In This Week’s Issue:
1. National Health Council Webinar on Multi-Criteria Decision Analysis, click here to learn more and register.
2. Beyond Type 1 Offers Action Plans for Insulin Access, click here to visit GetInsulin.org.
3. Webinar on Understanding Value Assessment, click here to register.
4. Value Our Health Map on QALYs Around the World, click here to view the map.
5. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series, see details below.
6. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. National Health Council Webinar on Multi-Criteria Decision Analysis, click here to learn more and register.
2. Beyond Type 1 Offers Action Plans for Insulin Access, click here to visit GetInsulin.org.
3. Webinar on Understanding Value Assessment, click here to register.
4. Value Our Health Map on QALYs Around the World, click here to view the map.
5. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series, see details below.
6. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity, click here to learn more and register.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. National Health Council Webinar on Multi-Criteria Decision Analysis
On Thursday, October 15, 2020, the National Health Council will hold a webinar in tandem with release of a white paper summarizing findings from a Roundtable on Patient-Centered Multi-Criteria Decision Analysis (MCDA). Speakers will introduce MCDA and describe comments, suggestions, and takeaways that emerged during the discussion. Researchers, value assessors, and the patient community agree that conventional approaches to value assessment often inadequately account for the many dimensions of value important to patients. Researchers have identified multi-criteria decision analysis (MCDA) as one promising approach to provide a more comprehensive measure of value. The Webinar will take place at 11:00 a.m. on Thursday, October 15. Click here to learn more and register.
2. Beyond Type 1 Offers Action Plans for Insulin Access
Beyond Type 1, a group focused on the needs of individuals living with diabetes, launched GetInsulin.org, a website that helps patients access the insulin they need. It connects people living in the U.S. to the insulin access options that match their unique circumstances. On GetInsulin.org, users answer a few questions (such as location, insurance type, income, and prescription) then receive a customized action plan to access insulin. The site and action plans are available in English and Spanish. Click here to visit the website.
3. Webinar on Understanding Value Assessment
On Tuesday, October 13, 2020, the Pittsburgh Business Group on Health will hold a webinar on understanding value assessment tools. Panelists include Jennifer Bright, the Executive Director of the Innovation and Value Initiative (IVI), who will speak about the unique methods and tools that have been developed to support localized decision-making about health care value. The webinar will take place at 12:00 p.m. Eastern on Tuesday, October 13. Click here to register.
4. Value Our Health Map on QALYs Around the World
Quality-Adjusted Life Years (QALYs) are a number which (theoretically) represents the degree to which a drug or treatment extends life and improves quality of life. The QALY assigns a value to a human’s life on a scale between 0 and 1; 0 = dead and 1 = young and in perfect health. Are you worth treating? Is your treatment worth covering? In many countries, the QALY determines the answer. According to a 2019 report from the National Council on Disability, the use of the QALY in many foreign countries to inform benefits and coverage decisions has limited access to lifesaving medications for people with disabilities and those with chronic illnesses. Foreign reference pricing policies would bring QALYs, and the access barriers that come with them, to the U.S. Value Our Health has a new interactive map on how QALYs value patients around the world. Click here to view the map.
5. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series
At its September 2020 meeting, PCORI’s Board of Governors approved the release of the proposed Principles for the Consideration of the Full Range of Outcomes Data for public comment. This is one component in PCORI’s plan to implement its new statutory mandate to consider the full range of outcomes data in PCORI-funded research. Click here to view the transcripts of the meeting.
These principles will serve as a point of reference for PCORI, and as a basis for developing future guidance to potential applicants for PCORI funding on what is included in “the full range of clinical and patient-center outcomes relevant to, and that meet the needs of, patients, clinicians, purchasers, and policy-makers” consistent with its authorizing law. Comment will be open through November 13, 2020. Click here to read the principles and to submit comments.
During the comment period, PCORI will hold two panels highlighting perspectives on the new Principles. On October 5 from 2:30-4:00 p.m. Eastern, PCORI will hold a webinar focusing on patients, caregivers, and consumers. The following day, October 6 from 2:30-4:00 p.m. Eastern, PCORI will hold a webinar focusing on payer, provider, health system, and pharmaceutical industry perspectives.
6. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity
Join ADA 25 Advancing Leadership for a transformative multisession, multiday, forum centering in-depth, action-oriented conversations on the intersections of racial equity and disability justice. The forum, which is already underway, will take place over three more days, October 14, October 22, and October 27. Those interested can sign up for one or multiple sessions. This four-part series cements the connection between racial equity and disability justice. Local and nationally recognized social justice activists will share their stories, strategies, and hopes for the future. Click here to learn more and register.
7. 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.
8. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease
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.
9. Upcoming Events and Webinars
PCORI: New Evidence to Inform Decisions
October 16, 2020
Click here for details.
PCORI Advisory Panel on Clinical Trials Fall 2020 Meeting
November 6, 2020
Click here for details.
An Introduction to Real-World Data & Real-World Evidence: A Virtual Training Series for the Patient Community
November 13, 2020
Click here for details.
10. Medical Journal Articles
Researchers, Patients, and Other Stakeholders' Perspectives on Challenges to and Strategies for Engagement, click here to view.
Accounting for US Public Funding in Drug Development: How Can We Better Balance Access, Affordability, and Innovation?, click here to view.
Competencies for Professionals in Health Economics and Outcomes Research: The ISPOR Health Economics and Outcomes Research Competencies Framework, click here to view.
Translating Stakeholder-Driven Comparative Effectiveness Research into Practice: The PCORnet Bariatric Study, click here to view.
Registries for Evaluating Patient Outcomes: A User's Guide: 4th Edition, click here to view.
Replication of Randomized Clinical Trial Results Using Real-World Data: Paving the Way for Effectiveness Decisions, click here to view.
Improving Transparency to Build Trust in Real-World Secondary Data Studies for Hypothesis Testing—Why, What, and How: Recommendations and a Road Map from the Real-World Evidence Transparency Initiative, click here to view.
Measuring and Improving Quality in the US: Where Are We Today?, click here to view.
Potential Impact of Missing Outcome Data on Treatment Effects in Systematic Reviews: Imputation Study, click here to view.
Advancing Community-Engaged Research: Increasing Trustworthiness Within Community-Academic Partnerships, click here to view.
Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases, click here to view.
Patient-Reported Outcomes: Central to the Management of COVID-19, click here to view.
11. AHRQ Effective Program Updates
OPEN FOR COMMENT THROUGH 11/4/2020: Technical Brief: Disparities and Barriers for Pediatric Cancer Survivorship Care. Click here to view.
Rapid Evidence Product: Resource Allocation and Pandemic Response: An Evidence Synthesis To Inform Decision Making. Click here to view.
Systematic Review: Management of Colonic Diverticulitis. Click here to view.
OPEN FOR COMMENT THROUGH 10/23/2020: Key Questions: Diagnostic Errors in the Emergency Department. Click here to view.
No-Touch Modalities for Disinfecting Patient Rooms in Acute Care Settings: A Rapid Review. Click here to view.
OPEN FOR COMMENT THROUGH 10/20/2020: Technical Brief: Interventions To Decrease Hospital Length of Stay. Click here to view.
Systematic Review: Therapies for Clinically Localized Prostate Cancer. Click here to view.
Research Report: Developing Consistent and Useful Quality Improvement Study Data Extraction for Health Systems. Click here to view.
Technical Brief: Strategies for Patient, Family, and Caregiver Engagement. Click here to view.
Research Protocol: Interventions To Decrease Hospital Length of Stay. Click here to view.
On Thursday, October 15, 2020, the National Health Council will hold a webinar in tandem with release of a white paper summarizing findings from a Roundtable on Patient-Centered Multi-Criteria Decision Analysis (MCDA). Speakers will introduce MCDA and describe comments, suggestions, and takeaways that emerged during the discussion. Researchers, value assessors, and the patient community agree that conventional approaches to value assessment often inadequately account for the many dimensions of value important to patients. Researchers have identified multi-criteria decision analysis (MCDA) as one promising approach to provide a more comprehensive measure of value. The Webinar will take place at 11:00 a.m. on Thursday, October 15. Click here to learn more and register.
2. Beyond Type 1 Offers Action Plans for Insulin Access
Beyond Type 1, a group focused on the needs of individuals living with diabetes, launched GetInsulin.org, a website that helps patients access the insulin they need. It connects people living in the U.S. to the insulin access options that match their unique circumstances. On GetInsulin.org, users answer a few questions (such as location, insurance type, income, and prescription) then receive a customized action plan to access insulin. The site and action plans are available in English and Spanish. Click here to visit the website.
