reports as a pillar for defining patient-centeredness in APMs. Additionally, PIPC strongly supports revisions made to move beyond damaging cost-effectiveness thresholds, and appreciates LAN's recognition of the importance of considering the risk of unintended consequences in APM design. Click here to read the letter.
2. PIPC Patient Blog: Andrew Sperling, National Alliance on Mental Illness
PIPC’s latest patient blog features Andrew Sperling from the National Alliance on Mental Illness. Mr Sperling provides his perspective on the importance of value frameworks in healthcare, and offers his concerns about ICER’s direction. “When organizations conducting value assessments initiate their work without engaging patients in the development of their fundamental research questions, we worry about its ultimate impact on affected patients. Without the perspective of patients at the table, the real-life benefits and risks of treatment that matter to patients cannot be identified and measured. Ultimately, if value is not measured from the patient’s perspective, patient access to important or necessary treatments could be impeded.”
“While we may worry that the design of ICER’s proposed review for [tardine dyskinesia] TD treatments will result in limited access to potentially promising therapies, we also know that organizations like PIPC, National Health Council, FasterCures, National Patient Advocate Foundation and others are working diligently on patient-centered value frameworks that are aligned with what matters to patients. Moving forward, we hope that ICER will follow PIPC’s lead to make value to the patient the top priority.” Click here to read the blog.
3. Oncology Leaders to Convene in D.C. for Turning the Tide Against Cancer 2017 National Conference
Leaders from across the oncology community will convene in Washington, D.C., on Thursday, June 29, 2017, for the Turning the Tide Against Cancer Through Sustained Medical Innovation 2017 National Conference, co-hosted by the Personalized Medicine Coalition, the American Association for Cancer Research, Feinstein Kean Healthcare, and CancerCare. The event will feature more than 30 speakers to explore the role of the patient across the continuum of cancer research and care, and delineate strategies for policymakers to consider that support meaningful patient engagement and deliver value to patients. Registration is free today, but space is limited. Click here to register today.
4. Ipsen: PIPC Participates in Dialogue for Patient Care
To hear their point of view, Ipsen CEO David Meek sat down with three patient advocates from the United States and Europe on March 13, 2017. Participants could discuss such critical issues as patient empowerment, patient-centered research, involving patients in the drug development process, access to innovative drugs and the role of real-world data. PIPC Chairman Sara van Geertruyden joined the discussion, stating, "Our goal is to have decision- makers look at the value of healthcare in a context that better reflects what patients want to achieve.” Click here to view the report.
5. Lupus: Patient-Focused Drug Development Meeting
On September 25, 2017, 10:00 am - 4:00 pm at the College Park Marriott Hotel & Conference Center, the FDA will hold a Patient-Focused Drug Development meeting to advance their understanding of the lupus patient perspective. The goal of the Lupus PFDD Meeting is to inform how FDA officials – particularly those reviewing potential new treatments for lupus – think about this disease. We want agency officials to know what it is like to live with lupus day-in and day-out, how the disease impacts your daily life, what benefits you expect in future treatments and what level of risk you may be willing to accept in exchange for these benefits.
Following the meeting, the organizers will write a report summarizing the survey results and the meeting, calling out the most important points and perspectives. This document will be conveyed to the FDA, pharmaceutical developers and researchers to ensure they know how lupus impacts people and families, what our community values most and what we want to see in new treatments. Click here to register!
6. Morning Consult: Reform Prescription Drug Labeling to Benefit Patients and Their Doctors
David Beier penned an op-ed in Morning Consult commenting on the need to reform prescription drug labeling“...The FDA often stands in the way of doctors and patients having the most relevant information because it has taken the narrow view that companies who sell drugs may only communicate data which are based on rigorous clinical trials. This discourages manufacturers from sharing equally-relevant information based on other types of investigations, such as real-world usage analyses and economic studies. The current FDA rules impede conversations between drug developers and insurance companies trying to establish mechanisms to pay for drugs according to their performance and value, rather than the volume sold.” Click here to read he op-ed.
