In This Week’s Issue:
1. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards, click here to read more.
2. Friends of PCORI Reauthorization Event, see details below.
3. Chairman's Corner: ICER Misses the Mark Again, click here to read the blog.
4. PIPC: Don't Discriminate on Care, click here to view.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
6. IFAA Hosts Inaugural ACTion Council meeting, see details below.
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards, click here to read more.
2. Friends of PCORI Reauthorization Event, see details below.
3. Chairman's Corner: ICER Misses the Mark Again, click here to read the blog.
4. PIPC: Don't Discriminate on Care, click here to view.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
6. IFAA Hosts Inaugural ACTion Council meeting, see details below.
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Summary of PIPC's 9th Annual Forum: Building Patient-Centered Value Standards
As health care policymakers are proposing new payment incentives and building so-called “value standards,” patient advocates and health policy experts have concluded that patients and people with disabilities should lead the way on creating new solutions. That was the message from a panel of leading experts on defining “value to the patient,” who joined a spirited discussion on the future of value-based care at PIPC’s 9th Annual Forum in Washington D.C. While the panelists concluded that the move to "value" can help patients by promoting access to affordable care they value, in practice, it became apparent that many real-world examples of moving to value leave patients and people with disabilities behind. Instead the panelists outlined a slate of alternative, evidence-based strategies that represent the future of how the heath care system can make decisions that reflect the values of patients. Click here to read more.
2. Friends of PCORI Reauthorization Discussion
PIPC Chairman Tony Coelho will be joined by former Congressman Phil Gingrey for a bipartisan discussion and lunch on January 15, 2019 and to hear from fellow advocates and policymakers about PCORI reauthorization. If you are looking for a way to engage in the process of supporting PCORI’s reauthorization, please join us! Click here to RSVP. Click here for additional information about Friends of PCORI Reauthorization.
When: January 15, 2019
Time: Noon-1:30 p.m.
Where:
District Policy Group, 1500 K Street, N.W., 11th Floor
3. Chairman's Corner: ICER Misses the Mark Again
In the newest Chairman's Corner Blog, PIPC Chairman Tony Coelho notes that ICER's new value metric, the Equal Value of Life Years Gained (evLYG), has similar implications for potential discrimination as ICER's QALY metric. Chairman Coelho stated, "Having authored the Americans with Disabilities Act (ADA), I have dedicated myself to eradicating discrimination and ensuring protections for the most vulnerable in our society. As a 76-year-old with epilepsy, this is a profoundly personal mission for me. I applaud ICER for its long-overdue recognition that use of the cost-per-QALY metric in health care decision-making discriminates. This is not just a 'concern' raised by some groups, as suggested in ICER’s materials, but an established reality that is readily acknowledged by many academics. However, I am deeply disappointed that ICER’s answer is a false choice between two fundamentally flawed standards. Instead, we support a new breed of health economists and researchers committed to innovative methods of value assessment for use by insurers and others that appropriately capture what matters most to patients, seniors, people with disabilities, and people who identify with historically marginalized populations. While we acknowledge ICER is attempting to address one of the many shortcomings of the QALY, it is not helpful that insurers and others can now choose between a standard that ignores many of the health and quality of life benefits that matter to patients and their caregivers or one that inherently discriminates.” Click here to read the entire blog.
4. PIPC: Don't Discriminate on Care
Patients and people with disabilities face major threats as private insurers and government programs look to cut costs using quality-adjusted-life-years (QALYs) and other assessments that discriminate against patients, people with disabilities and seniors. Recently, new threats have emerged, including:
Join us in opposing discriminatory denials of care across our health insurance system. Patients and people with disabilities deserve to have our lives valued, because nobody should be considered too expensive to get the care they need. Click here to learn more. Click here to view our petition.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care. In New Zealand, patients are not getting access to treatment, and some are forced to leave the country to access treatments. Click here, here and here to read more. In Canada, click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here to learn about patients seeking medications for heart pain being denied access. Spinal muscular atrophy advocates are similarly petitioning Health Canada to expand access to treatment. Click here to view the article. Similarly, in the United Kingdom, activists fight for access to treatments for cystic fibrosis and cancer. Click here and here for articles related to cystic fibrosis, and here for an article related to limited access to treatments for lung cancer. The Wall Street Journal’s Editorial Board recently opined on "why the U.S. shouldn’t put the world’s most innovative drug market at the mercy of what Greece is willing to pay for a cancer treatment.” Click here to view.
