In This Week’s Issue:
1. Health Affairs: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People, click here to read the blog.
2. 2018 PCORI Annual Meeting, see details below.
3.PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization,click here to access a recording and slides.
4. Tell Insurers: Don't Discriminate on Care, click here to view.
5. Register: PQA’s Social Determinants of Health Forum, click here to register
6. STAT: Turning the tables, people with mental illness share what they want scientists to study, click here read the article
7. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine, see details below.
8. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
9. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
10. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply.
11. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
1. Health Affairs: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People, click here to read the blog.
2. 2018 PCORI Annual Meeting, see details below.
3.PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization,click here to access a recording and slides.
4. Tell Insurers: Don't Discriminate on Care, click here to view.
5. Register: PQA’s Social Determinants of Health Forum, click here to register
6. STAT: Turning the tables, people with mental illness share what they want scientists to study, click here read the article
7. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine, see details below.
8. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
9. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
10. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply.
11. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
1. Health Affairs: Formulary Restrictions Devalue And Endanger The Lives Of Disabled People
In a post for Health Affairs Blog, Ari Ne’eman argues against CVS Health’s use of the quality-adjusted-life-years metric in determining coverage for crucial therapies. “CVS Caremark may counter that the company intends to use QALYs only to contain costs, not to discriminate. Unfortunately, the discriminatory nature of the QALY is built into its very structure. Cost-per-QALY calculations inherently privilege treatments that extend the lives of those who can be restored to perfect health, and disadvantage the many who seek life-extending treatments despite having a disability or chronic condition that is not curable. This subjective valuing of non-disabled lives over disabled lives has historically prevented the adoption of the QALY by public payers in the United States. When Oregon attempted to introduce a QALY-based rationing system in 1992, the federal government denied them permission to proceed, citing the newly passed Americans with Disabilities Act and its non-discrimination mandate. Similarly, disability rights advocates successfully secured a prohibition on the use of QALYs in Medicare in the Affordable Care Act. Though not legally barred, large-scale, systematic use of QALYs in treatment coverage decisions by private payers is also unprecedented in the United States.” Click here to read the blog.
2. 2018 PCORI Annual Meeting
The 2018 PCORI Annual Meeting will take place on Wednesday, October 31, 2018 to Friday, November 2, 2018 in Washington, DC. Among the panels, Sue Peschin will be moderating a fireside chat with former members of Congress Tony Coehlo and Dr. Phil Gingrey on Thursday, November 1 from 12-1 p.m. EST. “As part of this year's theme, ‘From Evidence to Impact: Putting What Works into Action,’ attendees will hear about results from PCORI’s comparative clinical effectiveness (CER) studies, efforts to promote essential findings, and those findings’ impacts. We will also discuss important trends in patient-centered outcomes research and connect with colleagues to share ideas for future research opportunities that will help patients and those who care for them make better-informed healthcare decisions. We are pleased to host two keynote speakers, Amy Berman, RN, Senior Program Officer, John A. Hartford Foundation, and Mark Smith, MD, founding president, California Health Care Foundation.” Click here to watch the meeting.
Additionally, PCORI Executive Director Joe Selby penned a blog previewing this week’s meeting. “...This year's meeting, ‘From Evidence to Impact: Putting What Works into Action,’ reflects our focus on the need to go beyond publishing and posting. We must ensure relevant findings from these studies make their way to patients, clinicians, and policy makers, and that they have a chance to improve patient care and outcomes...Again this year, we look forward to hosting up to 1,000 representatives of all the stakeholder groups we serve, which is unusual for meetings of this kind. Registration is free of charge. And for those who can't make it in person, we'll be live-streaming the plenary and breakout sessions.” Click here to read the blog.
3. PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization
On October 25, 2018, the Partnership to Improve Patient Care (PIPC) held an 'Advocacy 101' webinar with PCORI ambassadors and patient advocates to help explain the Institute’s pending re-authorization and offer suggestions on how stakeholders can support patient-centered research. Topics covered in the webinar include a background related to PCORI’s creation, the legislative process that we anticipate for reauthorization in 2019, and appropriate tactics for outreach to legislators to ensure they understand the personal impact that PCORI’s work has on patients and other stakeholders. Click here to access a recording and slides.
