In This Week’s Issue:
1. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments, click here to read the report.
2. Over 90 Stakeholder Groups to CVS: Don't Discriminate on Care, view letter here.
3. NAM Essay: Transformation — My Experience as a Patient and an Advocate in Three Chapters, click here to view Gwen’s personal story.
4. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
5. Patient EngagementHIT: How Does Medication Prescribing Impact Patient Satisfaction Levels? Click here to read the article.
6. The PCORI Blog: An Exciting Step Forward — New Support for the Next Generation of Learning-Health-System Researchers, click here to read the blog.
7. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
8. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply.
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit, click here to register.
11. 2018 PCORI Annual Meeting, click here for details.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
1. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments, click here to read the report.
2. Over 90 Stakeholder Groups to CVS: Don't Discriminate on Care, view letter here.
3. NAM Essay: Transformation — My Experience as a Patient and an Advocate in Three Chapters, click here to view Gwen’s personal story.
4. DBSA Meeting: Patient Focused Drug Development Meeting, click here to register.
5. Patient EngagementHIT: How Does Medication Prescribing Impact Patient Satisfaction Levels? Click here to read the article.
6. The PCORI Blog: An Exciting Step Forward — New Support for the Next Generation of Learning-Health-System Researchers, click here to read the blog.
7. Mental Health America: 2019 Call for Proposals is Now Open, click here for details
8. CMS Technical Expert Panel Opportunity: Impact Assessment of CMS Quality and Efficiency Measures, click here to apply.
9. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, click here to provide patient input.
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit, click here to register.
11. 2018 PCORI Annual Meeting, click here for details.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
1. PIPC/Xcenda: Finding the Patient Voice in ICER’s Value Assessments
PIPC has partnered with Xcenda to quantify the extent to which ICER incorporates stakeholder input in its final assessments, particularly patients. Upon review of submitted comments, and comparing those comments to ICER’s final value assessments, Xcenda was able to quantify that patient perspectives were half as likely to be incorporated than other stakeholders. The brief published today by PIPC bolsters their argument that ICER needs to take steps to improve not only its process for engagement, but also its consideration of input received from patients. Click here to read the report.
2. Over 90 Stakeholder Groups to CVS: Don't Discriminate on Care
More than 90 leading stakeholder organizations representing patients, people with disabilities, physicians, and caregivers wrote a letter to CVS Caremark in opposition to a new policy that would discriminate against individuals with disabilities and chronic illnesses.
In August, CVS announced that they would offer new insurance plans 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. As the letter states, "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."
The letter goes on to point out that "CVS Health’s stated purpose is 'helping people on their path to better health.' Reliance on cost-effectiveness thresholds like ICER’s falls short of this purpose, replacing deeply personal, individual health care decisions with an opaque algorithm based on average study results that do not address the needs of different patients and special populations.” Click here to read the letter, and click here to track continuing coverage of our campaign against coverage policies that discriminate against people with disabilities and serious chronic conditions.
3. NAM Essay: Transformation — My Experience as a Patient and an Advocate in Three Chapters
PIPC applauds Gwen Darien, Executive Vice President of Patient Advocacy for the National Patient Advocate Foundation, for her personal, thoughtful and insightful perspective published in an essay for the National Academy of Medicine. Gwen concluded her story of being a 2-time cancer survivor and public cancer patient by stating, "Throughout my patient advocacy career, I have focused on ensuring that the core value of self-advocacy—'nothing about me, without me'—is a universal value of the health care delivery system. Everyone who is facing a serious illness must be treated with dignity, respect, and compassion—and must be given the opportunity to define what it means to be co-creators of their own health and care. My aspiration is a health care system in which patients and their physicians are truly equal partners, each with our own expertise and experience that is deeply respected by the other party. It is straightforward but not simple to achieve. There will always be tension in the broad, complex, and multidimensional world of biomedical research and health care delivery. We will always need advocates to push for increased health equity, better care, more research, and more person-centric policies. My own experience has deepened my belief that transformation is possible.” We are grateful for Gwen’s leadership! Click here to view Gwen’s personal story.
4. 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.
5. Patient EngagementHIT: How Does Medication Prescribing Impact Patient Satisfaction Levels?
In an article for Patient EngagementHIT, Sara Heath reports on a new study in the JAMA Internal Medicine that suggests providers prescribe medications in an attempt to increase patient satisfaction. “When a provider encounters a patient with a viral respiratory tract infection, it could be ideal to explain to patients the differences between viral and bacterial, and how different treatments work better for either condition. But often, it is easier and more timely for a provider to simply prescribe the medication, a separate study looking at the same trend found. The study, which used the same data set as the JAMA study, found that providers know it is best to deliver better patient education about common cold treatments, but that it’s less cumbersome to simply prescribe the antibiotic. To combat that trend, policymakers could implement incentives for delivering this level of patient education about treatment. Additionally, policymakers may consider different incentives for reimbursements based on patient satisfaction; these policies should be more nuanced, taking into consideration both the importance of patient satisfaction and of better medication prescribing stewardship.” Click here to read the article.