6. IFAA Hosts Inaugural ACTion Council Meeting
A global effort to track patient engagement in rheumatology research will result in fewer duplicated efforts, improved value measurements, new guidance materials, and accelerated innovative advancements. Since patient collaboration is popularizing, several groups have recognized a need to unite a global representation of stakeholders to help track patient engagement in research. However, until now, none of these efforts focus solely on the rheumatology space or are led by the patient stakeholders who have been part of its' history.
The ACTion Council held their inaugural meeting on October 23rd, 2018, where they worked on their first deliverables. These included:
In addition to completing these first “ACTion Items,” in 2019 the Council will identify any new barriers and benefits to engagement based on expanded patient roles and begin developing guidance materials for those stakeholders new to collaboration.
The ACTion Council is comprised of key stakeholders who have been pivotal in changing the paradigm of patient involvement in rheumatology research today, seventy-percent of whom are patients. It is led by Tiffany Westrich-Robertson (IFAA) in the United States, Maarten de Wit (EULAR PARE) in Europe, and Cheryl Koehn (Arthritis Consumer Experts/JointHealth) in Canada. Learn more about the ACTion Council: https://www.aiarthritis.org/action-council
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
Hereditary Angiodema: Final report available.
Opioid Use Disorder: Final report available.
Asthma: 11/29/18 Midwest CEPAC meeting, register here.
Spinal Muscular Atrophy: Draft Evidence Report on 12/20/2018.
Depression: Revised scoping document available on treatment-resistant depression. Also note interventions of interest for 2019 review: Esketamine (Janssen)
Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis.
Peanut Allergy: Stakeholder list available. Revised scoping document on 12/20/2018.
8. Upcoming Events and Webinars
Cycle 1 2019 Improving Methods Applicant Town Hall
January 16, 2019
Click here for details.
Cycle 1 2019 Treatment of Posttraumatic Stress Disorder in Adults Applicant Town Hall
January 17, 2019
Click here for details.
Cycle 1 2019 Treatment of Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall
January 22, 2019
Click here for details.
Pharmacological Treatment for Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall -- Cycle 1 2019
January 22, 2019
Click here for details.
Cycle 1 2019 Broad PFAs Applicant Town Hall
January 23, 2019
Click here for details
PCORI Board of Governors Meeting
January 29, 2019
Click here for details.
Patient Registries and Real-World Evidence Summit J
January 30-31, 2019
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 2019,
Click here for details.
9. Medical Journal Articles
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
Developing a Patient-Centered Outcome for Targeting Early Childhood Obesity Across Multiple Stakeholders, click here to view.
Cancer Patient Perspectives on the Use of Clinical Pathways and Shared Decision-Making in Cancer Care, click here to view.
In Proportion: Approaches for Displaying Patient-reported Outcome Research Study Results as Percentages Responding to Treatment, click here to view.
If Patients Are the True North, Patient-Centeredness Should Guide Research, click here to view.
Understanding and Improving Value Frameworks With Real-World Patient Outcomes, click here to view.
Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project, click here to view.
Comparative Effectiveness and Safety of Bariatric Procedures for Weight Loss: A PCORnet Cohort Study, click here to view.
Oh, the Places We'll Go: Patient-Reported Outcomes and Electronic Health Records, click here to view.
Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments, click here to view.
10. AHRQ Effective Program Updates
Stroke Prevention in Patients With Atrial Fibrillation: A Systematic Review Update, click here to view.
Long-term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention: A Systematic Review, click here to view.