4. Tell Insurers: Don't Discriminate on Care
PIPC Chairman stated in his blog, "Health-care payers are missing a tremendous opportunity to improve the health of our nation in a uniquely American way — by making health care about the individual person, based on his or her own characteristics.” Unfortunately, in August, the pharmacy benefit manager CVS Caremark announced that they would offer new plans to employers that exclude drugs if they exceed a subjective “cost-effectiveness” threshold. CVS would rely on a deeply flawed value assessment model developed by the Institute for Clinical and Economic Review (ICER) in determining whether treatments fall below a $100,000 “cost per quality-adjusted-life-year” limit. This type of cost effectiveness analysis discriminates against people with disabilities and other vulnerable groups like the elderly because it assigns higher value to people in “perfect health” than people in less-than-perfect health. Policy decisions based on cost-effectiveness ignore important differences among patients and instead rely on a single, one-size-fits-all assessment. Further, cost-effectiveness analysis discriminates against the chronically ill, the elderly and people with disabilities, using algorithms that calculate their lives as 'worth less' than people who are younger or non-disabled. Join PIPC in demanding that insurers and others stop relying on discriminatory cost-effectiveness thresholds to drive care decisions. Click here to learn more.
5. Register: PQA’s Social Determinants of Health Forum
The Pharmacy Quality Alliance (PQA) is hosting the “Social Determinants of Health Forum: Exploring Medication Access and Quality” November 14-15 in Alexandria, Va. “Healthcare improvement initiatives have focused largely on health system factors. There is growing recognition that improving access to care and patient health, including access to medications, requires focus on social, economic and environmental factors. To help forum participants identify opportunities to improve medication access, PQA will unveil a conceptual framework describing the medication access patient journey and its implications for quality measurement. The forum also will explore the ROI of new care delivery models, discuss the role of healthcare providers, including pharmacists, and the utility of new data ecosystems in these models. PQA invites senior healthcare decision-makers to attend this interactive forum, as consensus and collaboration are needed to address unmet social needs and their impact on medication access and healthcare quality. There is no charge to attend, but individuals must register in advance. Please limit 2-3 representatives per organization.” Click here to register
6. STAT: Turning the tables, people with mental illness share what they want scientists to study
In an article for STAT News, the Milken Institute and Depression and Bipolar Support Alliance (DBSA) have been emphasizing the patient perspective in their survey of patients with depression or bipolar disorder. Patients are usually the subject of scientific studies, not the designers. But a new effort is trying to bring patients’ priorities to the forefront in research on mental health. For months, the Milken Institute and the Depression and Bipolar Support Alliance have been collecting the perspectives of patients with depression or bipolar disorder. The first-of-its-kind survey poses a question patients don’t often get asked: What questions about your health and experience with depression or bipolar disorder would you most like research to help you answer?The responses have poured in. Since launching the survey in August, more than 5,600 people have taken part. “The hardest thing I’ve gone through with my med team is the trial and error of medications,” one respondent wrote. “I’ve felt like a guinea pig for years. It would be nice to have only had to go through one med and had it work.” Click here read the article.
7. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine
The Personalized Medicine Coalition (PMC) is seeking patients, patient advocates, caregivers, health care professionals and academic researchers to participate in a series of webinar discussions to inform a patient-centered research agenda for personalized medicine. Personalized medicine is an evolving approach to health care based on the latest science where physicians use diagnostic tests to determine which medical treatments will work best for each patient. By combining the information from those tests with an individual’s medical history, circumstances and values, health care providers can develop tailored treatment and prevention plans. These webinar discussions will develop principles for how to better align priority patient outcomes with personalized medicine treatment strategies and outcomes research. Contact David Davenport if you are interested in participating.
8. DBSA Meeting: Patient Focused Drug Development Meeting
As a part of the Depression and Bipolar Support Alliance’s (DBSA) “Well Beyond Blue” campaign, DBSA will be hosting a meeting with the Food and Drug Administration (FDA) that focuses on patient-focused drug development. “Putting wellness within every individual’s reach is at the core of the DBSA mission, strategies, and programs. Key to that mission is educating decision-makers who conduct research, and make public health policy on wellness. That’s why we are hosting a meeting in the Washington, D.C. metro area on November 16, 2018 with the U.S. Food and Drug Administration (FDA) and drug and medical device manufacturers. This meeting will empower people living with depression and/or bipolar to share personal views on aspects of wellness that go beyond mere symptom reduction, as well as, name wellness strategies that work best for them. But we can’t do it without you. Our collective voices are needed in-person at this meeting which will be held in Silver Spring, MD. We intentionally scheduled the meeting to begin at 12:30 p.m., enabling people who live within driving distance to attend.” Click here to register.