7. Drug Topics: The Future of Oncology Treatment Is Value Assessment
Kathleen Gannon Longo touches on the emphasis of value assessment in oncology treatment in Drug Topics. “Value assessments are a new and evolving area, and have the potential to make a tremendous impact on patient treatment decisions, as well as on coverage and reimbursement decisions, according to a statement from the National Pharmaceutical Council...‘Many of the methodologies and thresholds used in the frameworks have not been tested or vetted, which not only causes uncertainty about the validity of the results but creates uncertainty about whether the frameworks are useful for their intended purpose. The evidence base for many of the frameworks is quite limited,’ said NPC in its statement.” Clickhere to read the article.
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability
The American Association on Health and Disability’s Frederick J. Krause Scholarship on Health and Disability is currently accepting applications. The scholarship honors Frederick J. Krause, a lifelong advocate for those with disabilities who passed away in 2014. Beginning with his role as a special education teacher, Mr. Krause’s distinguished career in advocacy included service in the federal government and the cofounding of the American Association on Health and Disability. The scholarship pays tribute to Mr. Krause by awarding scholarships to students with disabilities that are pursuing an education on disability-related topics. Click here to apply.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting
June 20, 2017
Click here for details.
Awardee Progress Reporting Webinar
June 21, 2017
Click here for details.
HHS Federal Partners Integrated Care Meeting
June 22-23, 2017
Click here for details.
PCORI at AcademyHealth's Annual Research Meeting 2017
June 25-27, 2017
Click here for details.
The Seventh National Bundled Payment Summit
June 26-28, 2017
Click here for details.
Eugene Washington PCORI Engagement Awards: Key Information and Updates
June 27, 2017
Click here for details.
Bonnie: An eCQM Testing Tool.
June 28, 2017
Click here for details.
PCORI and MHN Briefing on "What's the Right Decision for Me? Shared Decision Making in Prostate Cancer"
June 28, 2017
Click here for details.
Turning the Tide Against Cancer Through Sustained Medical Innovation 2017 National Conference
June 29, 2017
Click here for details.
PCORI Dissemination & Implementation Funding Opportunities Webinar
July 11, 2017
Click here for details.
Lupus Patient-Focused Drug Development (PFDD) Meeting
September 25, 2017
Click here for details.
Introduction to HEOR: Principles and Practice in Health Care Decision Making
October 5-8
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
10. Medical Journal Articles
Experiences in Adapting European Network for Health Technology Assessment Rapid Reviews to Inform Local Decision Making, click here to view.
Impact of a Value-Based Insurance Design for Physical Therapy to Treat Back Pain on Care Utilization and Cost, click here to view.
Visions of Stakeholders about Instutionalization of Health Technology Assessment in Chile: S Qualitative Study, click here to view.
Oncology Drugs for Orphan Indications: How Are HTA Processes Evolving for this Specific Drug Category, click here to view.
Delivery of Meaningful Cancer Care: A Retrospective Cohort Study Assessing Cost and Benefit with the ASCO and ESMO Frameworks, click here to view.
Harmonizing Health Technology Assessment Practices in University Hospitals: To What Extent Is the Mini-HTA Model Suitable in the French Context?, click here to view.
Developments in Value Frameworks to Inform the Allocation of Healthcare Resources, clickhere to view.
Real-World Effectiveness of Antipsychotic Treatments in a Nationwide Cohort of 29,823 Patients With Schizophrenia, click here to view.
Comparative Effectiveness of Oral Antiplatelet Agents in Patients with Acute Coronary Syndrome, click here to view.
The Value of Pragmatic and Observational Studies in Health Care and Public Health, click here to view.
From Evidence-Based Medicine to Personalized Medicine, with Particular Emphasis on Drug-Safety Monitoring, click here to view.
Impact of a Value-Based Insurance Design for Physical Therapy to Treat Back Pain on Care Utilization and Cost, click here to view.
Value-Based Insurance Design Pharmacy Benefits for Children and Youth With Special Health Care Needs: Principles and Opportunities, click here to view.
Refining Our Understanding of Value-Based Insurance Design and High Cost Sharing on Children, click here to view.
