In This Week’s Issue:
1. Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) Funding Opportunity: Measure Development for the Quality Payment Program, click here to apply.
2. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources, click here for details.
3. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare, see details below.
4. Bloomberg: The Doctors Who Hate Insurance So Much They Go Without It, click here to read the article.
5. PAF Partners with National Prostate Cancer Groups to Conduct Survey of Patient Preferences, Values, and Experiences, click here to read the survey.
6. MS Groups Working to Advance Patient-Reported Outcomes in Research, Patient Care and Treatment Development, click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
8. Upcoming Events and Webinars, see details below.
9.Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) Funding Opportunity: Measure Development for the Quality Payment Program, click here to apply.
2. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources, click here for details.
3. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare, see details below.
4. Bloomberg: The Doctors Who Hate Insurance So Much They Go Without It, click here to read the article.
5. PAF Partners with National Prostate Cancer Groups to Conduct Survey of Patient Preferences, Values, and Experiences, click here to read the survey.
6. MS Groups Working to Advance Patient-Reported Outcomes in Research, Patient Care and Treatment Development, click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
8. Upcoming Events and Webinars, see details below.
9.Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) Funding Opportunity: Measure Development for the Quality Payment Program
The Centers for Medicare and Medicaid (CMS) has extended the deadline for application for the “Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) Funding Opportunity: Measure Development for the Quality Payment Program” to June 5, 2018 at 3:00 pm ET.
“The purpose of this Funding Opportunity is to provide funding assistance in the form of cooperative agreements to entities to develop, improve, update, or expand quality measures for use in the Quality Payment Program. Recognizing the benefits of measure development by external stakeholders with specific knowledge of clinician and patient perspectives and needs, the funding assistance of these cooperative agreements is specifically designated for entities external both to CMS and to other federal agencies. Such entities may include, but are not limited to, clinical specialty societies, clinical professional organizations, patient advocacy organizations, educational institutions, independent research organizations, health systems, and other entities engaged in quality measure development. These external entities provide the needed medical specialty and patient perspectives to lead or support the measure development priorities of the CMS Quality Measure Development Plan and, accordingly, to advance the Quality Payment Program measure portfolio. Specifically, collaboration with and support for these entities in measure development will assist CMS in addressing such essential topics as: clinician engagement, consumer-informed decisions, critical measure gaps, quality measure alignment, and efficient data collection that minimizes health care provider burden.” Click here to apply.
2. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources
AHRQ is seeking feedback from researchers, clinicians, policymakers, consumers, and others on its comprehensive Web-based Library of Patient-Centered Outcomes Research (PCOR) resources. “Feedback will be used to assess and potentially revise the layout, design, and content of the library of resources. The library, developed through investments by public, private, nonprofit, and academic organizations, includes PCOR findings and evidence-based tools that have appeared in the published literature, as well as studies and projects in progress. As outlined in a recent Federal Register notice, AHRQ seeks input on how well the library of PCOR resources and its materials meet the needs of users.” Click here for details. Deadline: June 29, 2018.
3. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare
PIPC Executive Director Sara van Geertruyden highlighted the consequences of using quality-adjusted life years for patients with disabilities or long-term health conditions at ISPOR's 23rd Annual International Meeting. “Sara Traigle van Geertruyden, JD, the executive director of the Partnership to Improve Patient Care (PIPC), highlighted 1 of the reasons why ICER assessments may not be cited as frequently as might be expected. According to van Geertruyden, assessments that rely on quality-adjusted life years (QALYs) have raised significant ethical questions because they can lead to discrimination against people who have disabilities or long-term health conditions. These patients, says van Geertruyden, will never achieve a state of ‘perfect’ health as assessed by a QALY.” Click here to read the article.
On the closing day of ISPOR’s meeting, van Geertruyden also discussed the role of value assessments in a healthcare landscape that is increasingly focused on the use of precision medicine in treating disease. “’What it boils down to is culture,’ said van Geertruyden. The current culture in the United States, she said, is structured upon a fail-first approach and on limiting access to new, expensive treatments. A cultural transition should focus on building evidence to know which treatments work for which patients, and when. Such an approach would help to save on costs by preventing adverse events or nonresponse to treatment. One key to achieving this new reality is to invest in real-world evidence earlier, so that payers have more information to work from.” Click here to read the article.