9. Mental Health America: 2019 Call for Proposals is Now Open
Mental Health America is now accepting workshop proposals for its 2019 Annual Conference Dueling Mental Health and Chronic Conditions in Children and Adults. “There is a lack of uniformity across the health spectrum in how illnesses are categorized and deemed as chronic diseases and chronic conditions. Not only does this create confusion, but it may lead professionals across the spectrum to focus on specific illnesses and disregard other aspects of the person being treated, including co-occurring issues like mental health conditions and broader societal conditions such as poverty, trauma, and racism. To effectively treat an individual, we must look at the whole person, which means examining the connections that exist between traditional chronic physical conditions and mental health concerns. At MHA’s Annual Conference, we will offer a traditional mixture of keynote speakers, plenary discussions and workshop panels.” Click here for details. Deadline: November 30, 2018.
10. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures
The Centers for Medicare and Medicaid (CMS) are seeking nominations for a technical expert panel (TEP) examining CMS quality and efficiency measures. Health Services Advisory Group (HSAG) is seeking a TEP of approximately 15 to 20 individuals with the following perspectives and areas of expertise:
11. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder
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:
Prostate Cancer: Final Evidence Report 10/4/18
Amyloidosis: Final Report 10/4/18
Hereditary Angiodema: Public Meeting 10/25/18
Opioid Use Disorder: Draft Evidence Report 9/5/2018 with comment period through 10/4/2018
Asthma: Draft Voting Questions and Evidence Report 9/24/2018 with comments through 10/22/2018
Atherosclerotic Cardiovascular Disease: Draft Scoping Document 8/30/2018, comments open through 12/17/18
Spinal Muscular Atrophy: Revised Scoping Document Published 9/19/18
12. Upcoming Events and Webinars
Advisory Panel on Patient Engagement Fall 2018 Meeting
October 30, 2018
Click here for details.
Facebook Live: Does Telehealth Improve Outcomes for Patients with Serious Mental Illness?
November 1, 2018
Click here for details.
2018 PCORI Annual Meeting Breakout Session: A Congressional Perspective on Patient-Centered Outcomes Research
November 1, 2018
Click here for details.
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
14th Annual Personalized Medicine Conference: Preparing for the New Possible
November 14-15, 2018
Click here for details.
PQA Social Determinants of Health Forum: Exploring Medication Access and Quality
November 14-15, 2018
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Fall 2018 Meeting
November 15, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
PCORI Board of Governors Meeting
December 11, 2018
Click here for details.
Advisory Panel on Rare Disease Winter 2018 Meeting
December 14, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
13. Medical Journal Articles
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research- A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Unique Review Criteria and Patient and Stakeholder Reviewers- Analysis of PCORI's Approach to Research Funding, click here to view.
Patient Centered Research to Improve Community Involvement (PaRTICIpate) in Diabetes Self-Management: A Conference Series for Developing Collaborations Between Researchers, Stakeholders, and Patients, click here to view.
Synthesising Conceptual Frameworks for Patient and Public Involvement in Research – A Critical Appraisal of a Meta-Narrative Review, click here to view.
Go Slow to Go Fast: Successful Engagement Strategies for Patient-Centered, Multi-Site Research, Involving Academic and Community-Based Organizations, click hereto view.
Unique Review Criteria and Patient and Stakeholder Reviewers: Analysis of PCORI's Approach to Research Funding, click here to view.
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research: A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Patient-Engaged Research: Choosing the "Right" Patients to Avoid Pitfalls, click here to view.
Engaging Patients in Health Care Epidemiology Research: A Case Example, click here to view.
A Beginning to Principles of Ethical and Regulatory Oversight of Patient-Centered Research, click here to view.
Oversight of Patient-Centered Outcomes Research: Recommendations From a Delphi Panel, click here to view.
Key Issues and Potential Solutions for Understanding Healthcare Preference Heterogeneity Free from Patient-Level Scale Confounds, click here to view.