Optimization of Medication Use at Accountable Care Organizations, click here to view.
Effect of Bevacizumab vs Aflibercept on Visual Acuity Among Patients With Macular Edema Due to Central Retinal Vein Occlusion: The SCORE2 Randomized Clinical Trial, click here to view.
Why Patients Should Be Involved in Health Technology Assessment, click here to view.
Health Care Professionals' Attitudes Towards Evidence-based Medicine in the Workers' Compensation Setting: A Cohort Study, click here to view
Why Value Framework Assessments Arrive at Different Conclusions: A Multiple Myeloma Case Study, click here to view.
11. AHRQ Effective Program Updates
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, clickhere to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
Tympanostomy Tubes in Children with Otitis Media -- Final Report, click here to view
Treatment of Osteoarthritis of the Knee: An Update Review -- Final Report, click here to view.
Assessment Tools for Palliative Care -- Final Report, click here to view.
Noninvasive, Nonpharmacological Treatment for Chronic Pain, click here to view.
The Role of Immunotherapy in the Treatment of Asthma, click here to view
Preventing Complications and Treating Symptoms of Diabetic Peripheral Neuropathy -- Final Report, click here to view.
Systematic Review of Intermittent Inhaled Corticosteroids and of Long-acting Muscarinic Antagonists for Asthma, clickhere to view.
Interventions to Prevent Age-Related Cognitive Decline, Mild Cognitive Impairment, and Clinical Alzheimer's-Type Dementia -- Final Report, click here to view
First- and Second-Generation Antipsychotics in Children and Young Adults: Systematic Review Update -- Final Report, click here to view.
Strategies for Improving the Lives of Women Aged 40 and Above Living With HIV/AIDS -- Disposition of Comments, click here to view.
Physiologic Predictors of the Need for Trauma Center Care: A Systematic Review -- Research Protocol, click here to view.
In a letter to the Health Care Payment and Learning Action Network’s (LAN), PIPC applauds revisions made in the second draft of their Alternative Payment Model (APM) framework, while also raising concerns about the process and timeline to provide input. In the letter PIPC supports the fact that the new draft does not rely on cost effectiveness reports as a pillar for defining patient-centeredness in APMs. Additionally, PIPC strongly supports revisions made to move beyond damaging cost-effectiveness thresholds, and appreciates LAN's recognition of the importance of considering the risk of unintended consequences in APM design. Click here to read the letter.
2. PIPC Patient Blog: Andrew Sperling, National Alliance on Mental Illness
PIPC’s latest patient blog features Andrew Sperling from the National Alliance on Mental Illness. Mr Sperling provides his perspective on the importance of value frameworks in healthcare, and offers his concerns about ICER’s direction. “When organizations conducting value assessments initiate their work without engaging patients in the development of their fundamental research questions, we worry about its ultimate impact on affected patients. Without the perspective of patients at the table, the real-life benefits and risks of treatment that matter to patients cannot be identified and measured. Ultimately, if value is not measured from the patient’s perspective, patient access to important or necessary treatments could be impeded.”
“While we may worry that the design of ICER’s proposed review for [tardine dyskinesia] TD treatments will result in limited access to potentially promising therapies, we also know that organizations like PIPC, National Health Council, FasterCures, National Patient Advocate Foundation and others are working diligently on patient-centered value frameworks that are aligned with what matters to patients. Moving forward, we hope that ICER will follow PIPC’s lead to make value to the patient the top priority.” Click here to read the blog.
3. Oncology Leaders to Convene in D.C. for Turning the Tide Against Cancer 2017 National Conference
Leaders from across the oncology community will convene in Washington, D.C., on Thursday, June 29, 2017, for the Turning the Tide Against Cancer Through Sustained Medical Innovation 2017 National Conference, co-hosted by the Personalized Medicine Coalition, the American Association for Cancer Research, Feinstein Kean Healthcare, and CancerCare. The event will feature more than 30 speakers to explore the role of the patient across the continuum of cancer research and care, and delineate strategies for policymakers to consider that support meaningful patient engagement and deliver value to patients. Registration is free today, but space is limited. Click here to register today.
