In This Week’s Issue:
1. AJMC: Is One Answer Good Enough for All? Defining Value in Healthcare, click here to read the article.
2. Patient EngagementHIT: Why Quality Measures Must Reflect Patient Values, Care Experience, click here to read the article.
3. Upcoming ICER Studies: Prostate Cancer, Spinal Muscular Atrophy, Cardiovascular Disease, Asthma, Opioid, Hereditary Angioedema, Amyloidosis, click here to provide input.
4. Supporting Wellness: A Survey of Lived Experience and Research Priorities for Depression and Bipolar, click here to take the survey.
5. AcademyHealth Blog: Patient-Centered Approaches: Accepted & Increasingly Expected, click here to read the blog.
6. NYT: This Drug Is Safe and Effective. Wait. Compared With What?
7. CARE About Fibroids Call for Patient Stories: Uterine Fibroids, click here to submit your story.
8. National Meeting on Active Duty and Veteran Women’s Health, see details below.
9. 2018 PCORI Annual Meeting, click here for details.
10. PCORI Peer Review Opportunity, click here to apply.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below.
1. AJMC: Is One Answer Good Enough for All? Defining Value in Healthcare, click here to read the article.
2. Patient EngagementHIT: Why Quality Measures Must Reflect Patient Values, Care Experience, click here to read the article.
3. Upcoming ICER Studies: Prostate Cancer, Spinal Muscular Atrophy, Cardiovascular Disease, Asthma, Opioid, Hereditary Angioedema, Amyloidosis, click here to provide input.
4. Supporting Wellness: A Survey of Lived Experience and Research Priorities for Depression and Bipolar, click here to take the survey.
5. AcademyHealth Blog: Patient-Centered Approaches: Accepted & Increasingly Expected, click here to read the blog.
6. NYT: This Drug Is Safe and Effective. Wait. Compared With What?
7. CARE About Fibroids Call for Patient Stories: Uterine Fibroids, click here to submit your story.
8. National Meeting on Active Duty and Veteran Women’s Health, see details below.
9. 2018 PCORI Annual Meeting, click here for details.
10. PCORI Peer Review Opportunity, click here to apply.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below.
1. AJMC: Is One Answer Good Enough for All? Defining Value in Healthcare
In an article for the American Journal of Managed Care, Jennifer Bright and Mark Linthicum criticize the recent decision by CVS Caremark to incorporate ICER’s flawed value metrics when determining coverage for prescription medications. “For example, pharmacy benefit manager (PBM) CVS Caremark recently announced it is introducing a new prescription drug cost management program for payers that would exclude from coverage certain new treatments that do not meet cost effectiveness benchmarks, specifically those used by the Institute for Clinical and Economic Review (ICER). Moreover, the health insurance lobby organization, America’s Health Insurance Plans, as well as the PBM lobby, the Pharmaceutical Care Management Association, each recommended in comment letters on the Trump Administration’s blueprint to lower drug prices that the federal government rely solely on ICER to assess value. It’s premature to conclude that we should have a single arbiter of value in our healthcare system.” Click here to read the article.
2. Patient EngagementHIT: Why Quality Measures Must Reflect Patient Values, Care Experience
In an article for Patient EngagementHIT, Sara Heath writes that when determining value and quality, it is essential medical professionals account for patient values and preferences to improve the care experience. “Delivering quality care and creating high-value hospital encounters is essential to a positive patient experience. Understanding how to measure value will help target organization efforts. But how does the medical industry ensure quality measures truly facilitate the best possible care experience? Creating useful quality measures is one of the key challenges facing healthcare today, according to experts from the Innovation and Value Initiative (IVI). The first step to surmounting that challenge is understanding how the definition of value changes amongst stakeholders, according to Mark Linthicum and Jennifer Bright, IVI’s director of scientific communications and executive director, respectively.” Click here to read the article.
