In This Week’s Issue:
1. PIPC and Other Organizations Provide Comments to ICER on Value Framework,mclick here to view.
2. PIPC Welcomes the Association of University Centers on Disabilities to its Steering Committee, see details below.
3. PIPC Patient Blog: Abigail Lore, click here to view the blog post.
4. My Brother Patrick’s Dying Wish, Click here to read the op-ed.
5. National Brain Tumor Society Launches Brain-Tumor Clinical Trial Finder, Click here to read the article.
6. Focus on value: A prescription for pharma, Click here to view the article.
7. PCORI Blog: PCORI Projects Put Findings into Action, Click here to view the blog post.
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 and Other Organizations Provide Comments to ICER on Value Framework,mclick here to view.
2. PIPC Welcomes the Association of University Centers on Disabilities to its Steering Committee, see details below.
3. PIPC Patient Blog: Abigail Lore, click here to view the blog post.
4. My Brother Patrick’s Dying Wish, Click here to read the op-ed.
5. National Brain Tumor Society Launches Brain-Tumor Clinical Trial Finder, Click here to read the article.
6. Focus on value: A prescription for pharma, Click here to view the article.
7. PCORI Blog: PCORI Projects Put Findings into Action, Click here to view the blog post.
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 and Other Organizations Provide Comments to ICER on Value Frameworks
PIPC Chairman Tony Coelho joined 38 patient groups in sending a letter to the Institute for Clinical and Economic Review (ICER) providing feedback on the proposed revisions to ICER’s value framework. In the letter, Chairman Coelho offers numerous suggestions urging ICER to formalize its patient engagement process within ICER’s value framework, with the focus of these suggestions centering around providing patient-centered reforms. As Chairman Coelho states, “Patients and their advocates will be the first to say that value is critical – improving health outcomes and making care efficient is a priority for our communities as well. We agree with ICER that stakeholders at all levels of health care require frameworks and tools to support their decision-making and achieve value, including payers. But regardless of the purpose of the framework or tool, or its intended audience, whether it’s payers, providers, or patients, it is crucial that the framework is patient-centered.” Click here to view the letter.
Additionally, comments were provided to ICER from other PIPC members, including the Cancer Support Community.
2. PIPC Welcomes the Association of University Centers on Disabilities to its Steering Committee
PIPC is thrilled to announce that the Association of University Centers on Disabilities (AUCD) has been added to the PIPC Steering Committee. Represented by Andy Imparato, AUCD focuses on advancing policies and practices that improve the health, education, social, and economic well-being of all people with developmental and other disabilities, their families, and their communities by supporting members in research, education, health, and service activities that achieve its vision.
3. PIPC Patient Blog: Abigail Lore
In a post on the PIPC Blog, college student Abigail Lore discusses the challenges of balancing diabetes management with academics. “I had 14 years of diabetes management under my belt when I was a freshman political science student at American University. I prepared and thought about my transition to college for weeks. I had registered with my school’s Academic Support and Access Center for accommodations, scoped out the dining hall offerings, and had the nerve-wracking talk with my roommate about the Emergency Glucagon Pen. But no level of preparation can prepare you for the ups and downs of having diabetes in college.”
“…Every diabetes patient is different, but for me, the hardest part of being at American were my blood sugar management and remembering to give insulin at mealtimes while balancing being a ‘regular college student.’ But more than that, what seemed next to impossible was figuring out the logistics of managing my diabetes supplies. This meant calculating when I had to reorder supplies, how long it would take to be shipped, and how long it would take to process through my university's package system – not to mention any appeals of prior authorizations I would have to facilitate over and over despite years of demonstrating the medical necessity of the supplies that work for me. It’s like having a double major, one in political science and one in diabetes supplies management.”
“…It is easy to feel defeated when you are surrounded by students performing at the best of their abilities. That’s especially true when you know if could just get access to your trusted insulin pump to spend more time in range, you too could feel that good, get those good grades, and land that prestigious internship. That is why comprehensive coverage for the diabetes equipment and supplies that work for each individual patient is vital, especially to college students.” Click here to view the blog post.
