In This Week’s Issue:
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models, click here to read the article.
2. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics, see details below.
4. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
5. Join the Headache Migraine Policy Forum and Migraine.com for a Facebook live event highlighting the patient voice on Migraine, prior to ICER’s meeting on Acute Migraine, see details below.
6. New Survey for Sickle Cell Patients and Caregivers, click here to take the survey.
7. Upcoming Sickle Cell Disease Webinar: Patient Group Interactions with ICER, see details below.
8. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director, click here to read the press release.
9. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment, click here to read more and to comment.
10. Recap of the 10th Annual PIPC Forum, click here to see more.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
12. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models, click here to read the article.
2. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics, see details below.
4. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
5. Join the Headache Migraine Policy Forum and Migraine.com for a Facebook live event highlighting the patient voice on Migraine, prior to ICER’s meeting on Acute Migraine, see details below.
6. New Survey for Sickle Cell Patients and Caregivers, click here to take the survey.
7. Upcoming Sickle Cell Disease Webinar: Patient Group Interactions with ICER, see details below.
8. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director, click here to read the press release.
9. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment, click here to read more and to comment.
10. Recap of the 10th Annual PIPC Forum, click here to see more.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
12. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models
In an op-ed published in The Hill, Gunnar Esiason, a patient living with cystic fibrosis writes that patients like him should not be denied access to life-changing medication because an economic model says that their life is too expensive to save. Mr. Esiason is now taking the new cystic fibrosis drug Trikafta, which he says has changed his life. "QALY is not adequately able to quantify what happened in my own life — my journey from near end-stage illness and no hope for a future to correctly managed CF and entrance into an elite graduate program," he wrote. "I certainly would like to know why cost-effectiveness is being used against me. Would the analysts at ICER prefer I return to a state of recurrent hospitalizations, traumatic medical procedures, bouts of hemoptysis (coughing up blood), and the fast track towards end-stage illness and disability income? Frankly, I consider the talk of cost-effectiveness to be not only discriminatory but also pure ableism." Click here to read the article.
2. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage
On December 12, 2019, the Colorado Department of Health CarePolicy and Financing released a report entitled “Reducing Prescription Drug Costs in Colorado.” The report proposes to reduce prescription drug costs in Colorado, including by “monitoring new ways to price prescription drugs, including QALY pricing methodologies.” The report specifically references ICER, stating, "A nonprofit in Boston called the Institute for Clinical and Economic Review (ICER) is using a calculation that factors in a dollar amount associated with being healthy in order to estimate how a drug should be priced...some drug manufacturers have moved toward aligning with ICER’s QALY-based dollar estimate when evaluating the price of certain newer drugs...Countries like Canada, Britain, Ireland and the Netherlands have used these types of calculations to leverage drug prices with manufacturers and to determine which drugs their government-funded health programs should cover...use of cost-per-QALY reporting such as that conducted by ICER may help payers leverage bigger discounts from drug makers, determine limitations to coverage for certain drugs, or indicate preferential coverage of alternative treatments with better estimated value. QALY pricing methodology is also an opportunity that could be explored by a newly-created Affordability Board.” PIPC has significant concerns that the QALY methodology is discriminatory, and shares the National Council on Disability’s opposition to using QALYs and referencing international prices that use QALYs. Click here to view the Colorado report. Click here to view our concerns about ICER and here to learn about QALYs. Click here for additional information about international care access challenges.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics
California’s Administration will propose to establish a single market for drug pricing within the state for all purchasers—Medi-Cal, California Public Employees’ Retirement System, Covered California, private insurers, self-insured employers, and others— in which California would invoke a most-favored-nation clause requiring manufacturers to offer prices at or below the price offered to "any other state, nation, or global purchaser.” In doing so, California would be referencing prices in other countries that use quality-adjusted life years (QALYs) and similar metrics to determine the cost effectiveness and coverage of drugs. As stated by the National Council on Disability, "In this report, NCD found sufficient evidence of the discriminatory effects of QALYs to warrant concern, including concerns raised by bioethicists, patient rights groups, and disability rights advocates about the limited access to lifesaving medications for chronic illnesses in countries where QALYs are frequently used. In addition, QALY-based programs have been found to violate the Americans with Disabilities Act.” Click here to view the California plan. Click here to view the NCD report calling on policymakers to "refrain from pursuing means of reducing Medicare and Medicaid prescription drug costs that attempt to model US pricing after the pricing in other countries, which may heavily rely on QALYs and often deny people with disabilities access to needed care.”
