In This Week’s Issue:
1. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare, see details below.
2. PIPC Patient Blog: Close-Minded Medicaid Proposals Would Harm Patients, click here to read the blog.
3. Patient EngagementHIT: How Do Patient-Centered Medical Homes Support Patient Engagement? Click here to read the article.
4. Neurology Advisor: Language Used in Medical Record Can Affect Patient Care, click here to read the article.
5. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
6. Upcoming Events and Webinars, see details below.
7. Medical Journal Articles, see details below.
8. AHRQ Effective Program Updates, see details below.
1. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare, see details below.
2. PIPC Patient Blog: Close-Minded Medicaid Proposals Would Harm Patients, click here to read the blog.
3. Patient EngagementHIT: How Do Patient-Centered Medical Homes Support Patient Engagement? Click here to read the article.
4. Neurology Advisor: Language Used in Medical Record Can Affect Patient Care, click here to read the article.
5. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
6. Upcoming Events and Webinars, see details below.
7. Medical Journal Articles, see details below.
8. AHRQ Effective Program Updates, see details below.
1. At ISPOR’s 23rd Annual Meeting, PIPC Executive Director Sara van Geertruyden Discusses the Consequences of Flawed Value Assessments in Healthcare
PIPC Executive Director Sara van Geertruyden highlighted the consequences of using quality-adjusted life years for patients with disabilities or long-term health conditions at ISPOR's 23rd Annual International Meeting. “Sara Traigle van Geertruyden, JD, the executive director of the Partnership to Improve Patient Care (PIPC), highlighted 1 of the reasons why ICER assessments may not be cited as frequently as might be expected. According to van Geertruyden, assessments that rely on quality-adjusted life years (QALYs) have raised significant ethical questions because they can lead to discrimination against people who have disabilities or long-term health conditions. These patients, says van Geertruyden, will never achieve a state of ‘perfect’ health as assessed by a QALY.” Click here to read the article.
On the closing day of ISPOR’s meeting, van Geertruyden also discussed the role of value assessments in a healthcare landscape that is increasingly focused on the use of precision medicine in treating disease. “’What it boils down to is culture,’ said van Geertruyden. The current culture in the United States, she said, is structured upon a fail-first approach and on limiting access to new, expensive treatments. A cultural transition should focus on building evidence to know which treatments work for which patients, and when. Such an approach would help to save on costs by preventing adverse events or nonresponse to treatment. One key to achieving this new reality is to invest in real-world evidence earlier, so that payers have more information to work from.” Click here to read the article.
2. Epilepsy Foundation: Close-Minded Medicaid Proposals Would Harm Patients
Philip Gattone, President and CEO of the Epilepsy Foundation, penned a blog discussing the harms of cost effectiveness analyses to patients with epilepsy. “When it comes to epilepsy medications, individuals often react quite differently to available treatments. That’s why patients need meaningful access to the full range of treatments available — and the specialists who know how to prescribe them. This is quality physician-directed care that must be provided for patient-centered care. Recently published research shows that most cost effectiveness analyses do not account for these important differences among patients. Patients just want the treatment that works for them. Let’s call on states to demonstrate the impact of empowering patients and providers with information before we start taking away treatment options.” Click here to read the blog.
3. Patient EngagementHIT: Patients How Do Patient-Centered Medical Homes Support Patient Engagement?
Sara Heath outlines the benefits of the patient-centered medical home on overall patient engagement in an article for Patient EngagementHIT. “Additionally, the patient-centered medical home thrives off patient-centricity and a quality patient experience. Clinicians must build strong patient-provider relationships, focus on the whole person, and partner with patients and families to understand patient care needs and preferences. Additionally, the PCMH must create patient activation in care and empower patients in disease self-management. Care coordination, quality and safety, and accessible services during non-traditional office hours are also essential.” Click here to read the article.
4. Neurology Advisor: Language Used in Medical Record Can Affect Patient Care
Neurology Advisor reports on a new study by the Journal of General Internal Medicine that covers patient medical records. “Stigmatizing language used in medical records to describe patients can influence medical students and residents in terms of their attitudes towards the patient and their clinical decision-making, according to a study published in the May issue of the Journal of General Internal Medicine. Anna P. Goddu, from Johns Hopkins University in Baltimore, and colleagues surveyed 413 medical students and residents (54 percent response rate) using vignettes to assess whether stigmatizing language written in a patient medical record is associated with a subsequent physician-in-training's attitudes towards the patient and clinical decision-making.” Click here to read the article.
5. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register.
6. Upcoming Events and Webinars
PCORI's Achievements in Health Research and Future Outlook (AAMC Research on Care Community Webinar)
May 29, 2018
Click here for details
CQI Resource Center Demonstration and eCQM Annual Update for 2019 Reporting/Performance Overview Webinar
May 30, 2018
Click here for details
Advisory Panel on Rare Disease Spring 2018 Meeting
June 6, 2018
Click here for details
Risk-Adjustment in Quality Measurement: How and Why to Use It
June 6, 2018
Click here for details
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
7. Medical Journal Articles
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
8. AHRQ Effective Program Updates
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
PIPC Executive Director Sara van Geertruyden highlighted the consequences of using quality-adjusted life years for patients with disabilities or long-term health conditions at ISPOR's 23rd Annual International Meeting. “Sara Traigle van Geertruyden, JD, the executive director of the Partnership to Improve Patient Care (PIPC), highlighted 1 of the reasons why ICER assessments may not be cited as frequently as might be expected. According to van Geertruyden, assessments that rely on quality-adjusted life years (QALYs) have raised significant ethical questions because they can lead to discrimination against people who have disabilities or long-term health conditions. These patients, says van Geertruyden, will never achieve a state of ‘perfect’ health as assessed by a QALY.” Click here to read the article.