4. My Brother Patrick’s Dying Wish
Lisa Skemp offers some thoughts in a Next Avenue op-ed on her late brother Patrick’s family and health care providers in his final weeks. “Over the last two months, he was in three hospitals: a community hospital, a long-term acute care hospital and, lastly, a university hospital. Each organization had an interdisciplinary team of nurses, physicians, respiratory therapists, physical therapists, dietitians and ancillary staff with the goal of helping him “get better” and “get home” to his family as quickly as possible. He just wished (his health care workers) would listen to and believe him without him having to ‘prove’ his self-care awareness.” Click here to read the op-ed.
5. National Brain Tumor Society Launches Brain-Tumor Clinical Trial Finder
OncologyNurseAdvisor has the scoop on The National Brain Tumor Society’s (NBTS) launch of a new brain-tumor clinical trial finder to engage patients in new research and ease the process of finding clinical trials. From NBTS Clinical Trial Finder creator Michael Wenger: “I believe that greater awareness of available clinical trials can empower individual patients, as well as the entire brain tumor community, to get more involved in medical research and their own treatment planning.” Click here to read the article.
6. Focus on value: A prescription for pharma
John Glasspool and Thomas Bertels argue in a PMLiVE piece that the drug pricing debate demands a common understanding of value. “...Increasingly, payers, policymakers and providers are looking beyond the clinical data and asking for real-world evidence (RWE). Clinical development plans (CDP) need to evolve from delivering the data required for filing for approval and negotiating for reimbursement towards considering how to generate RWE that will support the value proposition beyond product launch for the entire product life cycle and towards a holistic understanding of how the treatment will impact the patient and caregiver experience.” Click here to view the article.
7. PCORI Blog: PCORI Projects Put Findings into Action
In a PCORI Blog post, Joanna Siegel, SM, ScD and Christopher Gayer, PhD touch on a new awards program within PCORI for researchers who want to take the next step in having their results influence care. “...As part of our efforts to ensure uptake of useful results in clinical practice, we have launched an awards program to enable teams that have completed a PCORI-funded research project to take the next step toward having their results influence care. These awards, which fund dissemination and implementation activities, help close the gap between research findings and use of that evidence in practice.” Click here to view the blog post.
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
Oncology Care Model Stakeholder Feedback Opportunity
May 11, 2017 Public Forum
Click here for details.
Getting to Know PCORI: From Application to Closeout
April 10 - 11, 2017
Click here for details.
CMS Measures under Consideration (MUC) 2017 Program Measurement Needs and Priorities
April 11, 2017
Click here for details.
Triangle Comparative Effectiveness Research Symposium
April 11, 2017
Click here for details.
Measure Authoring Tool (MAT) (eCQM Series)
April 12, 2017
Click here for details.
Cycle 1 2017 Improving Methods Applicant Town Hall
April 18, 2017
Click here for details.
Evaluating Patient Treatment Options: How Do We Know What Works Best?
April 18, 2017
Click here for details.
PCORI Funding Opportunities and Resources for Rare Disease Organizations
April 20, 2017
Click here for details.
Advisory Panel on Communication and Dissemination Research Spring 2017 Meeting
April 21, 2017
Click here for details.
PCORI Online Progress Report Webinar
April 24, 2017
Click here for details.
PCORI Board of Governors Meeting
April 25, 2017
Click here for details.
Advisory Panel on Rare Disease Spring 2017 Meeting
April 26, 2017
Click here for details.
PCORI Peer Review Webinar for Awardees
May 4, 2017
Click here for details.
OCM Stakeholder Public Forum
May 11, 2017
Click here for details.
Integrating PROs in EHRs: Presentation of a Users' Guide and Discussion of Standardization
May 25-26, 2017
Click here for details.
ICER Orphan Drug Assessment and Pricing Summit
May 31, 2017
Click here for details.
10. Medical Journal Articles
Comparative Effectiveness of Cefazolin versus Nafcillin or Oxacillin for Treatment of Methicillin-Susceptible Staphylococcus aureus Infections Complicated by Bacteremia: A Nationwide Cohort Study, click here to view.