3. Upcoming ICER Studies: Prostate Cancer, Spinal Muscular Atrophy, Cardiovascular Disease, Asthma, Opioid, Hereditary Angioedema, Amyloidosis
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: Meeting 9/13/2018
Amyloidosis: Midwest CEPAC Meeting 9/13/2018
Hereditary Angiodema: Public Comment Period on Draft Evidence Report! 8/22/2018-9/20-2018
Opioid Use Disorder: Draft Evidence Report 9/5/2018 with comment period through 10/2/2018
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
Spinal Muscular Atrophy: Comment Period on Draft Scoping Document! 8/22/18-9/7/18
4. Supporting Wellness: A Survey of Lived Experience and Research Priorities for Depression and Bipolar
The Depression and Bipolar Support Alliance and the Milken Institute Center for Strategic Philanthropy have partnered for a new initiative that seeks to understand how adults affected by depression and bipolar describe wellness and what types of research matter most to them. “If you or a loved one have been affected by depression or bipolar disorder, we want to hear YOUR voice. Your experiences are needed to discover, develop, and deliver better medical products and care services. The Milken Institute and DBSA hope to bring thousands of voices from the community to the forefront of mental health treatment and research conversations. Take and share this survey so that we can include the diversity of voices in the discussion of mental health research.” Click here to take the survey.
5. AcademyHealth Blog: Patient-Centered Approaches: Accepted & Increasingly Expected
In a blog post for AcademyHealth, Rachel Dungan writes several particularly notable moments at AcademyHealth’s Annual Research Meeting suggested that patient-centered approaches will continue to feature, significantly and sustainably, as the field of health services research (HSR) advances. “...Supported in part by the Patient-Centered Outcomes Research Institute, a session entitled ‘Sustaining Partnerships for Patient-Centered Outcomes Research’ featured a diverse panel comprised of PCORI representatives alongside patient and researcher partners. Session tone and content fully reflected PCORI's commitment to support research that simultaneously retains methodological rigor - and remains responsive to patient partners' or participants' goals, needs, preferences, and values.” Click here to read the blog.
6. NYT: This Drug Is Safe and Effective. Wait. Compared With What?
In a blog post for the New York Times’ blog TheUpshot, Aaron Carroll writes that comparative effectiveness research may be the best way to answer questions that patients and physicians face every day. “Basic science research is necessary to make breakthroughs in how treatments might be created. Randomized controlled trials are necessary to determine if they have efficacy. Pragmatic trials can tell us if and how they’re effective in real world settings. Health services research can improve the ways in which we deliver them. But without comparative effectiveness research, too many important questions that concern patients will remain unanswered.” Clickhere to read the blog.
7. CARE About Fibroids Call for Patient Stories: Uterine Fibroids
PIPC Member CARE About Fibroids is seeking stories from patients who suffer from uterine fibroids as a part of their ongoing efforts to boost education and awareness.” As part of our efforts for Uterine Fibroids Awareness Month, CARE About Fibroids is launching an initiative to collect first-hand stories from patients who have experienced symptomatic uterine fibroids. The information we are collecting from you can be relayed to us anonymously and will not be shared -- however, we may be interested in including your story as part of a research paper on uterine fibroids that we are developing (you can indicate below if you are willing to be part of our research paper). We know your stories will help inform our work to raise awareness about uterine fibroids and learn how we can educate patients in even greater ways than currently available.” Click here to submit your story.
8. Today: National Meeting on Active Duty and Veteran Women’s Health
Do you have patients that are active duty and veteran women? Register to attend the National Meeting on Active Duty and Veteran Women’s Health in Washington, DC on August 27 to discuss best practices in and new research on delivering quality care to military women, particularly in traditional clinical settings. The meeting is free to attend and will be live streamed here for those unable to attend in person.
9. 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.
10. PCORI Peer Review Opportunity
PCORI is seeking patients and stakeholders to review for upcoming PCORI-funded research studies that have reached completion. Of particular need are reviewers who have had, or have considered, bariatric surgery, as well as those who identify as African American and/or Latino who are living with asthma or serve as a caretaker for an older adult with asthma are of a particular need. The goal of peer review is to ensure that the primary research studies funded by the Patient Centered Outcomes Research Institute (PCORI) are held to the highest standards of scientific integrity, methodological rigor, and usefulness to patients, caregivers, clinicians, and other healthcare stakeholders. If you’re interested or know someone who is interested in participating in this capacity, please contact Kira Lesley with Editorial Office for PCORI Peer Review at [email protected]. Click here for additional details. Click here to apply for a scholarship to attend.
11. Upcoming Events and Webinars
PCORI Type 2 Diabetes Mellitus Expert Meeting
August 27, 2018
Click here for details.
PCORI Online: Cycle 2 2018 Application Submission Webinar
August 28, 2018
Click here for details.
PCORI Board of Governors Meeting
September 7, 2018
Click here for details.
Patient Engagement in Real World Evidence
September 12, 2018
Click here for details.
Training Course on Real-World Data
September 27-28, 2018
Click here for details.
