1. Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value, click here to read the summary.
2. BPC: PIPC on Panel on Future of Comparative Effectiveness Research, click here to view the webcast.
3. Tuesdays with Liz: PIPC Executive Director Sara van Geertruyden Discusses Importance of Patient-Centered Care, click here to watch the video.
4. PCORI Video: It All Started with Patient-Centeredness, click here to watch the video.
5. Mass Device: FDA sets inaugural meeting of first-ever Patient Engagement Advisory Committee, click here to read the article.
6. AMJC Video: Dr. Clifford Goodman — A Look at the Present and Future of Value Frameworks, click here to watch the video.
7. APPLY NOW! ONC Seeks Applications for Health Information Technology Advisory Committee, click here for additional details.
8. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation, click here to register.
9. Comment Now! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
10. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey.
11. Lupus: Patient-Focused Drug Development Meeting, click here to register!
12. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply.
13. Upcoming Events and Webinars, see details below
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.
On Friday, July 21, PIPC hosted a discussion panel entitled “Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value,” centered around the use of quality-adjusted-life- years by both researchers and policy-makers through the lens of creating a more patient-centered approach to measuring value in health care. The event followed the publication of a briefing paper by PIPC explaining the methodology for calculating a quality-adjusted-life-year (QALY), how it is used in cost effectiveness analyses, its implications for discrimination against people with disabilities and serious chronic conditions, as well as alternative patient-centered approaches being developed to align with assessing value to the patient.
PIPC Chairman Tony Coelho explained the issues surrounding the use of the quality-adjusted-life-year (QALY) as, “the academic is trying to determine whether the extra dollar spent is worth it. The health insurance company or policy-maker is telling us whether WE are worth it.” He explained that there is a renewed interest in cost effectiveness using the metric of a quality-adjusted-life year to determine the value of a test or treatment, especially in light of the recently announced partnership between the Veterans Administration and the Institute for Clinical Effectiveness Review (ICER) whose valuations are based on QALYs. He described an over-emphasis on reducing treatment costs, without consideration of personal and societal costs. Chairman Coelho emphasized the need to understand how policies provide or limit our access to care, and use our voice to ensure policymakers are getting it right.
While discussing the limitations of QALYs, the panel delved into the issue of potential discrimination against mentally and physically disabled people, as QALYs place greater value on years lived in full health while discounting gains in health for individuals with chronic illnesses or disabilities. These cost-effectiveness metrics can limit access to care and inhibit shared decision-making between physicians and patients. Alternatively, a patient perspective value framework centers around patient preferences and indicates improving quality of life. Throughout the discussion, the incorporation of principles of patient-centeredness into cost metrics and the broader healthcare system remained the top focus of panelists. Click here to read the summary.
2. BPC: PIPC on Panel on The Future of Comparative Effectiveness Research
On July 25, 2017, PIPC Executive Director Sara van Geertruyden participated in a Bipartisan Policy Center panel discussion about comparative effectiveness research (CER). The panel was the second in a series of educational forums on comparative effectiveness research that discussed federal funding levels, private sector leadership, regulatory barriers, dissemination and uptake of research results, and new areas for research. The event featured on the first panel former Senator Kent Conrad and former U.S. Representative Dr. Phil Gingrey. Senator Conrad described his work to advance legislation creating the Patient-Centered Outcomes Research Institute (PCORI), and the importance of its focus on conducting research that patients can use to make individual health decisions, but that does not drive coverage decisions nor base its assessments on quality-adjusted-life-years. Dr. Gingrey articulated his initial concerns that the House version of legislation would limit how physicians care for patients, but noted that the protections included in the final legislation proved to prevent misuse of CER, and indicated the institute was ultimately on track to provide valuable information to patients and providers. Sara van Geertruyden participated on the second panel along with Dr. Joel Kupersmith, Director of Georgetown University Veterans Initiatives, Jeffrey Lerner, Ph.D., President and CEO of ECRI Institute, Dr. Donald Liss, Former Vice-President for Clinical Programs & Policy at Independence Blue Cross, and Newell McElwee, Pharm.D., Vice President of Health Economics and Outcomes at Boehringer Ingelheim. Sara described that a key challenge for CER is deciding who CER is conducted for - the patient or the payer? If the patient is at the center, then CER has great potential to drive a patient-centered health system that achieves outcomes that matter to patients. Click here to view the webcast.
3. Tuesdays with Liz: PIPC Executive Director Sara van Geertruyden Discusses Importance of Patient-Centered Care
In the Association for University Centers on Disabilities video series ‘Tuesdays With Liz,” PIPC Executive director Sara van Geertruyden discusses the importance of patient-centered care with host Liz Weintraub. “When we say patient-centered healthcare system, what we really mean is a healthcare system that achieves outcomes that matter to patients and people with disabilities. That means we have to engage patients and people with disabilities at all levels of the healthcare system. It starts with engagement to develop the policies that determine what is and is not going to be covered. And it ends with patients in their doctor’s offices being truly engaged in a meaningful way in their own healthcare decision making.” Click here to watch the video.