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
As health care policymakers are proposing new payment incentives and building so-called “value standards,” patient advocates and health policy experts have concluded that patients and people with disabilities should lead the way on creating new solutions. That was the message from a panel of leading experts on defining “value to the patient,” who joined a spirited discussion on the future of value-based care at PIPC’s 9th Annual Forum in Washington D.C. While the panelists concluded that the move to "value" can help patients by promoting access to affordable care they value, in practice, it became apparent that many real-world examples of moving to value leave patients and people with disabilities behind. Instead the panelists outlined a slate of alternative, evidence-based strategies that represent the future of how the heath care system can make decisions that reflect the values of patients. Click here to read more.
2. Friends of PCORI Reauthorization Discussion
PIPC Chairman Tony Coelho will be joined by former Congressman Phil Gingrey for a bipartisan discussion and lunch on January 15, 2019 and to hear from fellow advocates and policymakers about PCORI reauthorization. If you are looking for a way to engage in the process of supporting PCORI’s reauthorization, please join us! Click here to RSVP. Click here for additional information about Friends of PCORI Reauthorization.
When: January 15, 2019
Time: Noon-1:30 p.m.
Where:
District Policy Group, 1500 K Street, N.W., 11th Floor
3. Chairman's Corner: ICER Misses the Mark Again
In the newest Chairman's Corner Blog, PIPC Chairman Tony Coelho notes that ICER's new value metric, the Equal Value of Life Years Gained (evLYG), has similar implications for potential discrimination as ICER's QALY metric. Chairman Coelho stated, "Having authored the Americans with Disabilities Act (ADA), I have dedicated myself to eradicating discrimination and ensuring protections for the most vulnerable in our society. As a 76-year-old with epilepsy, this is a profoundly personal mission for me. I applaud ICER for its long-overdue recognition that use of the cost-per-QALY metric in health care decision-making discriminates. This is not just a 'concern' raised by some groups, as suggested in ICER’s materials, but an established reality that is readily acknowledged by many academics. However, I am deeply disappointed that ICER’s answer is a false choice between two fundamentally flawed standards. Instead, we support a new breed of health economists and researchers committed to innovative methods of value assessment for use by insurers and others that appropriately capture what matters most to patients, seniors, people with disabilities, and people who identify with historically marginalized populations. While we acknowledge ICER is attempting to address one of the many shortcomings of the QALY, it is not helpful that insurers and others can now choose between a standard that ignores many of the health and quality of life benefits that matter to patients and their caregivers or one that inherently discriminates.” Click here to read the entire blog.
4. PIPC: Don't Discriminate on Care
Patients and people with disabilities face major threats as private insurers and government programs look to cut costs using quality-adjusted-life-years (QALYs) and other assessments that discriminate against patients, people with disabilities and seniors. Recently, new threats have emerged, including:
- A pharmacy benefit manager’s new plan to limit access to prescription drugs using a rigid cost-per-QALY threshold, similar to that used by the United Kingdom’s National Health Service;
- The use of cost-per-QALY thresholds in New York’s Medicaid program;
- A new Medicare proposal that would set reimbursement for physician-administered medicines based off of decisions made in countries that use WALYs and cost effectiveness thresholds to set national coverage.
Join us in opposing discriminatory denials of care across our health insurance system. Patients and people with disabilities deserve to have our lives valued, because nobody should be considered too expensive to get the care they need. Click here to learn more. Click here to view our petition.
5. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care. In New Zealand, patients are not getting access to treatment, and some are forced to leave the country to access treatments. Click here, here and here to read more. In Canada, click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here to learn about patients seeking medications for heart pain being denied access. Spinal muscular atrophy advocates are similarly petitioning Health Canada to expand access to treatment. Click here to view the article. Similarly, in the United Kingdom, activists fight for access to treatments for cystic fibrosis and cancer. Click here and here for articles related to cystic fibrosis, and here for an article related to limited access to treatments for lung cancer. The Wall Street Journal’s Editorial Board recently opined on "why the U.S. shouldn’t put the world’s most innovative drug market at the mercy of what Greece is willing to pay for a cancer treatment.” Click here to view.