Glucagon-like peptide-1 receptor agonists: a systematic review of comparative effectiveness research, click here to view.
Bridging the divide: building infrastructure to support community-academic partnerships and improve capacity to conduct patient-centered outcomes research, click here to view.
Reducing Barriers to Medication Access and Adherence for ACA and Medicaid Participants: A Peer-to-Peer, Community-Based Approach, click here to view.
Impact of a Value-Based Formulary in Three Chronic Disease Cohorts, click here to view.
Association Between Choice of Radical Prostatectomy, External Beam Radiotherapy, Brachytherapy, or Active Surveillance and Patient-Reported Quality of Life Among Men With Localized Prostate Cancer, click here to view.
Big Data: Will It Improve Patient-Centered Care?, click here to view.
A Review of HIV-Specific Patient-Reported Outcome Measures, click here to view.
Impact of Measuring Patient-Reported Outcomes in Dermatology Drug Development, click here to view.
Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research, click here to view.
A Patient and Provider Research Agenda on Diabetes and Hypertension Management, click here to view.
Comparative effectiveness of dual-action versus single-action antidepressants for the treatment of depression in people living with HIV/AIDS, click here to view
Patient-Reported Outcomes Following Treatment for Localized Prostate Cancer: Helping Decision Making for Patients and Their Physicians, click here to view
Vital Directions for Health and Health Care: Priorities From a National Academy of Medicine Initiative, click here to view
Translating Comparative Effectiveness Research Into Practice: Effects of Interventions on Lifestyle, Medication Adherence, and Self-Care for Type 2 Diabetes, Hypertension, and Obesity Among Black, Hispanic, and Asian Residents of Chicago and Houston, 2010 to 2013, click here to view.
Maintaining Primacy of the Patient Perspective in the Development of Patient-Centered Patient Reported Outcomes, click here to view.
Value-Based Insurance Design Benefit Offsets Reductions In Medication Adherence Associated With Switch To Deductible Plan, click here to view.
Doxycycline Versus Prednisolone as an Initial Treatment Strategy for Bullous Pemphigoid: A Pragmatic, Non-Inferiority, Randomised Controlled Trial, click here to view.
11. AHRQ Effective Program Updates
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, click here 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.
Treatments for Adults with Schizophrenia: A Systematic Review, click here to view.
Anxiety in Children, click here to view.
Patient Safety in Ambulatory Settings -- Disposition of Comments Report, click here to view.
Data Linkage Strategies To Advance Youth Suicide Prevention -- Disposition of Comments Report, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors -- Research Protocol, click here to view.
Obesity Prevention and Control -- Research Protocol, click here to view.
Telehealth for Acute and Chronic Care Consultations -- Research Protocol, click here to view.
PIPC Chairman Tony Coelho joined 38 patient groups in sending a letter to the Institute for Clinical and Economic Review (ICER) providing feedback on the proposed revisions to ICER’s value framework. In the letter, Chairman Coelho offers numerous suggestions urging ICER to formalize its patient engagement process within ICER’s value framework, with the focus of these suggestions centering around providing patient-centered reforms. As Chairman Coelho states, “Patients and their advocates will be the first to say that value is critical – improving health outcomes and making care efficient is a priority for our communities as well. We agree with ICER that stakeholders at all levels of health care require frameworks and tools to support their decision-making and achieve value, including payers. But regardless of the purpose of the framework or tool, or its intended audience, whether it’s payers, providers, or patients, it is crucial that the framework is patient-centered.” Click here to view the letter.
Additionally, comments were provided to ICER from other PIPC members, including the Cancer Support Community.
2. PIPC Welcomes the Association of University Centers on Disabilities to its Steering Committee
PIPC is thrilled to announce that the Association of University Centers on Disabilities (AUCD) has been added to the PIPC Steering Committee. Represented by Andy Imparato, AUCD focuses on advancing policies and practices that improve the health, education, social, and economic well-being of all people with developmental and other disabilities, their families, and their communities by supporting members in research, education, health, and service activities that achieve its vision.