6. The PCORI Blog: An Exciting Step Forward — New Support for the Next Generation of Learning-Health-System Researchers
PCORI Executive Director Dr. Joe Selby and Gopal Khanna discuss PCORI’s partnership with the Agency for Healthcare Research and Quality (AHRQ) in a post for The PCORI Blog. “In a blog last fall, we announced an exciting joint initiative from our two organizations—[AHRQ] and [PCORI]—to support the training of clinician and research scientists to conduct patient-centered outcomes research within learning health systems...[W]e are very pleased to tell you about the awards we've just made under this joint program. The 11 institutions that were awarded $40 million in grants over five years will represent a new, driving force to accelerate health system performance and improvements in patient outcomes. Click here to read the blog.
7. 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.
8. 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:
Click here to apply.
9. 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
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit
The 2018 Health Care Payment and Learning Action Network (LAN) will hold its fall summit on Monday, 0ctober 22, 2018, including a panel on patient engagement with PIPC Executive Director Sara van Geertruyden. The 2018 Summit will continue to build on the momentum of the LAN by bringing together stakeholders from across the health care system to transform payment in a way that emphasizes quality over volume. The Summit will feature leaders and innovators in health care as speakers in plenary and break-out sessions throughout the day, including the following: Industry leaders discussing an array of innovations in payment reform, touching on implementation methods and lessons learned; Federal and state health care purchasers describing how they are addressing the current and future health care delivery challenges via new payment models that put the patient first; and LAN Summit attendees collaborating in facilitated workshops designed for specific stakeholder groups focusing on vital areas of interest – and challenges — surrounding design and implementation of APMs. Click here to register, and click here to view the agenda.
11. 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. “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 for details.
12. Upcoming Events and Webinars
Cycle 3 2018 Improving Methods Applicant Town Hall
October 17, 2018
Click here for details.
PCORI Online: Cycle 3 2018 LOI Submission Webinar
October 23, 2018
Click here for details.
PCORI's New Data Sharing and Data Management Policy: What You Need to Know
October 24, 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.
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
Personalization of Medicine Requires Better Observational Evidence, 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.
Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards, click here to view.
"Precision Health" for High-Need, High-Cost Patients, click here to view.
Industry Sponsorship and Research Outcome: Systematic Review with Meta-Analysis, click here to view.
Picture This: Presenting Longitudinal Patient-Reported Outcome Research Study Results to Patients, click here to view.
Patient-Reported Outcome Measures in the Food and Drug Administration Pilot Compendium: Meeting Today's Standards for Patient Engagement in Development, click here to view.
A Qualitative Study of Patients' Perceptions of the Utility of Patient-Reported Outcome Measures of Symptoms in Primary Care Clinics, 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.
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.
PIPC has partnered with Xcenda to quantify the extent to which ICER incorporates stakeholder input in its final assessments, particularly patients. Upon review of submitted comments, and comparing those comments to ICER’s final value assessments, Xcenda was able to quantify that patient perspectives were half as likely to be incorporated than other stakeholders. The brief published today by PIPC bolsters their argument that ICER needs to take steps to improve not only its process for engagement, but also its consideration of input received from patients. Click here to read the report.
2. Over 90 Stakeholder Groups to CVS: Don't Discriminate on Care
More than 90 leading stakeholder organizations representing patients, people with disabilities, physicians, and caregivers wrote a letter to CVS Caremark in opposition to a new policy that would discriminate against individuals with disabilities and chronic illnesses.
In August, CVS announced that they would offer new insurance plans 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. As the letter states, "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."
The letter goes on to point out that "CVS Health’s stated purpose is 'helping people on their path to better health.' Reliance on cost-effectiveness thresholds like ICER’s falls short of this purpose, replacing deeply personal, individual health care decisions with an opaque algorithm based on average study results that do not address the needs of different patients and special populations.” Click here to read the letter, and click here to track continuing coverage of our campaign against coverage policies that discriminate against people with disabilities and serious chronic conditions.