4. An Independent Federal Agency Recognizes the Danger of QALYs
PIPC published a new Data Mine blog post exploring the recent report from the National Council on Disability that finds that QALYs are discriminatory and should not be used to make coverage decisions. From the blog post: "Unfortunately, QALY-based analyses are already on our shores. While Medicare does not currently use a QALY-based analysis to inform coverage and reimbursement decisions, plenty of private insurers and states do. In light of this, NCD recommended that insurance programs jointly run by the Federal Government and the States, such as Medicaid, should not rely on cost- effectiveness research or reports that gather input from the public on health preferences that do not include the input of people with disabilities and chronic illnesses." Click here to read the blog post.
5. Headache Migraine Policy Forum and Migraine.com Event Highlighting the Patient Voice on Migraine
Join Migraine.com for a Facebook Live event this Wednesday, January 22 in partnership with Headache Migraine Policy Forum. This event is taking place the day before ICER's last public meeting before they issue their economic assessment on the value of two classes of medications for the treatment of migraine attacks. The patient voice plays a limited role during the ICER meeting. This event is an opportunity have a patient-centered discussion surrounding access and insurance coverage for new migraine rescue medications. Join the event here. For more information on ICER and how their final review could impact YOUR ability to obtain and pay for these new medications, click here to read Katie Golden's article.
6. New Survey for Sickle Cell Patients and Caregivers
Sick Cells, the Sickle Cell Disease Association of America (SCDAA) and a multi-disciplinary task force are working with ICER to inform the evaluation of the clinical and economic impact of new treatments for SCD. We are asking patients and caregivers to complete the “My Life with Sickle Cell Disease” survey that will be live on Thursday, January 16th. The results of the survey will impact the ICER review in several ways:
There are important areas of ICER’s report that may lack data, so completing the survey can help inform these critical pieces of the report. Survey closes on January 31st. Click here to take the survey.
7. Upcoming Sickle Cell Disease Webinar: Patient Group Interactions with ICER
Please join the second webinar in our series on ICER’s assessment of treatments for Sickle Cell Disease, Patient Group Interactions with ICER: Updates and Lessons Learned. The webinar will be hosted by leading Sickle Cell Disease groups in partnership with the Partnership to Improve Patient Care. We welcome interested stakeholders, patients, advocates, caregivers and families to join a webinar about the progress of the ICER assessment to-date. You will hear updates from patient stakeholders on engagement with ICER up to this point along with next steps leading up to the ICER in-person meeting. ICER’s draft evidence report on Sickle Cell Disease will be released on January 22, and the webinar will review the contents of the report and provide guidance and information for advocates who may want to provide comments on the report. The webinar will be hosted on January 27, 2020 at 4:30pm EST. Please RSVP to [email protected].
8. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director
With PCORI recently reauthorized for ten years, Dr. Nakela Cook will begin as PCORI's Executive Director in mid-April. Friends of PCORI Reauthorization co-chair and PIPC Chairman the Honorable Tony Coelho said “I want to congratulate Dr. Nakela Cook on being selected to serve as PCORI’s next Executive Director. With a newly minted 10-year vote of confidence from Congress, PCORI has a tremendous opportunity ahead to continue driving an efficient and informed health system that is truly patient-centered and responsive to the individual characteristics, needs, and priorities of patients and people with disabilities. We are excited to work with Dr. Cook in fulfilling PCORI’s statutory promise of amplifying the voices of patients and people with disabilities in determining research priorities.” Click here to read the press release.
9. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment
The Pacific Business Group on Health is calling for public comment on its Patient-Reported Outcome Measures for Oncology Care, which it is cooperatively developing with the Centers for Medicare and Medicaid Services (CMS). From PBGH: "The aims for this project are to enhance patient-centered cancer quality measurement by 1) fully developing and testing patient-reported outcome-performance measures (PRO-PMs) regarding health-related quality of life (HRQOL) and pain for patients with breast, colon and lung cancer, and 2) preparing documentation for successful submission of the measures to National Quality Forum (NQF) and CMS." Click here to read more and to comment.