3. PIPC Patient Blog: Abigail Lore
In a post on the PIPC Blog, college student Abigail Lore discusses the challenges of balancing diabetes management with academics. “I had 14 years of diabetes management under my belt when I was a freshman political science student at American University. I prepared and thought about my transition to college for weeks. I had registered with my school’s Academic Support and Access Center for accommodations, scoped out the dining hall offerings, and had the nerve-wracking talk with my roommate about the Emergency Glucagon Pen. But no level of preparation can prepare you for the ups and downs of having diabetes in college.”
“…Every diabetes patient is different, but for me, the hardest part of being at American were my blood sugar management and remembering to give insulin at mealtimes while balancing being a ‘regular college student.’ But more than that, what seemed next to impossible was figuring out the logistics of managing my diabetes supplies. This meant calculating when I had to reorder supplies, how long it would take to be shipped, and how long it would take to process through my university's package system – not to mention any appeals of prior authorizations I would have to facilitate over and over despite years of demonstrating the medical necessity of the supplies that work for me. It’s like having a double major, one in political science and one in diabetes supplies management.”
“…It is easy to feel defeated when you are surrounded by students performing at the best of their abilities. That’s especially true when you know if could just get access to your trusted insulin pump to spend more time in range, you too could feel that good, get those good grades, and land that prestigious internship. That is why comprehensive coverage for the diabetes equipment and supplies that work for each individual patient is vital, especially to college students.” Click here to view the blog post.
4. My Brother Patrick’s Dying Wish
Lisa Skemp offers some thoughts in a Next Avenue op-ed on her late brother Patrick’s family and health care providers in his final weeks. “Over the last two months, he was in three hospitals: a community hospital, a long-term acute care hospital and, lastly, a university hospital. Each organization had an interdisciplinary team of nurses, physicians, respiratory therapists, physical therapists, dietitians and ancillary staff with the goal of helping him “get better” and “get home” to his family as quickly as possible. He just wished (his health care workers) would listen to and believe him without him having to ‘prove’ his self-care awareness.” Click here to read the op-ed.
5. National Brain Tumor Society Launches Brain-Tumor Clinical Trial Finder
OncologyNurseAdvisor has the scoop on The National Brain Tumor Society’s (NBTS) launch of a new brain-tumor clinical trial finder to engage patients in new research and ease the process of finding clinical trials. From NBTS Clinical Trial Finder creator Michael Wenger: “I believe that greater awareness of available clinical trials can empower individual patients, as well as the entire brain tumor community, to get more involved in medical research and their own treatment planning.” Click here to read the article.
6. Focus on value: A prescription for pharma
John Glasspool and Thomas Bertels argue in a PMLiVE piece that the drug pricing debate demands a common understanding of value. “...Increasingly, payers, policymakers and providers are looking beyond the clinical data and asking for real-world evidence (RWE). Clinical development plans (CDP) need to evolve from delivering the data required for filing for approval and negotiating for reimbursement towards considering how to generate RWE that will support the value proposition beyond product launch for the entire product life cycle and towards a holistic understanding of how the treatment will impact the patient and caregiver experience.” Click here to view the article.
7. PCORI Blog: PCORI Projects Put Findings into Action
In a PCORI Blog post, Joanna Siegel, SM, ScD and Christopher Gayer, PhD touch on a new awards program within PCORI for researchers who want to take the next step in having their results influence care. “...As part of our efforts to ensure uptake of useful results in clinical practice, we have launched an awards program to enable teams that have completed a PCORI-funded research project to take the next step toward having their results influence care. These awards, which fund dissemination and implementation activities, help close the gap between research findings and use of that evidence in practice.” Click here to view the blog post.
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
Oncology Care Model Stakeholder Feedback Opportunity
May 11, 2017 Public Forum
Click here for details.
Getting to Know PCORI: From Application to Closeout
April 10 - 11, 2017
Click here for details.
CMS Measures under Consideration (MUC) 2017 Program Measurement Needs and Priorities
April 11, 2017
Click here for details.
Triangle Comparative Effectiveness Research Symposium
April 11, 2017
Click here for details.
Measure Authoring Tool (MAT) (eCQM Series)
April 12, 2017
Click here for details.
