In This Week’s Issue:
1. Save the Date: PIPC Hosts Panel Discussion on QALYs (July 21), click here for details, and here to RSVP.
2. PIPC Submits Comment on RFI for Reducing Regulatory Burdens, click here to view.
3. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? click here to complete the survey.
4. Healthcare Informatics: Pilot Projects Seek to Move Patient-Centered Research Outcomes Into Clinical Decision Support, click here to read the article.
5. Lupus: FDA Patient-Focused Drug Development Meeting, click here to register
6. National Organization of Nurses with Disabilities on Need for Patient Voices, click here to view their perspectives.
7. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
8. Upcoming Events and Webinars, see details below
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Save the Date: PIPC Hosts Panel Discussion on QALYs (July 21), click here for details, and here to RSVP.
2. PIPC Submits Comment on RFI for Reducing Regulatory Burdens, click here to view.
3. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? click here to complete the survey.
4. Healthcare Informatics: Pilot Projects Seek to Move Patient-Centered Research Outcomes Into Clinical Decision Support, click here to read the article.
5. Lupus: FDA Patient-Focused Drug Development Meeting, click here to register
6. National Organization of Nurses with Disabilities on Need for Patient Voices, click here to view their perspectives.
7. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
8. Upcoming Events and Webinars, see details below
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Save the Date: PIPC Hosts Panel Discussion on QALYs (July 21)
Value assessment in general, and the use of cost-effectiveness in particular, is receiving renewed interest as a tool for controlling health care spending. Currently, the most common method for determining incremental cost-effectiveness of healthcare interventions is based on a calculation of quality-adjusted-life-years (QALYs). While the model has a basic appeal for making population-level decisions (by reducing patient populations to single, aggregate numeric values), it also poses several significant concerns from the vantage point of patient-centeredness and efforts to preserve access to needed care for individual patients and people with disabilities. Of particular concern to me are the implications of use of QALYs for discrimination against people with disabilities, and its conflicting goals from the goals of personalized medicine.
During the event, PIPC will highlight the perspectives of patients, researchers and providers in an effort to determine how to best move beyond QALYs and cost effectiveness to a health care system that achieves care that patients value. Click here for details, and here to RSVP.
2. PIPC Submits Comments for Reducing Regulatory Burden
PIPC submitted comments in response to the Request for Comment on “Reducing Regulatory Burdens Imposed by the Patient Protection and Affordable Care Act & Improving Healthcare Choices to Empower Patients.” Tony Coelho stated, "We are grateful that the administration wants to empower patients and promote consumer choice, as well as enhance affordability. In this age of personalized medicine, we strongly believe that the value of health care is defined by achieving outcomes that matter to patients in our health care system, not by imposing policies that drive one-size-fits-all treatment decisions. We look forward to patients and people with disabilities who are served by health systems having a seat at the table as policymakers determine how best to address the myriad of regulations that impact their care.” Click here to view.
PIPC’s recommendations include:
3. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions?
The Improving Hospital Outcomes through Patient Engagement (iHOPE) Steering Committee needs participants for a survey that will help research teams learn the questions that patients, families, caregivers, and other healthcare stakeholders want answered. “Are you a healthcare provider or a member of a healthcare-related organization? Are there any uncertainties about patient care during and after the hospital stay, or areas where you feel there should be more evidence to guide care? This could include any aspect of care - treatments, processes, decision-making, discharge planning, etc. “ Click here to complete the survey.
4. Healthcare Informatics: Pilot Projects Seek to Move Patient-Centered Research Outcomes Into Clinical Decision Support
David Raths repords on Geisinger’s efforts to promote more patient-centered research outcomes for Healthcare Informatics. “...Marc Williams, M.D., director of the Genomic Medicine Institute at Geisinger Health System, spoke about Geisinger's effort to make genomics results more useful to both patients and their providers...Geisinger is working to expand use of the reports for patients with breast cancer disorders. It is seeking PCORI funding to be able to use it to do dissemination across other sites and use cases.” Click here to read the article.
5. Lupus: FDA 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. National Organization of Nurses with Disabilities on Need for Patient Voices
The National Organization of Nurses with Disabilities provides perspectives from the point of view of their patients and has issued a call for policymakers to consider this patient perspective in their work. The National Organization of Nurses with Disabilities was founded in 2003 as a nonprofit organization in the state of Illinois. The organization members located across the nation are strong advocates for their patients as well as for nurses and other allied healthcare professional with disabilities that have been impacted by significant chronic health conditions and may be underemployed or unemployed and are recipients of Medicaid or Medicaid Waivers. Click here to view their perspectives.