On the closing day of ISPOR’s meeting, van Geertruyden also discussed the role of value assessments in a healthcare landscape that is increasingly focused on the use of precision medicine in treating disease. “’What it boils down to is culture,’ said van Geertruyden. The current culture in the United States, she said, is structured upon a fail-first approach and on limiting access to new, expensive treatments. A cultural transition should focus on building evidence to know which treatments work for which patients, and when. Such an approach would help to save on costs by preventing adverse events or nonresponse to treatment. One key to achieving this new reality is to invest in real-world evidence earlier, so that payers have more information to work from.” Click here to read the article.
2. Epilepsy Foundation: Close-Minded Medicaid Proposals Would Harm Patients
Philip Gattone, President and CEO of the Epilepsy Foundation, penned a blog discussing the harms of cost effectiveness analyses to patients with epilepsy. “When it comes to epilepsy medications, individuals often react quite differently to available treatments. That’s why patients need meaningful access to the full range of treatments available — and the specialists who know how to prescribe them. This is quality physician-directed care that must be provided for patient-centered care. Recently published research shows that most cost effectiveness analyses do not account for these important differences among patients. Patients just want the treatment that works for them. Let’s call on states to demonstrate the impact of empowering patients and providers with information before we start taking away treatment options.” Click here to read the blog.
3. Patient EngagementHIT: Patients How Do Patient-Centered Medical Homes Support Patient Engagement?
Sara Heath outlines the benefits of the patient-centered medical home on overall patient engagement in an article for Patient EngagementHIT. “Additionally, the patient-centered medical home thrives off patient-centricity and a quality patient experience. Clinicians must build strong patient-provider relationships, focus on the whole person, and partner with patients and families to understand patient care needs and preferences. Additionally, the PCMH must create patient activation in care and empower patients in disease self-management. Care coordination, quality and safety, and accessible services during non-traditional office hours are also essential.” Click here to read the article.
4. Neurology Advisor: Language Used in Medical Record Can Affect Patient Care
Neurology Advisor reports on a new study by the Journal of General Internal Medicine that covers patient medical records. “Stigmatizing language used in medical records to describe patients can influence medical students and residents in terms of their attitudes towards the patient and their clinical decision-making, according to a study published in the May issue of the Journal of General Internal Medicine. Anna P. Goddu, from Johns Hopkins University in Baltimore, and colleagues surveyed 413 medical students and residents (54 percent response rate) using vignettes to assess whether stigmatizing language written in a patient medical record is associated with a subsequent physician-in-training's attitudes towards the patient and clinical decision-making.” Click here to read the article.
5. FDA Meeting for Patient-Focused Drug Development on Chronic Pain
The FDA is hosting a public meeting on Patient-Focused Drug Development for Chronic Pain on July 9. “FDA is interested in hearing patients’ perspectives on chronic pain, views on treatment approaches, and challenges or barriers to accessing treatments for chronic pain. FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressants; other medications; and non-pharmacologic interventions or therapies. The questions that will be asked of patients and patient representatives at the meeting are listed below, organized by topic. For each topic, a brief initial patient panel discussion will begin the dialogue. This will be followed by a facilitated discussion inviting comments from other patients and patient representatives in the audience. Webcast participants will also have an opportunity to provide input through webcast comments.” Click here to register.
6. Upcoming Events and Webinars
PCORI's Achievements in Health Research and Future Outlook (AAMC Research on Care Community Webinar)
May 29, 2018
Click here for details
CQI Resource Center Demonstration and eCQM Annual Update for 2019 Reporting/Performance Overview Webinar
May 30, 2018
Click here for details
Advisory Panel on Rare Disease Spring 2018 Meeting
June 6, 2018
Click here for details
Risk-Adjustment in Quality Measurement: How and Why to Use It
June 6, 2018
Click here for details
Medication-Assisted Treatment (MAT) Delivery for Pregnant Women with Substance Use Disorders Involving Prescription Opioids and/or Heroin (Cycle 2 2018) Applicant Town Hall
June 11, 2018
Click here for details
Improving Methods for Conducting Patient-Centered Outcomes Research (Cycle 2 2018) Applicant Town Hall
June 12, 2018
Click here for details
Psychosocial Interventions with Office-Based Opioid Treatment for Opioid Use Disorder PFA (Cycle 2 2018) Applicant Town Hall
June 13, 2018
Click here for details
Broad PFA Applicant Town Hall -- Cycle 2 2018
June 14, 2018
Click here for details
Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
7. Medical Journal Articles
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
8. AHRQ Effective Program Updates
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
Harms of First-Line Depression Treatment in Older Adults, click here to view.
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view.