4. PCORI Video: It All Started with Patient-Centeredness
In a new video, PCORI Executive Director Joe Selby describes the earliest stages of the organization’s patient-centered vision, starting with its name. “Patient-centered outcomes research meant research that matters to patients. It asks questions that matter to patients, and it studies outcomes that matters to patients.” Click here to watch the video.
5. Mass Device: FDA sets inaugural meeting of first-ever Patient Engagement Advisory Committee
Kathryn O'Callaghan and Jeffrey Shuren, M.D., J.D., report on the inaugural Patient Engagement Advisory Meeting led by the FDA for Mass Device. “...On Oct. 11-12, 2017, FDA will hold the inaugural meeting of the new Patient Engagement Advisory Committee (PEAC). The topic will be the challenges of clinical trial design, conduct, and reporting identified by patients. FDA chose this subject because patients often have concerns about participating in clinical trials or drop out once they have enrolled in a trial. Inconsistent or minimal participation in clinical trials can make it difficult to reach reliable conclusions or to determine the level of benefit for patients.” Click here to read the article.
6. AMJC Video: Dr Clifford Goodman — A Look at the Present and Future of Value Frameworks
Dr. Clifford Goodman comments on the present and future of value frameworks in a video by The American Journal of Managed Care. “Value frameworks are tools used to clarify cost-benefit tradeoffs in healthcare decisions, which means they can look very different depending on their intended audience, according to Clifford Goodman, PhD, moderator at the ACO Coalition spring live meeting in Scottsdale, Arizona, and senior vice president and director at the Center for Comparative Effectiveness Research at the Lewin Group.” Click here to watch the video.
7. APPLY NOW! ONC Seeks Applications for Health Information Technology Advisory Committee
The Office of the National Coordinator for Health Information Technology (ONC) today announced that they are seeking applications to the 21st Century Cures-established Health Information Technology Advisory Committee (HITAC). HITAC is responsible for recommending to the Secretary a policy framework for: advancing health technology infrastructure, protection of privacy and security of health information, and the facilitation of patient access to HIT, among other areas. Applications must be received by 12:00 p.m. on Friday, August 4, 2017, and should be submitted electronically through the application database on the HealthiT.gov website. The contact person listed in the announcement is Michelle Consolazio, email: email@example.com. Click here for additional details.
8. CMMI Summit: Behavioral Health Payment and Care Delivery Innovation
The Centers for Medicare & Medicaid Services, Center for Medicare & Medicaid Innovation (CMMI) will be hosting a one-day Summit on Friday, September 8, 2017 to be held at CMS Headquarters in Baltimore. “The purpose of the Summit is to discuss ideas for a potential behavioral health model to improve access, quality, and cost of care for beneficiaries with behavioral health conditions. Community health organizations, providers, patient advocacy groups, caregivers, non-Federal organizations, and other interested parties are invited to participate in this forum to present recommendations for payment or care delivery of behavioral health services and share experiences of delivering behavioral health services. The opinions and alternatives provided during this meeting will assist us as we explore the possibility of developing a model to address behavioral health payment and care delivery. The meeting is open to the public, but attendance is limited to the availability of space.” Click here to register.
9. Comment Now! CMS Rule on CY 2018 Updates to the Quality Payment Program
CMS is now accepting comments on a new rule that provides proposed updates for the second and future years of the Quality Payment Program “The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) established the Quality Payment Program for eligible clinicians. Under the Quality Payment Program, eligible clinicians can participate via one of two tracks: Advanced Alternative Payment Models (APMs); or the Merit-based Incentive Payment System (MIPS). We began implementing the Quality Payment Program through rulemaking for calendar year (CY) 2017.” Click here for details.
10. 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.
11. Lupus: Patient-Focused Drug Development Meeting
On September 25, 2017, 10:00 am - 4:00 pm at the College Park Marriott Hotel & Conference Center, three lupus organizations 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!
12. 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.
13. Upcoming Events and Webinars
Partnerships to Conduct Research within PCORnet (PaCR) Applicant Town Hall - Cycle 2 2017
August 23, 2017
Click here for details.
Infrastructure PPRN Off-Cycle LOI Submission Webinar
August 28, 2017
Click here for details.
Research!America's 2017 National Health Research Forum
September 7, 2017
Click here for details.
Public Workshop: A Framework for Regulatory Use of Real-World Evidence
September 13, 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
Click here for details.
Dissemination & Implementation Applicant Town Hall - Cycle 3 2017
October 13, 2017
Click here for details.
ASHRM 2017 Conference and Exhibition
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
14. Medical Journal Articles
Nonclinical Factors Affecting Shared Decision Making, click here to view.
The Importance of Model Inputs and Assumptions in Conducting Health Technology Assessments of Novel Drugs, click here to view.
From Evidence Based Medicine to Medicine Based Evidence, click here to view.
Depression, Anxiety and Stress Severities in Multiple Sclerosis Patients Using Injectable Versus Oral Treatments, click here to view.
Comparative Effectiveness of Surgery Versus Antibiotics in Acute Appendicitis: A Systematic Review Stephanie D Talutis and Frederick Thurston Drake, click here to view.
Patient-Reported Outcomes in Hematology: Is It Time to Focus More on Them in Clinical Trials and Hematology Practice? Click here to view.
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.
15. AHRQ Effective Program Updates
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
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