10. Recap of the 10th Annual PIPC Forum
PIPC held its 10th annual PIPC Forum on December 16, 2019. The Forum featured leading patient and disability advocates and technical health policy experts discussing the topic of international reference pricing. The presenters expressed concerns about discrimination and detrimental impacts on innovation should the United States move in the direction of using international reference pricing or cost-effectiveness analyses based on the QALY to address the cost of prescription drugs. Read a complete summary and view a video of the 10th Annual PIPC Forum here.
11. 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.
12. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis
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:
13. Upcoming Events and Webinars
HMPF Advocacy Forum: ICER Acute Migraine Treatment Review
January 22, 2020
Click here for details.
PCORI Cycle 1 2020 Improving Methods Applicant Town Hall
January 22, 2020
Click here for details.
Real World Evidence and Data: A Tufts Study of 30 Pharma Companies
January 23, 2020
Click here for details.
PCORI Cycle 1 2020 Broad PFA Applicant Town Hall
January 23, 2020
Click here for details.
Patient Registries, Real World Evidence and HEOR
January 27-28, 2020
Click here for details.
PCORI Board of Governors Meeting
January 28, 2020
Click here for details.
PCORI Advisory Panel on Patient Engagement Winter 2020 Meeting
January 31, 2020
Click here for details.
PCORI Board of Governors Meeting
February 25, 2020
Click here for details.
FT US Pharma and Biotech Summit 2020
May 14, 2020
Click here for details.
14. Medical Journal Articles
Early Returns From the Era of Precision Medicine, click here to view.
Who Assigns Value in Value-Based Insurance Design?, click here to view.
Does the Institute for Clinical and Economic Review Revise Its Findings in Response to Industry Comments?, click here to view.
The Patient-Centered Outcomes Research Network Antibiotics and Childhood Growth Study: Implementing Patient Data Linkage, click here to view.
Viewpoint: Adding Patient-Reported Outcomes to Medicare's Oncology Value-Based Payment Model, click here to view.
Beyond Involvement: Multiple Methods and Purposes of Shared Decision Making, click here to view.
Behavioral Economic Insights to Improve Medication Adherence in Adults with Chronic Conditions: A Scoping Review, click here to view.
The Need for Clinical Judgement in the Application of Evidence-Based Medicine, click here to view.
Building Capacity in Evidence-Based Medicine in Low-Income and Middle-Income Countries: Problems and Potential Solutions, click here to view.
A Review and Synthesis of Frameworks for Engagement in Health Research to Identify Concepts of Knowledge User Engagement, click here to view.
15. AHRQ Effective Program Updates
Research Protocol: Cervical Ripening in the Outpatient Setting, click here to view.
Research Protocol: Treatments for Acute Episodic Migraine, click here to view.
Research Protocol: Mixed Methods Review: Integrating Palliative Care With Chronic Disease Management in Ambulatory Care, click here to view.
Online Training for SRDR+ Now Available at the Evidence Synthesis Academy, click here to read more.
Research Protocol: Treatments for Acute Pain: A Systematic Review, click here to view.
Research Report: Registries for Evaluating Patient Outcomes: A User's Guide, click here to view.
Research Protocol: Management of High-Need, High-Cost Patients: A Realist and Systematic Review, click here to view.
Systematic Review: Achieving Health Equity in Preventive Services, click here to view.
Research Protocol: Strategies for Patient, Family, and Caregiver Engagement, click here to view.
Research Report: Translation of a C. difficile Treatment Clinical Pathway Into Machine-Readable Clinical Decision Support Artifacts Prototyped for Electronic Health Record Integration, click here to view.
Research Protocol: Management of Primary Headache During Pregnancy, click here to view.
In an op-ed published in The Hill, Gunnar Esiason, a patient living with cystic fibrosis writes that patients like him should not be denied access to life-changing medication because an economic model says that their life is too expensive to save. Mr. Esiason is now taking the new cystic fibrosis drug Trikafta, which he says has changed his life. "QALY is not adequately able to quantify what happened in my own life — my journey from near end-stage illness and no hope for a future to correctly managed CF and entrance into an elite graduate program," he wrote. "I certainly would like to know why cost-effectiveness is being used against me. Would the analysts at ICER prefer I return to a state of recurrent hospitalizations, traumatic medical procedures, bouts of hemoptysis (coughing up blood), and the fast track towards end-stage illness and disability income? Frankly, I consider the talk of cost-effectiveness to be not only discriminatory but also pure ableism." Click here to read the article.
2. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage
On December 12, 2019, the Colorado Department of Health CarePolicy and Financing released a report entitled “Reducing Prescription Drug Costs in Colorado.” The report proposes to reduce prescription drug costs in Colorado, including by “monitoring new ways to price prescription drugs, including QALY pricing methodologies.” The report specifically references ICER, stating, "A nonprofit in Boston called the Institute for Clinical and Economic Review (ICER) is using a calculation that factors in a dollar amount associated with being healthy in order to estimate how a drug should be priced...some drug manufacturers have moved toward aligning with ICER’s QALY-based dollar estimate when evaluating the price of certain newer drugs...Countries like Canada, Britain, Ireland and the Netherlands have used these types of calculations to leverage drug prices with manufacturers and to determine which drugs their government-funded health programs should cover...use of cost-per-QALY reporting such as that conducted by ICER may help payers leverage bigger discounts from drug makers, determine limitations to coverage for certain drugs, or indicate preferential coverage of alternative treatments with better estimated value. QALY pricing methodology is also an opportunity that could be explored by a newly-created Affordability Board.” PIPC has significant concerns that the QALY methodology is discriminatory, and shares the National Council on Disability’s opposition to using QALYs and referencing international prices that use QALYs. Click here to view the Colorado report. Click here to view our concerns about ICER and here to learn about QALYs. Click here for additional information about international care access challenges.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics
California’s Administration will propose to establish a single market for drug pricing within the state for all purchasers—Medi-Cal, California Public Employees’ Retirement System, Covered California, private insurers, self-insured employers, and others— in which California would invoke a most-favored-nation clause requiring manufacturers to offer prices at or below the price offered to "any other state, nation, or global purchaser.” In doing so, California would be referencing prices in other countries that use quality-adjusted life years (QALYs) and similar metrics to determine the cost effectiveness and coverage of drugs. As stated by the National Council on Disability, "In this report, NCD found sufficient evidence of the discriminatory effects of QALYs to warrant concern, including concerns raised by bioethicists, patient rights groups, and disability rights advocates about the limited access to lifesaving medications for chronic illnesses in countries where QALYs are frequently used. In addition, QALY-based programs have been found to violate the Americans with Disabilities Act.” Click here to view the California plan. Click here to view the NCD report calling on policymakers to "refrain from pursuing means of reducing Medicare and Medicaid prescription drug costs that attempt to model US pricing after the pricing in other countries, which may heavily rely on QALYs and often deny people with disabilities access to needed care.”
4. An Independent Federal Agency Recognizes the Danger of QALYs
PIPC published a new Data Mine blog post exploring the recent report from the National Council on Disability that finds that QALYs are discriminatory and should not be used to make coverage decisions. From the blog post: "Unfortunately, QALY-based analyses are already on our shores. While Medicare does not currently use a QALY-based analysis to inform coverage and reimbursement decisions, plenty of private insurers and states do. In light of this, NCD recommended that insurance programs jointly run by the Federal Government and the States, such as Medicaid, should not rely on cost- effectiveness research or reports that gather input from the public on health preferences that do not include the input of people with disabilities and chronic illnesses." Click here to read the blog post.
5. Headache Migraine Policy Forum and Migraine.com Event Highlighting the Patient Voice on Migraine
Join Migraine.com for a Facebook Live event this Wednesday, January 22 in partnership with Headache Migraine Policy Forum. This event is taking place the day before ICER's last public meeting before they issue their economic assessment on the value of two classes of medications for the treatment of migraine attacks. The patient voice plays a limited role during the ICER meeting. This event is an opportunity have a patient-centered discussion surrounding access and insurance coverage for new migraine rescue medications. Join the event here. For more information on ICER and how their final review could impact YOUR ability to obtain and pay for these new medications, click here to read Katie Golden's article.