3. NAM Essay: Transformation — My Experience as a Patient and an Advocate in Three Chapters
PIPC applauds Gwen Darien, Executive Vice President of Patient Advocacy for the National Patient Advocate Foundation, for her personal, thoughtful and insightful perspective published in an essay for the National Academy of Medicine. Gwen concluded her story of being a 2-time cancer survivor and public cancer patient by stating, "Throughout my patient advocacy career, I have focused on ensuring that the core value of self-advocacy—'nothing about me, without me'—is a universal value of the health care delivery system. Everyone who is facing a serious illness must be treated with dignity, respect, and compassion—and must be given the opportunity to define what it means to be co-creators of their own health and care. My aspiration is a health care system in which patients and their physicians are truly equal partners, each with our own expertise and experience that is deeply respected by the other party. It is straightforward but not simple to achieve. There will always be tension in the broad, complex, and multidimensional world of biomedical research and health care delivery. We will always need advocates to push for increased health equity, better care, more research, and more person-centric policies. My own experience has deepened my belief that transformation is possible.” We are grateful for Gwen’s leadership! Click here to view Gwen’s personal story.
4. 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.
5. Patient EngagementHIT: How Does Medication Prescribing Impact Patient Satisfaction Levels?
In an article for Patient EngagementHIT, Sara Heath reports on a new study in the JAMA Internal Medicine that suggests providers prescribe medications in an attempt to increase patient satisfaction. “When a provider encounters a patient with a viral respiratory tract infection, it could be ideal to explain to patients the differences between viral and bacterial, and how different treatments work better for either condition. But often, it is easier and more timely for a provider to simply prescribe the medication, a separate study looking at the same trend found. The study, which used the same data set as the JAMA study, found that providers know it is best to deliver better patient education about common cold treatments, but that it’s less cumbersome to simply prescribe the antibiotic. To combat that trend, policymakers could implement incentives for delivering this level of patient education about treatment. Additionally, policymakers may consider different incentives for reimbursements based on patient satisfaction; these policies should be more nuanced, taking into consideration both the importance of patient satisfaction and of better medication prescribing stewardship.” Click here to read the article.
6. The PCORI Blog: An Exciting Step Forward — New Support for the Next Generation of Learning-Health-System Researchers
PCORI Executive Director Dr. Joe Selby and Gopal Khanna discuss PCORI’s partnership with the Agency for Healthcare Research and Quality (AHRQ) in a post for The PCORI Blog. “In a blog last fall, we announced an exciting joint initiative from our two organizations—[AHRQ] and [PCORI]—to support the training of clinician and research scientists to conduct patient-centered outcomes research within learning health systems...[W]e are very pleased to tell you about the awards we've just made under this joint program. The 11 institutions that were awarded $40 million in grants over five years will represent a new, driving force to accelerate health system performance and improvements in patient outcomes. Click here to read the blog.
7. 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.
8. 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
Click here to apply.
9. 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
10. 2018 Health Care Payment Learning and Action Network (LAN) Fall Summit
The 2018 Health Care Payment and Learning Action Network (LAN) will hold its fall summit on Monday, 0ctober 22, 2018, including a panel on patient engagement with PIPC Executive Director Sara van Geertruyden. The 2018 Summit will continue to build on the momentum of the LAN by bringing together stakeholders from across the health care system to transform payment in a way that emphasizes quality over volume. The Summit will feature leaders and innovators in health care as speakers in plenary and break-out sessions throughout the day, including the following: Industry leaders discussing an array of innovations in payment reform, touching on implementation methods and lessons learned; Federal and state health care purchasers describing how they are addressing the current and future health care delivery challenges via new payment models that put the patient first; and LAN Summit attendees collaborating in facilitated workshops designed for specific stakeholder groups focusing on vital areas of interest – and challenges — surrounding design and implementation of APMs. Click here to register, and click here to view the agenda.
11. 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. “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 for details.
12. Upcoming Events and Webinars
Cycle 3 2018 Improving Methods Applicant Town Hall
October 17, 2018
Click here for details.
PCORI Online: Cycle 3 2018 LOI Submission Webinar
October 23, 2018
Click here for details.
PCORI's New Data Sharing and Data Management Policy: What You Need to Know
October 24, 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.
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
Personalization of Medicine Requires Better Observational Evidence, 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.
Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards, click here to view.
"Precision Health" for High-Need, High-Cost Patients, click here to view.
Industry Sponsorship and Research Outcome: Systematic Review with Meta-Analysis, click here to view.
Picture This: Presenting Longitudinal Patient-Reported Outcome Research Study Results to Patients, click here to view.
Patient-Reported Outcome Measures in the Food and Drug Administration Pilot Compendium: Meeting Today's Standards for Patient Engagement in Development, click here to view.
A Qualitative Study of Patients' Perceptions of the Utility of Patient-Reported Outcome Measures of Symptoms in Primary Care Clinics, 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.
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.