Cycle 1 2017 Improving Methods Applicant Town Hall
April 18, 2017
Click here for details.
Evaluating Patient Treatment Options: How Do We Know What Works Best?
April 18, 2017
Click here for details.
PCORI Funding Opportunities and Resources for Rare Disease Organizations
April 20, 2017
Click here for details.
Advisory Panel on Communication and Dissemination Research Spring 2017 Meeting
April 21, 2017
Click here for details.
PCORI Online Progress Report Webinar
April 24, 2017
Click here for details.
PCORI Board of Governors Meeting
April 25, 2017
Click here for details.
Advisory Panel on Rare Disease Spring 2017 Meeting
April 26, 2017
Click here for details.
PCORI Peer Review Webinar for Awardees
May 4, 2017
Click here for details.
OCM Stakeholder Public Forum
May 11, 2017
Click here for details.
Integrating PROs in EHRs: Presentation of a Users' Guide and Discussion of Standardization
May 25-26, 2017
Click here for details.
ICER Orphan Drug Assessment and Pricing Summit
May 31, 2017
Click here for details.
10. Medical Journal Articles
Comparative Effectiveness of Cefazolin versus Nafcillin or Oxacillin for Treatment of Methicillin-Susceptible Staphylococcus aureus Infections Complicated by Bacteremia: A Nationwide Cohort Study, click here to view.
Glucagon-like peptide-1 receptor agonists: a systematic review of comparative effectiveness research, click here to view.
Bridging the divide: building infrastructure to support community-academic partnerships and improve capacity to conduct patient-centered outcomes research, click here to view.
Reducing Barriers to Medication Access and Adherence for ACA and Medicaid Participants: A Peer-to-Peer, Community-Based Approach, click here to view.
Impact of a Value-Based Formulary in Three Chronic Disease Cohorts, click here to view.
Association Between Choice of Radical Prostatectomy, External Beam Radiotherapy, Brachytherapy, or Active Surveillance and Patient-Reported Quality of Life Among Men With Localized Prostate Cancer, click here to view.
Big Data: Will It Improve Patient-Centered Care?, click here to view.
A Review of HIV-Specific Patient-Reported Outcome Measures, click here to view.
Impact of Measuring Patient-Reported Outcomes in Dermatology Drug Development, click here to view.
Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research, click here to view.
A Patient and Provider Research Agenda on Diabetes and Hypertension Management, click here to view.
Comparative effectiveness of dual-action versus single-action antidepressants for the treatment of depression in people living with HIV/AIDS, click here to view
Patient-Reported Outcomes Following Treatment for Localized Prostate Cancer: Helping Decision Making for Patients and Their Physicians, click here to view
Vital Directions for Health and Health Care: Priorities From a National Academy of Medicine Initiative, click here to view
Translating Comparative Effectiveness Research Into Practice: Effects of Interventions on Lifestyle, Medication Adherence, and Self-Care for Type 2 Diabetes, Hypertension, and Obesity Among Black, Hispanic, and Asian Residents of Chicago and Houston, 2010 to 2013, click here to view.
Maintaining Primacy of the Patient Perspective in the Development of Patient-Centered Patient Reported Outcomes, click here to view.
Value-Based Insurance Design Benefit Offsets Reductions In Medication Adherence Associated With Switch To Deductible Plan, click here to view.
Doxycycline Versus Prednisolone as an Initial Treatment Strategy for Bullous Pemphigoid: A Pragmatic, Non-Inferiority, Randomised Controlled Trial, click here to view.
11. AHRQ Effective Program Updates
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, click here 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.
Treatments for Adults with Schizophrenia: A Systematic Review, click here to view.
Anxiety in Children, click here to view.
Patient Safety in Ambulatory Settings -- Disposition of Comments Report, click here to view.
Data Linkage Strategies To Advance Youth Suicide Prevention -- Disposition of Comments Report, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors -- Research Protocol, click here to view.
Obesity Prevention and Control -- Research Protocol, click here to view.
Telehealth for Acute and Chronic Care Consultations -- Research Protocol, click here to view.