Applying a Community-Based Participatory Research Framework to Patient and Family Engagement in the Development of Patient-Centered Outcomes Research and Practice, click here to view.
The Community and Patient Partnered Research Network (CPPRN): Application of Patient-Centered Outcomes Research to Promote Behavioral Health Equity, click here to view.
14. AHRQ Effective Program Updates
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
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.
In a post for Health Affairs Blog, Ari Ne’eman argues against CVS Health’s use of the quality-adjusted-life-years metric in determining coverage for crucial therapies. “CVS Caremark may counter that the company intends to use QALYs only to contain costs, not to discriminate. Unfortunately, the discriminatory nature of the QALY is built into its very structure. Cost-per-QALY calculations inherently privilege treatments that extend the lives of those who can be restored to perfect health, and disadvantage the many who seek life-extending treatments despite having a disability or chronic condition that is not curable. This subjective valuing of non-disabled lives over disabled lives has historically prevented the adoption of the QALY by public payers in the United States. When Oregon attempted to introduce a QALY-based rationing system in 1992, the federal government denied them permission to proceed, citing the newly passed Americans with Disabilities Act and its non-discrimination mandate. Similarly, disability rights advocates successfully secured a prohibition on the use of QALYs in Medicare in the Affordable Care Act. Though not legally barred, large-scale, systematic use of QALYs in treatment coverage decisions by private payers is also unprecedented in the United States.” Click here to read the blog.
2. 2018 PCORI Annual Meeting
The 2018 PCORI Annual Meeting will take place on Wednesday, October 31, 2018 to Friday, November 2, 2018 in Washington, DC. Among the panels, Sue Peschin will be moderating a fireside chat with former members of Congress Tony Coehlo and Dr. Phil Gingrey on Thursday, November 1 from 12-1 p.m. EST. “As part of this year's theme, ‘From Evidence to Impact: Putting What Works into Action,’ attendees will hear about results from PCORI’s comparative clinical effectiveness (CER) studies, efforts to promote essential findings, and those findings’ impacts. We will also discuss important trends in patient-centered outcomes research and connect with colleagues to share ideas for future research opportunities that will help patients and those who care for them make better-informed healthcare decisions. We are pleased to host two keynote speakers, Amy Berman, RN, Senior Program Officer, John A. Hartford Foundation, and Mark Smith, MD, founding president, California Health Care Foundation.” Click here to watch the meeting.
Additionally, PCORI Executive Director Joe Selby penned a blog previewing this week’s meeting. “...This year's meeting, ‘From Evidence to Impact: Putting What Works into Action,’ reflects our focus on the need to go beyond publishing and posting. We must ensure relevant findings from these studies make their way to patients, clinicians, and policy makers, and that they have a chance to improve patient care and outcomes...Again this year, we look forward to hosting up to 1,000 representatives of all the stakeholder groups we serve, which is unusual for meetings of this kind. Registration is free of charge. And for those who can't make it in person, we'll be live-streaming the plenary and breakout sessions.” Click here to read the blog.
3. PCORI Advocacy Webinar: The Politics and Policy of PCORI Reauthorization
On October 25, 2018, the Partnership to Improve Patient Care (PIPC) held an 'Advocacy 101' webinar with PCORI ambassadors and patient advocates to help explain the Institute’s pending re-authorization and offer suggestions on how stakeholders can support patient-centered research. Topics covered in the webinar include a background related to PCORI’s creation, the legislative process that we anticipate for reauthorization in 2019, and appropriate tactics for outreach to legislators to ensure they understand the personal impact that PCORI’s work has on patients and other stakeholders. Click here to access a recording and slides.
4. Tell Insurers: Don't Discriminate on Care
PIPC Chairman stated in his blog, "Health-care payers are missing a tremendous opportunity to improve the health of our nation in a uniquely American way — by making health care about the individual person, based on his or her own characteristics.” Unfortunately, in August, the pharmacy benefit manager CVS Caremark announced that they would offer new plans to employers that exclude drugs if they exceed a subjective “cost-effectiveness” threshold. CVS would rely on a deeply flawed value assessment model developed by the Institute for Clinical and Economic Review (ICER) in determining whether treatments fall below a $100,000 “cost per quality-adjusted-life-year” limit. This type of cost effectiveness analysis discriminates against people with disabilities and other vulnerable groups like the elderly because it assigns higher value to people in “perfect health” than people in less-than-perfect health. Policy decisions based on cost-effectiveness ignore important differences among patients and instead rely on a single, one-size-fits-all assessment. Further, cost-effectiveness analysis discriminates against the chronically ill, the elderly and people with disabilities, using algorithms that calculate their lives as 'worth less' than people who are younger or non-disabled. Join PIPC in demanding that insurers and others stop relying on discriminatory cost-effectiveness thresholds to drive care decisions. Click here to learn more.
