In This Week’s Issue:
1. NHC Rubric on Capturing the Patient Voice -- Comment Opportunity, click here to see the Rubric and to comment.
2. New Medicare Primary Care Models and Their Potential for Seriously Ill Beneficiaries, click here to read the article.
3. Alliance for Health Policy Webinar on the Future of PCORI, click here to watch the webinar.
4. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
5. New NPC Resources on Value Assessment, see below for details.
6. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy 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. NHC Rubric on Capturing the Patient Voice -- Comment Opportunity, click here to see the Rubric and to comment.
2. New Medicare Primary Care Models and Their Potential for Seriously Ill Beneficiaries, click here to read the article.
3. Alliance for Health Policy Webinar on the Future of PCORI, click here to watch the webinar.
4. ICER Announces Possible 2020 Assessments, click here to see the list of possible assessments.
5. New NPC Resources on Value Assessment, see below for details.
6. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training, click here to learn more and to apply for the training.
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
8. ICER Studies: Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy 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. NHC Rubric on Capturing the Patient Voice -- Comment Opportunity
The National Health Council (NHC) recently released its Rubric to Capture the Patient Voice, a tool for the patient community and other stakeholders can use to evaluate attributes of patient-centeredness and to guide them on meaningful patient engagement. NHC is soliciting feedback from patients and other health care stakeholders. "We envision that the Rubric will be broadly useful across a range of activities, including research; medical-product development, including biopharmaceuticals, devices, and diagnostics; health care delivery and shared decision making; value assessment; real-world data analyses; evidence generation; scientific exchange and communication; and health policy. This Rubric can serve as a general blueprint in a wide range of circumstances where patient-centricity is desired," NHC writes, and solicits feedback on experiences implementing the Rubric. Click here to see the Rubric and to comment.
2. New Medicare Primary Care Models and Their Potential for Seriously Ill Beneficiaries
An article published in the Health Affairs blog explored new primary care models proposed by the Centers for Medicare and Medicaid Services and how they can assist seriously ill beneficiaries. "The PCF and DC models are important steps in moving toward alternative payment models offering integrated, person-focused care for high-need patients but also show there is more work to do. CMS must remain a committed partner to better integrate primary care and the kind of innovation offered by serious illness and palliative care. The breadth of successful pilots and ongoing discussions show how quickly this field is evolving, and CMS can help accelerate it by ensuring flexibility to make caring for this high-risk population more viable and offering the necessary support for organizations to move care out of silos and build the workforce and competencies necessary to succeed," the authors wrote. Click here to read the article.
3. Alliance for Health Policy Webinar on the Future of PCORI
A decade following the authorization of the Patient-Centered Outcomes Research Institute (PCORI), the significance and potential impact of comparative effectiveness research (CER) remains at the forefront of the health policy conversation. CER has offered an approach to evaluate the outcomes of different health care methods and identify which treatments matter most to patients. Comparative effectiveness research also has the potential to inform broader health care policy conversations on value, costs, and delivery system reform. This webinar outlined the various PCORI reauthorization bills and amendments that have been discussed by House and Senate committees to date. The Alliance for Health Policy's panel of experts explored some of the critical questions facing congressional staff and discuss potential next steps in the legislative process. Click here to watch the webinar.
4. ICER Announces Possible 2020 Assessments
The Institute for Clinical and Economic Research (ICER) published a list of possible assessments for 2020. The possible assessments include drugs to treat cystic fibrosis, breast cancer, multiple sclerosis, and HIV. ICER's QALY-based studies are not transparent, use discriminatory cost-effectiveness measures, and ignore patient preferences and input. Click here to see the list of possible assessments.
5. New NPC Resources on Value Assessment
The National Pharmaceutical Council (NPC) released three new resources on value assessments and why they cannot be one-size-fits-all. In an ACMJ op-ed, NPC's Dr. Robert Dubois calls for multiple value assessments by multiple organizations, noting that ICER alone cannot provide information to patients to inform decision-making. Click here to read the op-ed. NPC also published research showing that value assessments need to make more progress before achieving widespread use. Click here to read the article. Finally, NPC interviewed Asthma & Allergy Network CEO Tonya Winders on engaging with ICER. Click here to read the Q&A.
6. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training
Alliance for Aging Research’s Senior Patient and Family Caregiver Network (SP&FCN) is seeking advocates to participate in a research-advocacy training program designed to empower senior patients and their family caregivers to engage in patient-centered outcomes research (PCOR). The training will be held November 19-21, 2019 in Dallas, TX, and reimbursements for a hotel stay and travel expenses are available. In particular, the Alliance is looking for patients or caregivers of patients with Alzheimer’s disease, sarcopenia, atrial fibrillation, chronic pain, age-related macular degeneration, or heart valve disease. Click here to learn more and to apply for the training.
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 Studies: Acute Migraine, Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy, Peanut Allergy
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:
9. Upcoming Events and Webinars
Webinar: Real World Evidence and Data: A Tufts Study of 30 Pharma Companies
August 15, 2019
Click here for details.
PCORI Board of Governors Meeting
August 20, 2019
Click here for details.
Webinar: How Frequently Should Cancer Survivors be Screened for Disease Recurrence? Is More Always Better?
August 22, 2019
Click here for details.
Health Spending: Moving from Theory to Action
September 11, 2019
Click here for details.
PCORI Improving Methods Applicant Town Hall
September 12, 2019
Click here for details.
Advisory Panel on Rare Disease Fall 2019 Meeting
September 16, 2019
Click here for details.
IMPACCT: Real World Evidence
September 18-19, 2019
Click here for details.
2019 PCORI Annual Meeting
September 18-20, 2019
Click here for details.
FT Pharma Pricing and Value Summit 2019
September 26, 2019
Click here for details.
2019 AUCD Annual Meeting
November 17-20, 2019
Click here for details.
10. Medical Journal Articles
Evidence-Based Medicine: A Data-Driven Approach to Lean Healthcare Operations, click here to view.
Patient Registries: An Underused Resource for Medicines Evaluation: Operational Proposals for Increasing the Use of Patient Registries in Regulatory Assessments, click here to view.
Commonly Used Definitions in Real-World Studies May Underestimate the Prevalence of Renal Disease Among Nonvalvular Atrial Fibrillation Patients, click here to view.
Factors Associated with Evidence-Based Decision-Making Among Patients and Providers, click here to view.
Rethinking Bias and Truth in Evidence-Based Medicine, click here to view.
Ethical Challenges Related to Patient Involvement in Health Technology Assessment, click here to view.
Value-Based Insurance Design: Current Evidence and Future Directions, click here to view.
Novel Approaches to Value Assessment Beyond the Cost-Effectiveness Framework, click here to view.
Navigating Joint HTA, Procurement, and Fair Pricing: Evidence-Based Insights and Practical Recommendations - A Meeting Report from ISPOR Regional Conference in Warsaw, 2019, click here to view.
Health Technology Assessment as Part of a Broader Process for Priority Setting and Resource Allocation, click here to view.
11. AHRQ Effective Program Updates
AHRQ EPC Pilot Projects Summary: Improving Health Systems' Access to High Quality Evidence, click here to view.
Research Protocol: Care Interventions for People With Dementia (PWD) and Their Caregivers, click here to view.
Research Protocol: Impact of Community Health Worker Certification on Workforce and Service Delivery for Asthma and Other Selected Chronic Diseases, click here to view.
AHRQ EPC Program Helps Health Systems Use Evidence, click here to view.
Technical Brief: Pharmacological and Nonpharmacological Treatments for Post-Traumatic Stress Disorder, click here to view.
Systematic Review: Management of Infertility, click here to view.
Key Questions: Cervical Ripening in the Outpatient Setting, click here to view.
Key Questions: Radiation Therapy for Brain Metastases, click here to view.
Protocol: A Rapid Evidence Review of Retention Strategies for Medications for Addiction Treatment (MAT) in Adults with Opioid Use Disorder, click here to view.
Systematic Review: Long-Term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention, click here to view.
The National Health Council (NHC) recently released its Rubric to Capture the Patient Voice, a tool for the patient community and other stakeholders can use to evaluate attributes of patient-centeredness and to guide them on meaningful patient engagement. NHC is soliciting feedback from patients and other health care stakeholders. "We envision that the Rubric will be broadly useful across a range of activities, including research; medical-product development, including biopharmaceuticals, devices, and diagnostics; health care delivery and shared decision making; value assessment; real-world data analyses; evidence generation; scientific exchange and communication; and health policy. This Rubric can serve as a general blueprint in a wide range of circumstances where patient-centricity is desired," NHC writes, and solicits feedback on experiences implementing the Rubric. Click here to see the Rubric and to comment.
