1. Save the Date: PIPC Hosts Panel Discussion on QALYs (July 21), click here for details, and here to RSVP.
2. PIPC Publishes White Paper on ‘Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value,’ click here to view.
3. STAT: Missing from the Debate Over Health Care: Patients’ Voices, click here to read the article.
4. Experts Convene for Summit on Cancer Moonshot Initiative, see details below.
5. Will Value Assessment Frameworks Promote Health Value and Access for Veterans?, click here to view the blog post.
6. AARP Announces ‘Community Challenge’ Grants, click here for more information and here to submit an application.
7. Lupus: FDA Patient-Focused Drug Development Meeting, click here to register.
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.
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 Publishes White Paper on Uses and Misuses of the QALY - Ethical Issues and Alternative Measures of Value
Last week, PIPC published a white paper entitled ‘Uses and Misuses of the QALY: Ethical Issues and Alternative Measures of Value.’ 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 (QALY). 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.
In particular, QALYs are:
- Heavily dependent on the measurement instrument being used;
- Intended as a theoretical tool for academic researchers, not for decision-making that will impact actual patient lives;
- Developed from population averages, and are not patient-centered; and
- Widely acknowledged by experts to discriminate against people with disabilities.
While not without their place in academic research, QALYs are not the appropriate tool for assessing the value of healthcare interventions for real-world applications and decision-making. This brief provides an overview of the QALY, assesses its suitability as a mechanism to determine health care “value,” and provides information on alternative measures of value. Click here to view the issue brief.
3. STAT: Missing From the Debate Over Health Care: Patients’ Voices
Sally Okun comments on the need for patient voices in the ongoing healthcare reform debate for STAT. “Patients have the most extensive experience in dealing directly with our complicated health care system and also understand the stark reality of what it means to lose affordable access to health care. Without elevating the voice of patients and taking their thoughts to heart in forming this law, the country stands to harm individual and collective health outcomes. Their voices, not those of pundits and politicians, should take precedence in any conversation about what the best health plan for the people should look like.” Click here to read the article.
4. Experts Convene for Summit on Cancer Moonshot Initiative
Amid proposed federal government budget cuts, more than 250 cancer researchers, medical professionals, policymakers, patients, caregivers, survivors, and advocates conveneed in Washington, D.C. last week for Cancer Moonshot: One Year Later. The summit was jointly hosted by seven of the leading cancer organizations: Cancer Support Community (CSC), American Cancer Society Cancer Action Network (ACS CAN), CancerCare, Friends of Cancer Research, LIVESTRONG Foundation, National Coalition for Cancer Survivorship (NCCS), and the National Patient Advocate Foundation (NPAF). Following the launch of the Biden Cancer Initiative, the summit celebrated the Biden Cancer Moonshot Initiative’s first-year of progress, identified gaps, defined opportunities for ongoing and new collaborative action, and continued to build momentum around the national effort to end cancer as we know it.
Dr. Doug Lowy, Acting Director of the NCI, and Dr. Liz Jaffee, Professor and Deputy Director for Translational Research at the Sidney Kimmel Comprehensive Cancer Center, offered updates on recommendations from the Blue Ribbon Panel and how those initiatives are being pursued. Dr. Lowey indicated that every member of the panel understood that the patient needed to be at the center of each recommendation, and should encompass cancer prevention and survivorship as well as goals for treatment. Dr. Lowey reminded those present that $1.8 billion offered over the next seven years will be available in funding appropriated by the 21st Century Cures Act signed into law last year, and that over $300 million of that funding will be put towards initiatives in the next year alone. The doctor also spoke of the international impact Cancer Moonshot has had, and detailed an initiative to share research and understanding on genomic cancer research involving 11 different countries. He stated that the group is self-assembled and self-funded, and shares information regarding the cancers most prevalent in their own countries.
During a panel discussion, PCORI Executive Director Joe Selby declared that the institute has been funding cancer research since its founding six years ago, and advocated for a greater focus on research that uses patient-centered approaches. He stated that the institute immediately thought of its PCORNet Research Network when thinking about how it could assist the Cancer Moonshot initiative. Dr. Selby explained that the research network addresses some other challenges of traditional clinical research, such as the time and expense involved in developing a study, the lack of data on certain rare conditions or underserved populations, and the recognition that many studies don’t answer the questions most important to patients. All these issues can lead to study results that are of limited use to patients and others across the healthcare community, according to Dr. Selby. He identified the need for more individual level of data on patients as they develop and are treated for cancer in order to develop more innovative precision medicine. Additionally, he stated that PCORI will be working with researchers to gather data on off label uses of targeted therapies and rural cancer treatment. Click here for additional information.
5. Will Value Assessment Frameworks Promote Health Value and Access for Veterans?
Last week, the Institute for Clinical and Economic Review (ICER) and the U.S. Department of Veterans Affairs (VA) Pharmacy Benefits Management Services office announced a partnership to integrate ICER’s value assessment framework in the VA’s formulary management process. In a blog for the National Pharmaceutical Council, the authors suggest that “taking a ‘one-size-fits-all’ approach and using one framework alone to evaluate a health care treatment or intervention is not sufficient to determine care for a diverse population. When considering the varied and often complex health needs of veterans, decision-makers require far more information. Utilizing multiple frameworks and other decision-making tools can provide important and different perspectives, like those of physicians, consumers and especially patients.”
“In addition, ICER’s framework is heavily focused on a health system perspective, as is the VA. But looking through the health system lens alone minimizes the importance of societal benefits and costs and their impact on patients’ lives. Many factors that are important to veterans and their families are not typically considered or quantified in value assessments. For veterans who are seeking treatment for PTSD or other serious conditions, the ability to manage their mental and physical health, improve their quality of lives and reduce the burden on their families and other caregivers are among their many important concerns that are not often captured in an assessment.” Click here to view the blog post.
6. AARP Announces ‘Community Challenge’ Grants
To help support communities and create change in both AARP age-friendly network and non-network communities, AARP plays several key roles, including advocating on important issues, engaging citizens, providing resources and expertise, and serving as a catalyst and convener. The AARP Community Challenge will fund projects to help build momentum. If your idea is big, no project is too small. Projects can range from short-term activities costing a few hundred dollars to sizable efforts that might need thousands. Applications must be submitted by Saturday, July 15. Proposed projects must be completed no later than Wednesday, November 1. Click here for more information and here to submit an application.
7. 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!
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 Dissemination & Implementation Funding Opportunities Webinar
July 11, 2017
Click here for details.
Webinar: Same Condition, Different Costs: Should Patients Pay Different Amounts?
July 18, 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.
ASHRM 2017 Conference and Exhibition
Click here for details.
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
10. Medical Journal Articles
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.
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.
11. 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.