5. Register: PQA’s Social Determinants of Health Forum
The Pharmacy Quality Alliance (PQA) is hosting the “Social Determinants of Health Forum: Exploring Medication Access and Quality” November 14-15 in Alexandria, Va. “Healthcare improvement initiatives have focused largely on health system factors. There is growing recognition that improving access to care and patient health, including access to medications, requires focus on social, economic and environmental factors. To help forum participants identify opportunities to improve medication access, PQA will unveil a conceptual framework describing the medication access patient journey and its implications for quality measurement. The forum also will explore the ROI of new care delivery models, discuss the role of healthcare providers, including pharmacists, and the utility of new data ecosystems in these models. PQA invites senior healthcare decision-makers to attend this interactive forum, as consensus and collaboration are needed to address unmet social needs and their impact on medication access and healthcare quality. There is no charge to attend, but individuals must register in advance. Please limit 2-3 representatives per organization.” Click here to register
6. STAT: Turning the tables, people with mental illness share what they want scientists to study
In an article for STAT News, the Milken Institute and Depression and Bipolar Support Alliance (DBSA) have been emphasizing the patient perspective in their survey of patients with depression or bipolar disorder. Patients are usually the subject of scientific studies, not the designers. But a new effort is trying to bring patients’ priorities to the forefront in research on mental health. For months, the Milken Institute and the Depression and Bipolar Support Alliance have been collecting the perspectives of patients with depression or bipolar disorder. The first-of-its-kind survey poses a question patients don’t often get asked: What questions about your health and experience with depression or bipolar disorder would you most like research to help you answer?The responses have poured in. Since launching the survey in August, more than 5,600 people have taken part. “The hardest thing I’ve gone through with my med team is the trial and error of medications,” one respondent wrote. “I’ve felt like a guinea pig for years. It would be nice to have only had to go through one med and had it work.” Click here read the article.
7. Call for Webinar Participants: To Inform a Patient-Centered Outcomes Research Agenda for Personalized Medicine
The Personalized Medicine Coalition (PMC) is seeking patients, patient advocates, caregivers, health care professionals and academic researchers to participate in a series of webinar discussions to inform a patient-centered research agenda for personalized medicine. Personalized medicine is an evolving approach to health care based on the latest science where physicians use diagnostic tests to determine which medical treatments will work best for each patient. By combining the information from those tests with an individual’s medical history, circumstances and values, health care providers can develop tailored treatment and prevention plans. These webinar discussions will develop principles for how to better align priority patient outcomes with personalized medicine treatment strategies and outcomes research. Contact David Davenport if you are interested in participating.
8. DBSA Meeting: Patient Focused Drug Development Meeting
As a part of the Depression and Bipolar Support Alliance’s (DBSA) “Well Beyond Blue” campaign, DBSA will be hosting a meeting with the Food and Drug Administration (FDA) that focuses on patient-focused drug development. “Putting wellness within every individual’s reach is at the core of the DBSA mission, strategies, and programs. Key to that mission is educating decision-makers who conduct research, and make public health policy on wellness. That’s why we are hosting a meeting in the Washington, D.C. metro area on November 16, 2018 with the U.S. Food and Drug Administration (FDA) and drug and medical device manufacturers. This meeting will empower people living with depression and/or bipolar to share personal views on aspects of wellness that go beyond mere symptom reduction, as well as, name wellness strategies that work best for them. But we can’t do it without you. Our collective voices are needed in-person at this meeting which will be held in Silver Spring, MD. We intentionally scheduled the meeting to begin at 12:30 p.m., enabling people who live within driving distance to attend.” Click here to register.