2. New Medicare Primary Care Models and Their Potential for Seriously Ill Beneficiaries
An article published in the Health Affairs blog explored new primary care models proposed by the Centers for Medicare and Medicaid Services and how they can assist seriously ill beneficiaries. "The PCF and DC models are important steps in moving toward alternative payment models offering integrated, person-focused care for high-need patients but also show there is more work to do. CMS must remain a committed partner to better integrate primary care and the kind of innovation offered by serious illness and palliative care. The breadth of successful pilots and ongoing discussions show how quickly this field is evolving, and CMS can help accelerate it by ensuring flexibility to make caring for this high-risk population more viable and offering the necessary support for organizations to move care out of silos and build the workforce and competencies necessary to succeed," the authors wrote. Click here to read the article.
3. Alliance for Health Policy Webinar on the Future of PCORI
A decade following the authorization of the Patient-Centered Outcomes Research Institute (PCORI), the significance and potential impact of comparative effectiveness research (CER) remains at the forefront of the health policy conversation. CER has offered an approach to evaluate the outcomes of different health care methods and identify which treatments matter most to patients. Comparative effectiveness research also has the potential to inform broader health care policy conversations on value, costs, and delivery system reform. This webinar outlined the various PCORI reauthorization bills and amendments that have been discussed by House and Senate committees to date. The Alliance for Health Policy's panel of experts explored some of the critical questions facing congressional staff and discuss potential next steps in the legislative process. Click here to watch the webinar.
4. ICER Announces Possible 2020 Assessments
The Institute for Clinical and Economic Research (ICER) published a list of possible assessments for 2020. The possible assessments include drugs to treat cystic fibrosis, breast cancer, multiple sclerosis, and HIV. ICER's QALY-based studies are not transparent, use discriminatory cost-effectiveness measures, and ignore patient preferences and input. Click here to see the list of possible assessments.
5. New NPC Resources on Value Assessment
The National Pharmaceutical Council (NPC) released three new resources on value assessments and why they cannot be one-size-fits-all. In an ACMJ op-ed, NPC's Dr. Robert Dubois calls for multiple value assessments by multiple organizations, noting that ICER alone cannot provide information to patients to inform decision-making. Click here to read the op-ed. NPC also published research showing that value assessments need to make more progress before achieving widespread use. Click here to read the article. Finally, NPC interviewed Asthma & Allergy Network CEO Tonya Winders on engaging with ICER. Click here to read the Q&A.
6. AAR Seeks Recruits for Annual Senior Patient and Family Caregivers Network Training
Alliance for Aging Research’s Senior Patient and Family Caregiver Network (SP&FCN) is seeking advocates to participate in a research-advocacy training program designed to empower senior patients and their family caregivers to engage in patient-centered outcomes research (PCOR). The training will be held November 19-21, 2019 in Dallas, TX, and reimbursements for a hotel stay and travel expenses are available. In particular, the Alliance is looking for patients or caregivers of patients with Alzheimer’s disease, sarcopenia, atrial fibrillation, chronic pain, age-related macular degeneration, or heart valve disease. Click here to learn more and to apply for the training.
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.
- Australia: Patients travel to U.S., spend hundreds of thousands of dollars on treatment they do not qualify for in Australia. Australians fight for treatment for blood cancer patients.
- New Zealand: Lung cancer patients fight for a review of Pharmac and better coverage of drugs. Pharmac won't fund needed treatment for infantile hypophosphotasia. Patients head to Mexico to access MS treatment.
- Canada: Patients are drawing attention to the government's lack of coverage of cystic fibrosis drugs. Lifesaving SMA drugs continue to not be covered.
- United Kingdom: Patients needing lifesaving cancer drugs may not have time to negotiate with NHS. Following patient pressure, NICE reconsidering making lifesaving Batten Disease drug available.
8. ICER Studies: Acute Migraine, Type 2 Diabetes, Arthritis, Cardiovascular Disease, Duchenne Muscular Dystrophy, Peanut Allergy
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:
- Arthritis: Model Analysis Plan available. 9/18/2019: Draft Evidence Report. Meeting 11/19/2019: CTAF to an update to its 2017 rheumatoid arthritis assessment.