Second Annual Duke-Margolis Conference on Real-World Data and Evidence
October 3, 2018
Click here for details.
3rd Annual Outcomes-Based Contracting Summit
October 3-4, 2018
Click here for details.
Cycle 3 2018 Improving Methods Applicant Town Hall
October 17, 2018
Click here for details.
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
12. Medical Journal Articles
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.
Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network, click here to view.
A Novel Stakeholder Engagement Approach for Patient-Centered Outcomes Research, click here to view.
Multistakeholder Engagement in PCORnet, the National Patient-Centered Clinical Research Network, click here to view.
Return of Research Results to Study Participants: Uncharted and Untested, click here to view.
Inverting the Patient Involvement Paradigm: Defining Patient Led Research, click here to view.
Stakeholder-Driven, Consensus Development Methods to Design an Ethical Framework and Guidelines for Engaged Research, clickhere to view.
The Effect of Medical Technology Innovations on Patient Outcomes, 1990-2015: Results of a Physician Survey, click here to view.
13. AHRQ Effective Program Updates
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.
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.
In an article for the American Journal of Managed Care, Jennifer Bright and Mark Linthicum criticize the recent decision by CVS Caremark to incorporate ICER’s flawed value metrics when determining coverage for prescription medications. “For example, pharmacy benefit manager (PBM) CVS Caremark recently announced it is introducing a new prescription drug cost management program for payers that would exclude from coverage certain new treatments that do not meet cost effectiveness benchmarks, specifically those used by the Institute for Clinical and Economic Review (ICER). Moreover, the health insurance lobby organization, America’s Health Insurance Plans, as well as the PBM lobby, the Pharmaceutical Care Management Association, each recommended in comment letters on the Trump Administration’s blueprint to lower drug prices that the federal government rely solely on ICER to assess value. It’s premature to conclude that we should have a single arbiter of value in our healthcare system.” Click here to read the article.
2. Patient EngagementHIT: Why Quality Measures Must Reflect Patient Values, Care Experience
In an article for Patient EngagementHIT, Sara Heath writes that when determining value and quality, it is essential medical professionals account for patient values and preferences to improve the care experience. “Delivering quality care and creating high-value hospital encounters is essential to a positive patient experience. Understanding how to measure value will help target organization efforts. But how does the medical industry ensure quality measures truly facilitate the best possible care experience? Creating useful quality measures is one of the key challenges facing healthcare today, according to experts from the Innovation and Value Initiative (IVI). The first step to surmounting that challenge is understanding how the definition of value changes amongst stakeholders, according to Mark Linthicum and Jennifer Bright, IVI’s director of scientific communications and executive director, respectively.” Click here to read the article.
3. Upcoming ICER Studies: Prostate Cancer, Spinal Muscular Atrophy, Cardiovascular Disease, Asthma, Opioid, Hereditary Angioedema, Amyloidosis
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: Meeting 9/13/2018
Amyloidosis: Midwest CEPAC Meeting 9/13/2018
Hereditary Angiodema: Public Comment Period on Draft Evidence Report! 8/22/2018-9/20-2018
Opioid Use Disorder: Draft Evidence Report 9/5/2018 with comment period through 10/2/2018
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
Spinal Muscular Atrophy: Comment Period on Draft Scoping Document! 8/22/18-9/7/18
4. Supporting Wellness: A Survey of Lived Experience and Research Priorities for Depression and Bipolar
The Depression and Bipolar Support Alliance and the Milken Institute Center for Strategic Philanthropy have partnered for a new initiative that seeks to understand how adults affected by depression and bipolar describe wellness and what types of research matter most to them. “If you or a loved one have been affected by depression or bipolar disorder, we want to hear YOUR voice. Your experiences are needed to discover, develop, and deliver better medical products and care services. The Milken Institute and DBSA hope to bring thousands of voices from the community to the forefront of mental health treatment and research conversations. Take and share this survey so that we can include the diversity of voices in the discussion of mental health research.” Click here to take the survey.
5. AcademyHealth Blog: Patient-Centered Approaches: Accepted & Increasingly Expected
In a blog post for AcademyHealth, Rachel Dungan writes several particularly notable moments at AcademyHealth’s Annual Research Meeting suggested that patient-centered approaches will continue to feature, significantly and sustainably, as the field of health services research (HSR) advances. “...Supported in part by the Patient-Centered Outcomes Research Institute, a session entitled ‘Sustaining Partnerships for Patient-Centered Outcomes Research’ featured a diverse panel comprised of PCORI representatives alongside patient and researcher partners. Session tone and content fully reflected PCORI's commitment to support research that simultaneously retains methodological rigor - and remains responsive to patient partners' or participants' goals, needs, preferences, and values.” Click here to read the blog.