9. Mental Health America: 2019 Call for Proposals is Now Open
Mental Health America is now accepting workshop proposals for its 2019 Annual Conference Dueling Mental Health and Chronic Conditions in Children and Adults. “There is a lack of uniformity across the health spectrum in how illnesses are categorized and deemed as chronic diseases and chronic conditions. Not only does this create confusion, but it may lead professionals across the spectrum to focus on specific illnesses and disregard other aspects of the person being treated, including co-occurring issues like mental health conditions and broader societal conditions such as poverty, trauma, and racism. To effectively treat an individual, we must look at the whole person, which means examining the connections that exist between traditional chronic physical conditions and mental health concerns. At MHA’s Annual Conference, we will offer a traditional mixture of keynote speakers, plenary discussions and workshop panels.” Click here for details. Deadline: November 30, 2018.
10. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures
The Centers for Medicare and Medicaid (CMS) are seeking nominations for a technical expert panel (TEP) examining CMS quality and efficiency measures. Health Services Advisory Group (HSAG) is seeking a TEP of approximately 15 to 20 individuals with the following perspectives and areas of expertise:
- Patient/family/caregiver perspectives
- Consumer and patient advocacy
- Social risk factors and disparities
- Health care quality improvement and clinical expertise in various settings (e.g., long-term care, acute care, ambulatory care, hospice)
- Quality measure development and evaluation, including statistical methods and survey design
- Health care economics and policy
11. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder
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:
Prostate Cancer: Final Evidence Report 10/4/18
Amyloidosis: Final Report 10/4/18
Hereditary Angiodema: Public Meeting 10/25/18
Opioid Use Disorder: Draft Evidence Report 9/5/2018 with comment period through 10/4/2018
Asthma: Draft Voting Questions and Evidence Report 9/24/2018 with comments through 10/22/2018
Atherosclerotic Cardiovascular Disease: Draft Scoping Document 8/30/2018, comments open through 12/17/18
Spinal Muscular Atrophy: Revised Scoping Document Published 9/19/18
12. Upcoming Events and Webinars
Advisory Panel on Patient Engagement Fall 2018 Meeting
October 30, 2018
Click here for details.
Facebook Live: Does Telehealth Improve Outcomes for Patients with Serious Mental Illness?
November 1, 2018
Click here for details.
2018 PCORI Annual Meeting Breakout Session: A Congressional Perspective on Patient-Centered Outcomes Research
November 1, 2018
Click here for details.
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
14th Annual Personalized Medicine Conference: Preparing for the New Possible
November 14-15, 2018
Click here for details.
PQA Social Determinants of Health Forum: Exploring Medication Access and Quality
November 14-15, 2018
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Fall 2018 Meeting
November 15, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
PCORI Board of Governors Meeting
December 11, 2018
Click here for details.
Advisory Panel on Rare Disease Winter 2018 Meeting
December 14, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
13. Medical Journal Articles
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research- A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Unique Review Criteria and Patient and Stakeholder Reviewers- Analysis of PCORI's Approach to Research Funding, click here to view.
Patient Centered Research to Improve Community Involvement (PaRTICIpate) in Diabetes Self-Management: A Conference Series for Developing Collaborations Between Researchers, Stakeholders, and Patients, click here to view.
Synthesising Conceptual Frameworks for Patient and Public Involvement in Research – A Critical Appraisal of a Meta-Narrative Review, click here to view.
Go Slow to Go Fast: Successful Engagement Strategies for Patient-Centered, Multi-Site Research, Involving Academic and Community-Based Organizations, click hereto view.
Unique Review Criteria and Patient and Stakeholder Reviewers: Analysis of PCORI's Approach to Research Funding, click here to view.
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research: A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Patient-Engaged Research: Choosing the "Right" Patients to Avoid Pitfalls, click here to view.
Engaging Patients in Health Care Epidemiology Research: A Case Example, click here to view.
A Beginning to Principles of Ethical and Regulatory Oversight of Patient-Centered Research, click here to view.
Oversight of Patient-Centered Outcomes Research: Recommendations From a Delphi Panel, click here to view.
Key Issues and Potential Solutions for Understanding Healthcare Preference Heterogeneity Free from Patient-Level Scale Confounds, click here to view.
Applying a Community-Based Participatory Research Framework to Patient and Family Engagement in the Development of Patient-Centered Outcomes Research and Practice, click here to view.
The Community and Patient Partnered Research Network (CPPRN): Application of Patient-Centered Outcomes Research to Promote Behavioral Health Equity, click here to view.
14. AHRQ Effective Program Updates
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
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.