4. Ipsen: PIPC Participates in Dialogue for Patient Care
To hear their point of view, Ipsen CEO David Meek sat down with three patient advocates from the United States and Europe on March 13, 2017. Participants could discuss such critical issues as patient empowerment, patient-centered research, involving patients in the drug development process, access to innovative drugs and the role of real-world data. PIPC Chairman Sara van Geertruyden joined the discussion, stating, "Our goal is to have decision- makers look at the value of healthcare in a context that better reflects what patients want to achieve.” Click here to view the report.
5. Lupus: Patient-Focused Drug Development Meeting
On September 25, 2017, 10:00 am - 4:00 pm at the College Park Marriott Hotel & Conference Center, the FDA will hold a Patient-Focused Drug Development meeting to advance their understanding of the lupus patient perspective. The goal of the Lupus PFDD Meeting is to inform how FDA officials – particularly those reviewing potential new treatments for lupus – think about this disease. We want agency officials to know what it is like to live with lupus day-in and day-out, how the disease impacts your daily life, what benefits you expect in future treatments and what level of risk you may be willing to accept in exchange for these benefits.
Following the meeting, the organizers will write a report summarizing the survey results and the meeting, calling out the most important points and perspectives. This document will be conveyed to the FDA, pharmaceutical developers and researchers to ensure they know how lupus impacts people and families, what our community values most and what we want to see in new treatments. Click here to register!
6. Morning Consult: Reform Prescription Drug Labeling to Benefit Patients and Their Doctors
David Beier penned an op-ed in Morning Consult commenting on the need to reform prescription drug labeling“...The FDA often stands in the way of doctors and patients having the most relevant information because it has taken the narrow view that companies who sell drugs may only communicate data which are based on rigorous clinical trials. This discourages manufacturers from sharing equally-relevant information based on other types of investigations, such as real-world usage analyses and economic studies. The current FDA rules impede conversations between drug developers and insurance companies trying to establish mechanisms to pay for drugs according to their performance and value, rather than the volume sold.” Click here to read he op-ed.
7. Drug Topics: The Future of Oncology Treatment Is Value Assessment
Kathleen Gannon Longo touches on the emphasis of value assessment in oncology treatment in Drug Topics. “Value assessments are a new and evolving area, and have the potential to make a tremendous impact on patient treatment decisions, as well as on coverage and reimbursement decisions, according to a statement from the National Pharmaceutical Council...‘Many of the methodologies and thresholds used in the frameworks have not been tested or vetted, which not only causes uncertainty about the validity of the results but creates uncertainty about whether the frameworks are useful for their intended purpose. The evidence base for many of the frameworks is quite limited,’ said NPC in its statement.” Clickhere to read the article.
8. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability
The American Association on Health and Disability’s Frederick J. Krause Scholarship on Health and Disability is currently accepting applications. The scholarship honors Frederick J. Krause, a lifelong advocate for those with disabilities who passed away in 2014. Beginning with his role as a special education teacher, Mr. Krause’s distinguished career in advocacy included service in the federal government and the cofounding of the American Association on Health and Disability. The scholarship pays tribute to Mr. Krause by awarding scholarships to students with disabilities that are pursuing an education on disability-related topics. Click here to apply.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting
June 20, 2017
Click here for details.
Awardee Progress Reporting Webinar
June 21, 2017
Click here for details.
HHS Federal Partners Integrated Care Meeting
June 22-23, 2017
Click here for details.
PCORI at AcademyHealth's Annual Research Meeting 2017
June 25-27, 2017
Click here for details.
The Seventh National Bundled Payment Summit
June 26-28, 2017
Click here for details.
Eugene Washington PCORI Engagement Awards: Key Information and Updates
June 27, 2017
Click here for details.
Bonnie: An eCQM Testing Tool.
June 28, 2017
Click here for details.
PCORI and MHN Briefing on "What's the Right Decision for Me? Shared Decision Making in Prostate Cancer"
June 28, 2017
Click here for details.