6. New Survey for Sickle Cell Patients and Caregivers
Sick Cells, the Sickle Cell Disease Association of America (SCDAA) and a multi-disciplinary task force are working with ICER to inform the evaluation of the clinical and economic impact of new treatments for SCD. We are asking patients and caregivers to complete the “My Life with Sickle Cell Disease” survey that will be live on Thursday, January 16th. The results of the survey will impact the ICER review in several ways:
- It will allow ICER to more accurately measure the impact SCD has on day-to-day activities.
- It will give caregivers a voice, which is often missing from clinical trial data.
- It will help ICER put a price tag on some of the expenses that result from SCD. Specifically, the survey will capture information about out-of-pocket costs and how much is spent out of cash or bank accounts to help manage SCD.
There are important areas of ICER’s report that may lack data, so completing the survey can help inform these critical pieces of the report. Survey closes on January 31st. Click here to take the survey.
7. Upcoming Sickle Cell Disease Webinar: Patient Group Interactions with ICER
Please join the second webinar in our series on ICER’s assessment of treatments for Sickle Cell Disease, Patient Group Interactions with ICER: Updates and Lessons Learned. The webinar will be hosted by leading Sickle Cell Disease groups in partnership with the Partnership to Improve Patient Care. We welcome interested stakeholders, patients, advocates, caregivers and families to join a webinar about the progress of the ICER assessment to-date. You will hear updates from patient stakeholders on engagement with ICER up to this point along with next steps leading up to the ICER in-person meeting. ICER’s draft evidence report on Sickle Cell Disease will be released on January 22, and the webinar will review the contents of the report and provide guidance and information for advocates who may want to provide comments on the report. The webinar will be hosted on January 27, 2020 at 4:30pm EST. Please RSVP to [email protected].
8. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director
With PCORI recently reauthorized for ten years, Dr. Nakela Cook will begin as PCORI's Executive Director in mid-April. Friends of PCORI Reauthorization co-chair and PIPC Chairman the Honorable Tony Coelho said “I want to congratulate Dr. Nakela Cook on being selected to serve as PCORI’s next Executive Director. With a newly minted 10-year vote of confidence from Congress, PCORI has a tremendous opportunity ahead to continue driving an efficient and informed health system that is truly patient-centered and responsive to the individual characteristics, needs, and priorities of patients and people with disabilities. We are excited to work with Dr. Cook in fulfilling PCORI’s statutory promise of amplifying the voices of patients and people with disabilities in determining research priorities.” Click here to read the press release.
9. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment
The Pacific Business Group on Health is calling for public comment on its Patient-Reported Outcome Measures for Oncology Care, which it is cooperatively developing with the Centers for Medicare and Medicaid Services (CMS). From PBGH: "The aims for this project are to enhance patient-centered cancer quality measurement by 1) fully developing and testing patient-reported outcome-performance measures (PRO-PMs) regarding health-related quality of life (HRQOL) and pain for patients with breast, colon and lung cancer, and 2) preparing documentation for successful submission of the measures to National Quality Forum (NQF) and CMS." Click here to read more and to comment.
10. Recap of the 10th Annual PIPC Forum
PIPC held its 10th annual PIPC Forum on December 16, 2019. The Forum featured leading patient and disability advocates and technical health policy experts discussing the topic of international reference pricing. The presenters expressed concerns about discrimination and detrimental impacts on innovation should the United States move in the direction of using international reference pricing or cost-effectiveness analyses based on the QALY to address the cost of prescription drugs. Read a complete summary and view a video of the 10th Annual PIPC Forum here.
11. 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.
- Australia: Family fights for access to a spinal muscular atrophy gene therapy as Australia delays approval. Government refuses to fund "revolutionary" migraine medications.
- Canada: As British Columbia expands coverage of a spinal muscular atrophy drug, one teen is left out as he is slightly too old to qualify. "Being deprived of care when a drug exists is even more traumatic than the announcement of the diagnosis!"
- New Zealand: As Pharmac denies coverage of a cancer drug, one patient dies trying to self-fund it. Parents whose daughter has cystic fibrosis tow a coffin to the capital in a call for better medicine funding.
12. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis
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:
- Ulcerative Colitis: Research Protocol available. 2/3/2020: Model Analysis Plan.