- Type 2 Diabetes: Model Analysis Plan available. 9/11/2019: Draft Evidence Report. Meeting 11/14/2019: The New England CEPAC will convene to deliberate on ICER's review of oral semaglutide for the treatment of type 2 diabetes.
- Cardiovascular Disease : Draft Evidence Report and Draft Voting Questions available and OPEN for public comment through 8/20/2019. 9/26/2019 Meeting: Midwest CEPAC to deliberate and vote on ICER's report on evidence presented in ICER's report on additive CVD therapies.
- Duchenne Muscular Dystrophy: Evidence Presentation available. Meeting 7/25/2019: New England CEPAC deliberated and voted on evidence presented in ICER's report on treatments for Duchenne muscular dystrophy. 8/15/2019: Final Evidence Report and Meeting Summary.
- Unsupported Price Increase Assessment: 10/8/2019: Final Report.
- Acute Migraine: Revised Scoping Document available. 9/6/2019: Research Protocol. Meeting 1/23/2020: Midwest CEPAC to review ICER's assessment of acute migraine treatments
- Valuing A Cure Project: White Paper available 8/6/2019. Comment period open 8/6/2019-9/3/2019.
9. Upcoming Events and Webinars
Webinar: Real World Evidence and Data: A Tufts Study of 30 Pharma Companies
August 15, 2019
Click here for details.
PCORI Board of Governors Meeting
August 20, 2019
Click here for details.
Webinar: How Frequently Should Cancer Survivors be Screened for Disease Recurrence? Is More Always Better?
August 22, 2019
Click here for details.
Health Spending: Moving from Theory to Action
September 11, 2019
Click here for details.
PCORI Improving Methods Applicant Town Hall
September 12, 2019
Click here for details.
Advisory Panel on Rare Disease Fall 2019 Meeting
September 16, 2019
Click here for details.
IMPACCT: Real World Evidence
September 18-19, 2019
Click here for details.
2019 PCORI Annual Meeting
September 18-20, 2019
Click here for details.
FT Pharma Pricing and Value Summit 2019
September 26, 2019
Click here for details.
2019 AUCD Annual Meeting
November 17-20, 2019
Click here for details.
10. Medical Journal Articles
Evidence-Based Medicine: A Data-Driven Approach to Lean Healthcare Operations, click here to view.
Patient Registries: An Underused Resource for Medicines Evaluation: Operational Proposals for Increasing the Use of Patient Registries in Regulatory Assessments, click here to view.
Commonly Used Definitions in Real-World Studies May Underestimate the Prevalence of Renal Disease Among Nonvalvular Atrial Fibrillation Patients, click here to view.
Factors Associated with Evidence-Based Decision-Making Among Patients and Providers, click here to view.
Rethinking Bias and Truth in Evidence-Based Medicine, click here to view.
Ethical Challenges Related to Patient Involvement in Health Technology Assessment, click here to view.
Value-Based Insurance Design: Current Evidence and Future Directions, click here to view.
Novel Approaches to Value Assessment Beyond the Cost-Effectiveness Framework, click here to view.
Navigating Joint HTA, Procurement, and Fair Pricing: Evidence-Based Insights and Practical Recommendations - A Meeting Report from ISPOR Regional Conference in Warsaw, 2019, click here to view.
Health Technology Assessment as Part of a Broader Process for Priority Setting and Resource Allocation, click here to view.
11. AHRQ Effective Program Updates
AHRQ EPC Pilot Projects Summary: Improving Health Systems' Access to High Quality Evidence, click here to view.
Research Protocol: Care Interventions for People With Dementia (PWD) and Their Caregivers, click here to view.
Research Protocol: Impact of Community Health Worker Certification on Workforce and Service Delivery for Asthma and Other Selected Chronic Diseases, click here to view.
AHRQ EPC Program Helps Health Systems Use Evidence, click here to view.
Technical Brief: Pharmacological and Nonpharmacological Treatments for Post-Traumatic Stress Disorder, click here to view.
Systematic Review: Management of Infertility, click here to view.
Key Questions: Cervical Ripening in the Outpatient Setting, click here to view.
Key Questions: Radiation Therapy for Brain Metastases, click here to view.
Protocol: A Rapid Evidence Review of Retention Strategies for Medications for Addiction Treatment (MAT) in Adults with Opioid Use Disorder, click here to view.
Systematic Review: Long-Term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention, click here to view.