6. NYT: This Drug Is Safe and Effective. Wait. Compared With What?
In a blog post for the New York Times’ blog TheUpshot, Aaron Carroll writes that comparative effectiveness research may be the best way to answer questions that patients and physicians face every day. “Basic science research is necessary to make breakthroughs in how treatments might be created. Randomized controlled trials are necessary to determine if they have efficacy. Pragmatic trials can tell us if and how they’re effective in real world settings. Health services research can improve the ways in which we deliver them. But without comparative effectiveness research, too many important questions that concern patients will remain unanswered.” Clickhere to read the blog.
7. CARE About Fibroids Call for Patient Stories: Uterine Fibroids
PIPC Member CARE About Fibroids is seeking stories from patients who suffer from uterine fibroids as a part of their ongoing efforts to boost education and awareness.” As part of our efforts for Uterine Fibroids Awareness Month, CARE About Fibroids is launching an initiative to collect first-hand stories from patients who have experienced symptomatic uterine fibroids. The information we are collecting from you can be relayed to us anonymously and will not be shared -- however, we may be interested in including your story as part of a research paper on uterine fibroids that we are developing (you can indicate below if you are willing to be part of our research paper). We know your stories will help inform our work to raise awareness about uterine fibroids and learn how we can educate patients in even greater ways than currently available.” Click here to submit your story.
8. Today: National Meeting on Active Duty and Veteran Women’s Health
Do you have patients that are active duty and veteran women? Register to attend the National Meeting on Active Duty and Veteran Women’s Health in Washington, DC on August 27 to discuss best practices in and new research on delivering quality care to military women, particularly in traditional clinical settings. The meeting is free to attend and will be live streamed here for those unable to attend in person.
9. 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.
10. PCORI Peer Review Opportunity
PCORI is seeking patients and stakeholders to review for upcoming PCORI-funded research studies that have reached completion. Of particular need are reviewers who have had, or have considered, bariatric surgery, as well as those who identify as African American and/or Latino who are living with asthma or serve as a caretaker for an older adult with asthma are of a particular need. The goal of peer review is to ensure that the primary research studies funded by the Patient Centered Outcomes Research Institute (PCORI) are held to the highest standards of scientific integrity, methodological rigor, and usefulness to patients, caregivers, clinicians, and other healthcare stakeholders. If you’re interested or know someone who is interested in participating in this capacity, please contact Kira Lesley with Editorial Office for PCORI Peer Review at [email protected]. Click here for additional details. Click here to apply for a scholarship to attend.
11. Upcoming Events and Webinars
PCORI Type 2 Diabetes Mellitus Expert Meeting
August 27, 2018
Click here for details.
PCORI Online: Cycle 2 2018 Application Submission Webinar
August 28, 2018
Click here for details.
PCORI Board of Governors Meeting
September 7, 2018
Click here for details.
Patient Engagement in Real World Evidence
September 12, 2018
Click here for details.
Training Course on Real-World Data
September 27-28, 2018
Click here for details.
Second Annual Duke-Margolis Conference on Real-World Data and Evidence
October 3, 2018
Click here for details.
3rd Annual Outcomes-Based Contracting Summit
October 3-4, 2018
Click here for details.
Cycle 3 2018 Improving Methods Applicant Town Hall
October 17, 2018
Click here for details.
eyeforpharma Value Summit 2018
November 7-8, 2018
Click here for details.
Advisory Panel on Clinical Effectiveness and Decision Science Fall 2018 Meeting
November 30, 2018
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
12. Medical Journal Articles
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.
Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network, click here to view.
A Novel Stakeholder Engagement Approach for Patient-Centered Outcomes Research, click here to view.
Multistakeholder Engagement in PCORnet, the National Patient-Centered Clinical Research Network, click here to view.
Return of Research Results to Study Participants: Uncharted and Untested, click here to view.
Inverting the Patient Involvement Paradigm: Defining Patient Led Research, click here to view.
Stakeholder-Driven, Consensus Development Methods to Design an Ethical Framework and Guidelines for Engaged Research, clickhere to view.
The Effect of Medical Technology Innovations on Patient Outcomes, 1990-2015: Results of a Physician Survey, click here to view.
13. AHRQ Effective Program Updates
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.
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.