- Cystic Fibrosis: Model Analysis Plan available. 2/20/2020: Draft Evidence Report and Draft Voting Questions. Meeting 4/30/2020: CTAF will convene to deliberate and vote on evidence presented in ICER's report on treatments for cystic fibrosis.
- Sickle Cell Disease: Model Analysis Plan available. 1/22/2020: Draft Evidence Report and Draft Voting Questions. Meeting 3/26/2020: New England CEPAC will convene to deliberate and vote on evidence presented in ICER's report on treatments for sickle cell disease.
- Acute Migraine: Revised Voting Questions, Evidence Report, and Responses to Public Comments AVAILABLE. Meeting 1/23/2020: Midwest CEPAC to review ICER's assessment of acute migraine treatments.
- 2020 Value Assessment Framework: 1/31/2020: Final Framework Adaptations.
- Non-Alcoholic Steatohepatitis: Research Protocol available. 2/5/2020: Model analysis plan.
- Beta Thalassemia: Draft Scoping Document AVAILABLE, comment period OPEN through 1/27/2020
- Hemophilia A: Open Input Period through 1/22/2020. 1/24/2020: Draft Scoping Document.
13. Upcoming Events and Webinars
HMPF Advocacy Forum: ICER Acute Migraine Treatment Review
January 22, 2020
Click here for details.
PCORI Cycle 1 2020 Improving Methods Applicant Town Hall
January 22, 2020
Click here for details.
Real World Evidence and Data: A Tufts Study of 30 Pharma Companies
January 23, 2020
Click here for details.
PCORI Cycle 1 2020 Broad PFA Applicant Town Hall
January 23, 2020
Click here for details.
Patient Registries, Real World Evidence and HEOR
January 27-28, 2020
Click here for details.
PCORI Board of Governors Meeting
January 28, 2020
Click here for details.
PCORI Advisory Panel on Patient Engagement Winter 2020 Meeting
January 31, 2020
Click here for details.
PCORI Board of Governors Meeting
February 25, 2020
Click here for details.
FT US Pharma and Biotech Summit 2020
May 14, 2020
Click here for details.
14. Medical Journal Articles
Early Returns From the Era of Precision Medicine, click here to view.
Who Assigns Value in Value-Based Insurance Design?, click here to view.
Does the Institute for Clinical and Economic Review Revise Its Findings in Response to Industry Comments?, click here to view.
The Patient-Centered Outcomes Research Network Antibiotics and Childhood Growth Study: Implementing Patient Data Linkage, click here to view.
Viewpoint: Adding Patient-Reported Outcomes to Medicare's Oncology Value-Based Payment Model, click here to view.
Beyond Involvement: Multiple Methods and Purposes of Shared Decision Making, click here to view.
Behavioral Economic Insights to Improve Medication Adherence in Adults with Chronic Conditions: A Scoping Review, click here to view.
The Need for Clinical Judgement in the Application of Evidence-Based Medicine, click here to view.
Building Capacity in Evidence-Based Medicine in Low-Income and Middle-Income Countries: Problems and Potential Solutions, click here to view.
A Review and Synthesis of Frameworks for Engagement in Health Research to Identify Concepts of Knowledge User Engagement, click here to view.
15. AHRQ Effective Program Updates
Research Protocol: Cervical Ripening in the Outpatient Setting, click here to view.
Research Protocol: Treatments for Acute Episodic Migraine, click here to view.
Research Protocol: Mixed Methods Review: Integrating Palliative Care With Chronic Disease Management in Ambulatory Care, click here to view.
Online Training for SRDR+ Now Available at the Evidence Synthesis Academy, click here to read more.
Research Protocol: Treatments for Acute Pain: A Systematic Review, click here to view.
Research Report: Registries for Evaluating Patient Outcomes: A User's Guide, click here to view.
Research Protocol: Management of High-Need, High-Cost Patients: A Realist and Systematic Review, click here to view.
Systematic Review: Achieving Health Equity in Preventive Services, click here to view.
Research Protocol: Strategies for Patient, Family, and Caregiver Engagement, click here to view.
Research Report: Translation of a C. difficile Treatment Clinical Pathway Into Machine-Readable Clinical Decision Support Artifacts Prototyped for Electronic Health Record Integration, click here to view.
Research Protocol: Management of Primary Headache During Pregnancy, click here to view.