3. Webinar on Understanding Value Assessment
On Tuesday, October 13, 2020, the Pittsburgh Business Group on Health will hold a webinar on understanding value assessment tools. Panelists include Jennifer Bright, the Executive Director of the Innovation and Value Initiative (IVI), who will speak about the unique methods and tools that have been developed to support localized decision-making about health care value. The webinar will take place at 12:00 p.m. Eastern on Tuesday, October 13. Click here to register.
4. Value Our Health Map on QALYs Around the World
Quality-Adjusted Life Years (QALYs) are a number which (theoretically) represents the degree to which a drug or treatment extends life and improves quality of life. The QALY assigns a value to a human’s life on a scale between 0 and 1; 0 = dead and 1 = young and in perfect health. Are you worth treating? Is your treatment worth covering? In many countries, the QALY determines the answer. According to a 2019 report from the National Council on Disability, the use of the QALY in many foreign countries to inform benefits and coverage decisions has limited access to lifesaving medications for people with disabilities and those with chronic illnesses. Foreign reference pricing policies would bring QALYs, and the access barriers that come with them, to the U.S. Value Our Health has a new interactive map on how QALYs value patients around the world. Click here to view the map.
5. PCORI Proposed Principles for the Consideration of the Full Range of Outcomes Data and Webinar Series
At its September 2020 meeting, PCORI’s Board of Governors approved the release of the proposed Principles for the Consideration of the Full Range of Outcomes Data for public comment. This is one component in PCORI’s plan to implement its new statutory mandate to consider the full range of outcomes data in PCORI-funded research. Click here to view the transcripts of the meeting.
These principles will serve as a point of reference for PCORI, and as a basis for developing future guidance to potential applicants for PCORI funding on what is included in “the full range of clinical and patient-center outcomes relevant to, and that meet the needs of, patients, clinicians, purchasers, and policy-makers” consistent with its authorizing law. Comment will be open through November 13, 2020. Click here to read the principles and to submit comments.
During the comment period, PCORI will hold two panels highlighting perspectives on the new Principles. On October 5 from 2:30-4:00 p.m. Eastern, PCORI will hold a webinar focusing on patients, caregivers, and consumers. The following day, October 6 from 2:30-4:00 p.m. Eastern, PCORI will hold a webinar focusing on payer, provider, health system, and pharmaceutical industry perspectives.
6. ADA 25 Advancing Leadership Forum on Disability Justice in the Fight for Racial Equity
Join ADA 25 Advancing Leadership for a transformative multisession, multiday, forum centering in-depth, action-oriented conversations on the intersections of racial equity and disability justice. The forum, which is already underway, will take place over three more days, October 14, October 22, and October 27. Those interested can sign up for one or multiple sessions. This four-part series cements the connection between racial equity and disability justice. Local and nationally recognized social justice activists will share their stories, strategies, and hopes for the future. Click here to learn more and register.
7. 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.
- New Zealand: A proposal to boost Pharmac funding is inadequate to save lives. Pharmac's "inhumane" funding decisions are hurting individuals with inflammatory bowel disease.
8. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease
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.
- Ulcerative Colitis: Revised Voting Questions and Evidence Report AVAILABLE. 10/16/2020: Final Policy Recommendations and Final Evidence Report.
- Sickle Cell Disease: Evidence Report and Responses to Comments AVAILABLE. Meeting POSTPONED: New England CEPAC will convene to deliberate and vote on evidence presented in ICER's report on treatments for sickle cell disease.
- Hemophilia A: 10/16/2020: Evidence Report. Meeting 10/30/2020: New England CEPAC will convene to deliberate and vote on evidence presented in ICER's report on treatments for hemophilia.
- Bladder Cancer: Draft Evidence Report AVAILABLE. Comment period OPEN through 10/15/2020. Meeting 11/20/2020: Midwest CEPAC will convene virtually to deliberate and vote on evidence presented in ICER's report on digital therapeutics for bladder cancer.
- Opioids: Digital Apps: Draft Evidence Report AVAILABLE, comment period OPEN through 10/15/2020. Meeting 11/18/2020: Midwest CEPAC will convene virtually to deliberate and vote on evidence presented in ICER's report on digital therapeutics for opioid use disorder (OUD).