6. IFAA Hosts Inaugural ACTion Council Meeting
A global effort to track patient engagement in rheumatology research will result in fewer duplicated efforts, improved value measurements, new guidance materials, and accelerated innovative advancements. Since patient collaboration is popularizing, several groups have recognized a need to unite a global representation of stakeholders to help track patient engagement in research. However, until now, none of these efforts focus solely on the rheumatology space or are led by the patient stakeholders who have been part of its' history.
The ACTion Council held their inaugural meeting on October 23rd, 2018, where they worked on their first deliverables. These included:
- A history of rheumatology research timeline, referencing influential groups and pivotal projects. This tool will help prevent duplication of efforts and promote projects that build on past successes.
- A list of Concepts of Involvement, including published methods of engagement, terms designated by individual groups, and existing terms with evolving definitions. Tracking this will be imperative when measuring value across projects, rather than on a case by case basis.
- An assessment of patient roles, based on levels of experience and associated value, which will help match the right patient for each project.
In addition to completing these first “ACTion Items,” in 2019 the Council will identify any new barriers and benefits to engagement based on expanded patient roles and begin developing guidance materials for those stakeholders new to collaboration.
The ACTion Council is comprised of key stakeholders who have been pivotal in changing the paradigm of patient involvement in rheumatology research today, seventy-percent of whom are patients. It is led by Tiffany Westrich-Robertson (IFAA) in the United States, Maarten de Wit (EULAR PARE) in Europe, and Cheryl Koehn (Arthritis Consumer Experts/JointHealth) in Canada. Learn more about the ACTion Council: https://www.aiarthritis.org/action-council
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
Hereditary Angiodema: Final report available.
Opioid Use Disorder: Final report available.
Asthma: 11/29/18 Midwest CEPAC meeting, register here.
Spinal Muscular Atrophy: Draft Evidence Report on 12/20/2018.
Depression: Revised scoping document available on treatment-resistant depression. Also note interventions of interest for 2019 review: Esketamine (Janssen)
Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis.
Peanut Allergy: Stakeholder list available. Revised scoping document on 12/20/2018.
8. Upcoming Events and Webinars
Cycle 1 2019 Improving Methods Applicant Town Hall
January 16, 2019
Click here for details.
Cycle 1 2019 Treatment of Posttraumatic Stress Disorder in Adults Applicant Town Hall
January 17, 2019
Click here for details.
Cycle 1 2019 Treatment of Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall
January 22, 2019
Click here for details.
Pharmacological Treatment for Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall -- Cycle 1 2019
January 22, 2019
Click here for details.
Cycle 1 2019 Broad PFAs Applicant Town Hall
January 23, 2019
Click here for details
PCORI Board of Governors Meeting
January 29, 2019
Click here for details.
Patient Registries and Real-World Evidence Summit J
January 30-31, 2019
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 2019,
Click here for details.
9. Medical Journal Articles
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
Developing a Patient-Centered Outcome for Targeting Early Childhood Obesity Across Multiple Stakeholders, click here to view.
Cancer Patient Perspectives on the Use of Clinical Pathways and Shared Decision-Making in Cancer Care, click here to view.
In Proportion: Approaches for Displaying Patient-reported Outcome Research Study Results as Percentages Responding to Treatment, click here to view.
If Patients Are the True North, Patient-Centeredness Should Guide Research, click here to view.
Understanding and Improving Value Frameworks With Real-World Patient Outcomes, click here to view.
Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project, click here to view.
Comparative Effectiveness and Safety of Bariatric Procedures for Weight Loss: A PCORnet Cohort Study, click here to view.
Oh, the Places We'll Go: Patient-Reported Outcomes and Electronic Health Records, click here to view.
Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments, click here to view.
10. AHRQ Effective Program Updates
Stroke Prevention in Patients With Atrial Fibrillation: A Systematic Review Update, click here to view.
Long-term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention: A Systematic Review, click here to view.
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