Turning the Tide Against Cancer Through Sustained Medical Innovation 2017 National Conference
June 29, 2017
Click here for details.
PCORI Dissemination & Implementation Funding Opportunities Webinar
July 11, 2017
Click here for details.
Lupus Patient-Focused Drug Development (PFDD) Meeting
September 25, 2017
Click here for details.
Introduction to HEOR: Principles and Practice in Health Care Decision Making
October 5-8
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
10. Medical Journal Articles
Experiences in Adapting European Network for Health Technology Assessment Rapid Reviews to Inform Local Decision Making, click here to view.
Impact of a Value-Based Insurance Design for Physical Therapy to Treat Back Pain on Care Utilization and Cost, click here to view.
Visions of Stakeholders about Instutionalization of Health Technology Assessment in Chile: S Qualitative Study, click here to view.
Oncology Drugs for Orphan Indications: How Are HTA Processes Evolving for this Specific Drug Category, click here to view.
Delivery of Meaningful Cancer Care: A Retrospective Cohort Study Assessing Cost and Benefit with the ASCO and ESMO Frameworks, click here to view.
Harmonizing Health Technology Assessment Practices in University Hospitals: To What Extent Is the Mini-HTA Model Suitable in the French Context?, click here to view.
Developments in Value Frameworks to Inform the Allocation of Healthcare Resources, clickhere to view.
Real-World Effectiveness of Antipsychotic Treatments in a Nationwide Cohort of 29,823 Patients With Schizophrenia, click here to view.
Comparative Effectiveness of Oral Antiplatelet Agents in Patients with Acute Coronary Syndrome, click here to view.
The Value of Pragmatic and Observational Studies in Health Care and Public Health, click here to view.
From Evidence-Based Medicine to Personalized Medicine, with Particular Emphasis on Drug-Safety Monitoring, click here to view.
Impact of a Value-Based Insurance Design for Physical Therapy to Treat Back Pain on Care Utilization and Cost, click here to view.
Value-Based Insurance Design Pharmacy Benefits for Children and Youth With Special Health Care Needs: Principles and Opportunities, click here to view.
Refining Our Understanding of Value-Based Insurance Design and High Cost Sharing on Children, click here to view.
Optimization of Medication Use at Accountable Care Organizations, click here to view.
Effect of Bevacizumab vs Aflibercept on Visual Acuity Among Patients With Macular Edema Due to Central Retinal Vein Occlusion: The SCORE2 Randomized Clinical Trial, click here to view.
Why Patients Should Be Involved in Health Technology Assessment, click here to view.
Health Care Professionals' Attitudes Towards Evidence-based Medicine in the Workers' Compensation Setting: A Cohort Study, click here to view
Why Value Framework Assessments Arrive at Different Conclusions: A Multiple Myeloma Case Study, click here to view.
11. AHRQ Effective Program Updates
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, clickhere to view.
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view
Tympanostomy Tubes in Children with Otitis Media -- Final Report, click here to view
Treatment of Osteoarthritis of the Knee: An Update Review -- Final Report, click here to view.
Assessment Tools for Palliative Care -- Final Report, click here to view.
Noninvasive, Nonpharmacological Treatment for Chronic Pain, click here to view.
The Role of Immunotherapy in the Treatment of Asthma, click here to view
Preventing Complications and Treating Symptoms of Diabetic Peripheral Neuropathy -- Final Report, click here to view.
Systematic Review of Intermittent Inhaled Corticosteroids and of Long-acting Muscarinic Antagonists for Asthma, clickhere to view.
Interventions to Prevent Age-Related Cognitive Decline, Mild Cognitive Impairment, and Clinical Alzheimer's-Type Dementia -- Final Report, click here to view
First- and Second-Generation Antipsychotics in Children and Young Adults: Systematic Review Update -- Final Report, click here to view.
Strategies for Improving the Lives of Women Aged 40 and Above Living With HIV/AIDS -- Disposition of Comments, click here to view.
Physiologic Predictors of the Need for Trauma Center Care: A Systematic Review -- Research Protocol, click here to view.