- Opioids: Supervised Injection Centers: Draft Evidence Report AVAILABLE, comment period OPEN through 10/22/2020. Meeting 12/3/2020: The New England CEPAC will convene to deliberate and vote on evidence presented in ICER's report on supervised injection facilities.
- High Cholesterol: Model Analysis Plan available. 11/12/2020: Draft Evidence Report.
- Anemia in Chronic Kidney Disease: Research Protocol available. 10/15/2020: Model Analysis Plan.
- Unsupported Price Increase Assessment: 1/8/2021: Final Assessment and Report.
- Lupus Nephritis: Research Protocol available. 11/20/2020: Model Analysis Plan. Meeting 3/26/2021: New England CEPAC will convene to deliberate and vote on evidence presented in ICER's report on treatments for lupus nephritis.
- Multiple Myeloma: Draft Scoping Document available, comment period OPEN through TODAY, 10/13/2020.
- Service Dogs for PTSD: 11/30/2020: Final Assessment and Report.
- Alzheimer's Disease: Open Input Period through 10/16/2020. Meeting 5/7/2020: CTAF will convene virtually to deliberate and vote on evidence presented in ICER's report on Alzheimer's disease.
9. Upcoming Events and Webinars
PCORI: New Evidence to Inform Decisions
October 16, 2020
Click here for details.
PCORI Advisory Panel on Clinical Trials Fall 2020 Meeting
November 6, 2020
Click here for details.
An Introduction to Real-World Data & Real-World Evidence: A Virtual Training Series for the Patient Community
November 13, 2020
Click here for details.
10. Medical Journal Articles
Researchers, Patients, and Other Stakeholders' Perspectives on Challenges to and Strategies for Engagement, click here to view.
Accounting for US Public Funding in Drug Development: How Can We Better Balance Access, Affordability, and Innovation?, click here to view.
Competencies for Professionals in Health Economics and Outcomes Research: The ISPOR Health Economics and Outcomes Research Competencies Framework, click here to view.
Translating Stakeholder-Driven Comparative Effectiveness Research into Practice: The PCORnet Bariatric Study, click here to view.
Registries for Evaluating Patient Outcomes: A User's Guide: 4th Edition, click here to view.
Replication of Randomized Clinical Trial Results Using Real-World Data: Paving the Way for Effectiveness Decisions, click here to view.
Improving Transparency to Build Trust in Real-World Secondary Data Studies for Hypothesis Testing—Why, What, and How: Recommendations and a Road Map from the Real-World Evidence Transparency Initiative, click here to view.
Measuring and Improving Quality in the US: Where Are We Today?, click here to view.
Potential Impact of Missing Outcome Data on Treatment Effects in Systematic Reviews: Imputation Study, click here to view.
Advancing Community-Engaged Research: Increasing Trustworthiness Within Community-Academic Partnerships, click here to view.
Patient and Other Stakeholder Engagement in Patient-Centered Outcomes Research Institute Funded Studies of Patients with Kidney Diseases, click here to view.
Patient-Reported Outcomes: Central to the Management of COVID-19, click here to view.
11. AHRQ Effective Program Updates
OPEN FOR COMMENT THROUGH 11/4/2020: Technical Brief: Disparities and Barriers for Pediatric Cancer Survivorship Care. Click here to view.
Rapid Evidence Product: Resource Allocation and Pandemic Response: An Evidence Synthesis To Inform Decision Making. Click here to view.
Systematic Review: Management of Colonic Diverticulitis. Click here to view.
OPEN FOR COMMENT THROUGH 10/23/2020: Key Questions: Diagnostic Errors in the Emergency Department. Click here to view.
No-Touch Modalities for Disinfecting Patient Rooms in Acute Care Settings: A Rapid Review. Click here to view.
OPEN FOR COMMENT THROUGH 10/20/2020: Technical Brief: Interventions To Decrease Hospital Length of Stay. Click here to view.
Systematic Review: Therapies for Clinically Localized Prostate Cancer. Click here to view.
Research Report: Developing Consistent and Useful Quality Improvement Study Data Extraction for Health Systems. Click here to view.
Technical Brief: Strategies for Patient, Family, and Caregiver Engagement. Click here to view.
Research Protocol: Interventions To Decrease Hospital Length of Stay. Click here to view.