7. 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.
8. Upcoming Events and Webinars
PCORI Dissemination & Implementation Funding Opportunities Webinar
July 11, 2017
Click here for details.
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Opioid Use Disorders (OUD) Applicant Town Hall - Cycle 2 2017
July 12, 2017
Click here for details.
PCORI Online LOI Submission Webinar for Cycle 2 2017 Applicants
July 17, 2017
Click here for details.
Webinar: Same Condition, Different Costs: Should Patients Pay Different Amounts?
July 18, 2017
Click here for details.
Patient and Stakeholder Engagement in Research: Strategies for Initiating Research Partnerships
July 19, 2017
Click here for details.
The Future of Comparative Effectiveness Research
July 25, 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.
ASHRM 2017 Conference and Exhibition
October 15-18
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
9. Medical Journal Articles
Discrete Event Simulation-Based Resource Modelling in Health Technology Assessment, click here to view.
Patient Preferences: A Trojan Horse for Evidence-Based Medicine? Click here to view.
Patient-Reported Outcomes — Are They Living Up to Their Potential? Click here to view.
The Mediatory Role of Medication Adherence in Improving Patients' Medication Experience Through Patient–Physician Communication among Older Hypertensive Patients, click here to view.
Comparative Effectiveness: 18F-FDG-PET/CT versus CT for Post-Treatment Follow-Up of Patients with Lung Cancer, click here to view.
Does the Offer of Free Prescriptions Increase Generic Prescribing? Click here to view.
Attitudes Toward Comparative Effectiveness Research and Patient Engagement among Reproductive Health Clinicians, click here to view.
Patient Engagement in Patient-Centered Outcomes Research: Challenges, Facilitators and Actions to Strengthen the Field, click here to view.
Comparative effectiveness research: what to do when experts disagree about risks, click here to view.
Evidence Based Medicine Manifesto for Better Healthcare, click here to view.
A Retrospective Analysis of the Comparative Effectiveness of Smoking Cessation Medication Among Individuals with Mental Illness in Community-Based Mental Health and Addictions Treatment Settings, click here to view.
Comparative Effectiveness and Costs of Insulin Pump Therapy for Diabetes, click here to view.
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.
10. AHRQ Effective Program Updates
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
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, 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.
Value assessment in general, and the use of cost-effectiveness in particular, is receiving renewed interest as a tool for controlling health care spending. Currently, the most common method for determining incremental cost-effectiveness of healthcare interventions is based on a calculation of quality-adjusted-life-years (QALYs). While the model has a basic appeal for making population-level decisions (by reducing patient populations to single, aggregate numeric values), it also poses several significant concerns from the vantage point of patient-centeredness and efforts to preserve access to needed care for individual patients and people with disabilities. Of particular concern to me are the implications of use of QALYs for discrimination against people with disabilities, and its conflicting goals from the goals of personalized medicine.
During the event, PIPC will highlight the perspectives of patients, researchers and providers in an effort to determine how to best move beyond QALYs and cost effectiveness to a health care system that achieves care that patients value. Click here for details, and here to RSVP.
2. PIPC Submits Comments for Reducing Regulatory Burden
PIPC submitted comments in response to the Request for Comment on “Reducing Regulatory Burdens Imposed by the Patient Protection and Affordable Care Act & Improving Healthcare Choices to Empower Patients.” Tony Coelho stated, "We are grateful that the administration wants to empower patients and promote consumer choice, as well as enhance affordability. In this age of personalized medicine, we strongly believe that the value of health care is defined by achieving outcomes that matter to patients in our health care system, not by imposing policies that drive one-size-fits-all treatment decisions. We look forward to patients and people with disabilities who are served by health systems having a seat at the table as policymakers determine how best to address the myriad of regulations that impact their care.” Click here to view.
PIPC’s recommendations include:
- CMMI should establish and consistently apply a clear process for seeking input from patients, caregivers and other stakeholders early in the process of developing and testing new APMs.
- Establish criteria for patient-centeredness in CMMI payment models;
- Balance consideration of reduced regulatory burden with the need for patients and consumers to be fully informed about their treatment options, the out-of-pocket costs associated with their treatment options, and incentives for physicians to adhere to care protocols or pathways that could limit their treatment options.