4. Bloomberg: The Doctors Who Hate Insurance So Much They Go Without It
Emma Ockerman reports that some health care professionals willingly pass on their own health insurance coverage in an article for Bloomberg. “’You would think that these are educated folks who understand they're limited in their ability to predict what kind of health events might happen to them down the road,’ said Sabrina Corlette, research professor at the Georgetown University Health Policy Institute. ‘On the other hand, there's certainly a tipping point when premiums keep rising.’ But for Brad Why, a psychiatric nurse practitioner in Hockessin, Delaware, cost wasn't the main issue. He canceled his family's plan this year after developing a ‘pretty significant disrespect’ for insurance companies. They're ‘dictating who is getting what, how much they're getting, putting limits on the care that you receive and the medication that can be prescribed,’ said Why, 49. ‘I just don't want to pay them anymore.’” Click here to read the article.
5. PAF Partners with National Prostate Cancer Groups to Conduct Survey of Patient Preferences, Values, and Experiences
The Patient Advocacy Foundation has released a joint survey project with four prostate cancer nonprofit organizations that highlights the prostate cancer patient experience. “The updated survey tool included several questions from the original value series and new questions around goals associated with cancer treatment, cancer education, impact of side effects on Quality of Life, and several opened ended questions around treatment impact measures and side effect impact measures. The updated survey captured the experiences and challenges patients encounter to assist non-profit organizations in expressing those concepts to decision-makers and the medical community. By expanding the dissemination of the survey and increasing the number of organizations contributing to its design, the groups partnered to more fully understand and represent the patient’s experience with prostate cancer and its related care, costs, and issues.” Click here to read the survey.
6. MS Groups Working to Advance Patient-Reported Outcomes in Research, Patient Care and Treatment Development
In an article for Multiple Sclerosis News Today, Carolina Henriques reports that two groups working on patient-reported outcomes for multiple sclerosis will jointly explore ways to “standardize and harmonize” these measures so as to make them more effective. “The effort brings the iConquerMS People-Powered Research Network, managed by the nonprofit Accelerate Cure Project for MS, together with the Italian Multiple Sclerosis Society, which opened the PROMOPRO-MS database in 2013...Through appropriate standardization of PRO measures, their goal is to incorporate the patient voice in MS research, care, and drug development.” Click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register.
8. Upcoming Events and Webinars
Advisory Panel on Rare Disease Spring 2018 Meeting
June 6, 2018
Click here for details
Risk-Adjustment in Quality Measurement: How and Why to Use It
June 6, 2018
Click here for details
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
Overcoming Inequities in the Treatment of Mental Illness: The Role of Patient-Centered Research
June 13, 2018
Click here for details
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
NPC @ AcademyHealth 2018 Annual Research Meeting
June 24-26, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
NPC @ MedCity CONVERGE
July 11-12, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
9. Medical Journal Articles
Multi-Stakeholder Engagement in Health Services Research, click here to view.
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
10. AHRQ Effective Program Updates
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, 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.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
The Centers for Medicare and Medicaid (CMS) has extended the deadline for application for the “Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) Funding Opportunity: Measure Development for the Quality Payment Program” to June 5, 2018 at 3:00 pm ET.
“The purpose of this Funding Opportunity is to provide funding assistance in the form of cooperative agreements to entities to develop, improve, update, or expand quality measures for use in the Quality Payment Program. Recognizing the benefits of measure development by external stakeholders with specific knowledge of clinician and patient perspectives and needs, the funding assistance of these cooperative agreements is specifically designated for entities external both to CMS and to other federal agencies. Such entities may include, but are not limited to, clinical specialty societies, clinical professional organizations, patient advocacy organizations, educational institutions, independent research organizations, health systems, and other entities engaged in quality measure development. These external entities provide the needed medical specialty and patient perspectives to lead or support the measure development priorities of the CMS Quality Measure Development Plan and, accordingly, to advance the Quality Payment Program measure portfolio. Specifically, collaboration with and support for these entities in measure development will assist CMS in addressing such essential topics as: clinician engagement, consumer-informed decisions, critical measure gaps, quality measure alignment, and efficient data collection that minimizes health care provider burden.” Click here to apply.
2. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources
AHRQ is seeking feedback from researchers, clinicians, policymakers, consumers, and others on its comprehensive Web-based Library of Patient-Centered Outcomes Research (PCOR) resources. “Feedback will be used to assess and potentially revise the layout, design, and content of the library of resources. The library, developed through investments by public, private, nonprofit, and academic organizations, includes PCOR findings and evidence-based tools that have appeared in the published literature, as well as studies and projects in progress. As outlined in a recent Federal Register notice, AHRQ seeks input on how well the library of PCOR resources and its materials meet the needs of users.” Click here for details. Deadline: June 29, 2018.
3. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare
PIPC Executive Director Sara van Geertruyden highlighted the consequences of using quality-adjusted life years for patients with disabilities or long-term health conditions at ISPOR's 23rd Annual International Meeting. “Sara Traigle van Geertruyden, JD, the executive director of the Partnership to Improve Patient Care (PIPC), highlighted 1 of the reasons why ICER assessments may not be cited as frequently as might be expected. According to van Geertruyden, assessments that rely on quality-adjusted life years (QALYs) have raised significant ethical questions because they can lead to discrimination against people who have disabilities or long-term health conditions. These patients, says van Geertruyden, will never achieve a state of ‘perfect’ health as assessed by a QALY.” Click here to read the article.
On the closing day of ISPOR’s meeting, van Geertruyden also discussed the role of value assessments in a healthcare landscape that is increasingly focused on the use of precision medicine in treating disease. “’What it boils down to is culture,’ said van Geertruyden. The current culture in the United States, she said, is structured upon a fail-first approach and on limiting access to new, expensive treatments. A cultural transition should focus on building evidence to know which treatments work for which patients, and when. Such an approach would help to save on costs by preventing adverse events or nonresponse to treatment. One key to achieving this new reality is to invest in real-world evidence earlier, so that payers have more information to work from.” Click here to read the article.
4. Bloomberg: The Doctors Who Hate Insurance So Much They Go Without It
Emma Ockerman reports that some health care professionals willingly pass on their own health insurance coverage in an article for Bloomberg. “’You would think that these are educated folks who understand they're limited in their ability to predict what kind of health events might happen to them down the road,’ said Sabrina Corlette, research professor at the Georgetown University Health Policy Institute. ‘On the other hand, there's certainly a tipping point when premiums keep rising.’ But for Brad Why, a psychiatric nurse practitioner in Hockessin, Delaware, cost wasn't the main issue. He canceled his family's plan this year after developing a ‘pretty significant disrespect’ for insurance companies. They're ‘dictating who is getting what, how much they're getting, putting limits on the care that you receive and the medication that can be prescribed,’ said Why, 49. ‘I just don't want to pay them anymore.’” Click here to read the article.
5. PAF Partners with National Prostate Cancer Groups to Conduct Survey of Patient Preferences, Values, and Experiences
The Patient Advocacy Foundation has released a joint survey project with four prostate cancer nonprofit organizations that highlights the prostate cancer patient experience. “The updated survey tool included several questions from the original value series and new questions around goals associated with cancer treatment, cancer education, impact of side effects on Quality of Life, and several opened ended questions around treatment impact measures and side effect impact measures. The updated survey captured the experiences and challenges patients encounter to assist non-profit organizations in expressing those concepts to decision-makers and the medical community. By expanding the dissemination of the survey and increasing the number of organizations contributing to its design, the groups partnered to more fully understand and represent the patient’s experience with prostate cancer and its related care, costs, and issues.” Click here to read the survey.
6. MS Groups Working to Advance Patient-Reported Outcomes in Research, Patient Care and Treatment Development
In an article for Multiple Sclerosis News Today, Carolina Henriques reports that two groups working on patient-reported outcomes for multiple sclerosis will jointly explore ways to “standardize and harmonize” these measures so as to make them more effective. “The effort brings the iConquerMS People-Powered Research Network, managed by the nonprofit Accelerate Cure Project for MS, together with the Italian Multiple Sclerosis Society, which opened the PROMOPRO-MS database in 2013...Through appropriate standardization of PRO measures, their goal is to incorporate the patient voice in MS research, care, and drug development.” Click here to read the article.
7. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register.
8. Upcoming Events and Webinars
Advisory Panel on Rare Disease Spring 2018 Meeting
June 6, 2018
Click here for details
Risk-Adjustment in Quality Measurement: How and Why to Use It
June 6, 2018
Click here for details
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
Overcoming Inequities in the Treatment of Mental Illness: The Role of Patient-Centered Research
June 13, 2018
Click here for details
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
NPC @ AcademyHealth 2018 Annual Research Meeting
June 24-26, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
NPC @ MedCity CONVERGE
July 11-12, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
9. Medical Journal Articles
Multi-Stakeholder Engagement in Health Services Research, click here to view.
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
10. AHRQ Effective Program Updates
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, 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.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