- Partner with PCORI and the Person Centered Research Foundation to focus on the rapid generation of head-to-head studies on the value of high-impact treatments, tests and health care interventions.
- Develop and use of high-quality decision-support tools would drive value in health care by informing patients and their providers on the impact of treatments stratified by individual health outcomes that represent tradeoffs that patients must consider, as well as patient characteristics and subpopulations.
- Partner with PCORI to establish databases to assist decision-makers in identifying patient-centered value.
3. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions?
The Improving Hospital Outcomes through Patient Engagement (iHOPE) Steering Committee needs participants for a survey that will help research teams learn the questions that patients, families, caregivers, and other healthcare stakeholders want answered. “Are you a healthcare provider or a member of a healthcare-related organization? Are there any uncertainties about patient care during and after the hospital stay, or areas where you feel there should be more evidence to guide care? This could include any aspect of care - treatments, processes, decision-making, discharge planning, etc. “ Click here to complete the survey.
4. Healthcare Informatics: Pilot Projects Seek to Move Patient-Centered Research Outcomes Into Clinical Decision Support
David Raths repords on Geisinger’s efforts to promote more patient-centered research outcomes for Healthcare Informatics. “...Marc Williams, M.D., director of the Genomic Medicine Institute at Geisinger Health System, spoke about Geisinger's effort to make genomics results more useful to both patients and their providers...Geisinger is working to expand use of the reports for patients with breast cancer disorders. It is seeking PCORI funding to be able to use it to do dissemination across other sites and use cases.” Click here to read the article.
5. Lupus: FDA 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. National Organization of Nurses with Disabilities on Need for Patient Voices
The National Organization of Nurses with Disabilities provides perspectives from the point of view of their patients and has issued a call for policymakers to consider this patient perspective in their work. The National Organization of Nurses with Disabilities was founded in 2003 as a nonprofit organization in the state of Illinois. The organization members located across the nation are strong advocates for their patients as well as for nurses and other allied healthcare professional with disabilities that have been impacted by significant chronic health conditions and may be underemployed or unemployed and are recipients of Medicaid or Medicaid Waivers. Click here to view their perspectives.
7. 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.
8. Upcoming Events and Webinars
PCORI Dissemination & Implementation Funding Opportunities Webinar
July 11, 2017
Click here for details.
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Opioid Use Disorders (OUD) Applicant Town Hall - Cycle 2 2017
July 12, 2017
Click here for details.
PCORI Online LOI Submission Webinar for Cycle 2 2017 Applicants
July 17, 2017
Click here for details.
Webinar: Same Condition, Different Costs: Should Patients Pay Different Amounts?
July 18, 2017
Click here for details.
Patient and Stakeholder Engagement in Research: Strategies for Initiating Research Partnerships
July 19, 2017
Click here for details.
The Future of Comparative Effectiveness Research
July 25, 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.
ASHRM 2017 Conference and Exhibition
October 15-18
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
9. Medical Journal Articles
Discrete Event Simulation-Based Resource Modelling in Health Technology Assessment, click here to view.
Patient Preferences: A Trojan Horse for Evidence-Based Medicine? Click here to view.
Patient-Reported Outcomes — Are They Living Up to Their Potential? Click here to view.
The Mediatory Role of Medication Adherence in Improving Patients' Medication Experience Through Patient–Physician Communication among Older Hypertensive Patients, click here to view.
Comparative Effectiveness: 18F-FDG-PET/CT versus CT for Post-Treatment Follow-Up of Patients with Lung Cancer, click here to view.
Does the Offer of Free Prescriptions Increase Generic Prescribing? Click here to view.
Attitudes Toward Comparative Effectiveness Research and Patient Engagement among Reproductive Health Clinicians, click here to view.
Patient Engagement in Patient-Centered Outcomes Research: Challenges, Facilitators and Actions to Strengthen the Field, click here to view.
Comparative effectiveness research: what to do when experts disagree about risks, click here to view.
Evidence Based Medicine Manifesto for Better Healthcare, click here to view.
A Retrospective Analysis of the Comparative Effectiveness of Smoking Cessation Medication Among Individuals with Mental Illness in Community-Based Mental Health and Addictions Treatment Settings, click here to view.
Comparative Effectiveness and Costs of Insulin Pump Therapy for Diabetes, click here to view.
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.
10. AHRQ Effective Program Updates
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
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, 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.
