In This Week’s Issue:
1. The PCORI Blog: Connecting Patient and Family Groups with Health Researchers, click here to read the blog
2. Foundation Fighting Blindness and CheckedUp Partner to Educate Retinal-Disease Patients About Research, Resources, and Emerging Therapies During Doctor Visits, click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care, click here to RSVP.
4. Healthcare Dive — Fight for Mandated Nurse-to-Patient Ratios Heats Up, click here to read the article.
5. Clinical Leader: What's Next In Patient Engagement?, click here to read the article.
6. Patient EngagementHIT: FDA Recommits to Patient-Centered Care, Patient Access to Care, click here to read the article.
7. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources, click here for details.
8. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. The PCORI Blog: Connecting Patient and Family Groups with Health Researchers, click here to read the blog
2. Foundation Fighting Blindness and CheckedUp Partner to Educate Retinal-Disease Patients About Research, Resources, and Emerging Therapies During Doctor Visits, click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care, click here to RSVP.
4. Healthcare Dive — Fight for Mandated Nurse-to-Patient Ratios Heats Up, click here to read the article.
5. Clinical Leader: What's Next In Patient Engagement?, click here to read the article.
6. Patient EngagementHIT: FDA Recommits to Patient-Centered Care, Patient Access to Care, click here to read the article.
7. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources, click here for details.
8. FDA Meeting for Patient-Focused Drug Development on Chronic Pain, click here to register.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. The PCORI Blog: Connecting Patient and Family Groups with Health Researchers
In a post for The PCORI Blog, Lia Hotchkiss and Ivey Wohlfeld stress the importance of patient engagement in the research process. “At PCORI, we notice when organizations put patients and their caregivers front and center in health care. One such way organizations are doing this is by establishing patient and family advisory councils. But until now, only select councils have partnered with researchers on comparative clinical effectiveness research. PCORI-funded projects are enriching and broadening this important work to ensure that research aligns with what matters most to patients and families. We highlight one of these awards here in the lead-up to a conference this week for patient and family advisors.” Click here to read the blog.
2. Foundation Fighting Blindness and CheckedUp Partner to Educate Retinal-Disease Patients About Research, Resources, and Emerging Therapies During Doctor Visits
Foundation Fighting Blindness and CheckUp have partnered on a new multimedia system will provide targeted disease and research information to retinal-disease patients in waiting and exam rooms at 1,000 ophthalmology practices in US. “The Foundation Fighting Blindness (FFB) and CheckedUp have formed a collaborative partnership to deliver patient-friendly diagnostic and disease-management information to people with retinal diseases such as age-related macular degeneration, retinitis pigmentosa, and Stargardt disease during their visits to eye doctors. FFB, the world's largest private funder of research for inherited retinal diseases, will provide visual and audio content on retinal conditions, helpful resources, and emerging therapies for patients and caregivers through CheckedUp's innovative patient engagement technologies in waiting areas and exam rooms at doctors' offices.” Click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care
The Society for Women’s Health Research (SWHR) is holding a briefing on Capitol Hill on June 29 to discuss eliminating stigma and improving patient care for Endometriosis patients. “Join the Society for Women's Health Research (SWHR) for an expert panel discussion about the significant social and economic burden of endometriosis on women, families, and society. This chronic, painful disease affects 10% of reproductive-age women, but its cause remains unknown and there is no cure. This briefing will address the current state of endometriosis research, as well as policy considerations affecting a woman’s diagnosis, treatment, and access to care.” Click here to RSVP.
4. Healthcare Dive — Fight for Mandated Nurse-to-Patient Ratios Heats Up
In an article for Healthcare Dive, Toby Abraham writes about nurses' decades-long battle for better staffing ratios and why the healthcare industry has remained resistant. “Short-staffed and overworked nurses pose real risks to patient safety, health outcomes and workforce retention in hospitals. Kronos Incorporated polling shows 90% of nurses are considering leaving their hospital for another job, with burnout-related turnover rates among nurses already costing U.S. hospitals an estimated $9 billion per year. Recent research shows patient-heavy nurse staffing ratios are also costing patients their lives, especially in intensive care units. The hospital industry has pushed back, arguing that there simply isn't enough research to support a front-loaded investment in nursing staff. They also contend there are not enough nurses to hire in the first place and say staffing mandates would force facilities to close.” Click here to read the article.
5. Clinical Leader: What's Next In Patient Engagement?
Barbara Lopez Kunz discusses initatives that promote patient engagement in an article for Clinical Leader. “...Across the entire ecosystem, from industry and academia to regulators and health technology assessments, the goal to include patients is now on everyone's agenda. And patient partnerships have flourished as a direct result of the confidence and sense of autonomy patients have gained. Patients, who are experiencing the illness first-hand, have become an invaluable resource, capable of clarifying their priorities and needs long before we embark on discovery and R&D. But how can we derive the most value from this development?” Click here to read the article.
6. Patient EngagementHIT: FDA Recommits to Patient-Centered Care, Patient Access to Care
In an article for Patient EngagementHIT, Sara Health reports on to statements from FDA Commissioner Scott Gottlieb that reaffirmed the agency’s commitment to patient-centered care. “The FDA is continuing its efforts for patient-centered care, releasing two separate statements focused on incorporating patient voice into medical product development and improving patient access to affordable drugs. The first statement outlined FDA’s commitment to consulting patients about drug and medical device development. As much as FDA is able to learn about medical advances through scientific trials and experiments, it can glean equally valuable insights when communicating with patients about their needs and values. ‘Our work demands that we must continue to reflect on how we can make the science of drug development and review more modern and more patient-centered, so that approved products impact the metrics that real-world patients and families value most,’ FDA Commissioner Scott Gottlieb wrote in a statement.” Click here to read the article.
7. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources
AHRQ is seeking feedback from researchers, clinicians, policymakers, consumers, and others on its comprehensive Web-based Library of Patient-Centered Outcomes Research (PCOR) resources. “Feedback will be used to assess and potentially revise the layout, design, and content of the library of resources. The library, developed through investments by public, private, nonprofit, and academic organizations, includes PCOR findings and evidence-based tools that have appeared in the published literature, as well as studies and projects in progress. As outlined in a recent Federal Register notice, AHRQ seeks input on how well the library of PCOR resources and its materials meet the needs of users.” Click here for details. Deadline: June 29, 2018.
8. 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.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
NPC @ AcademyHealth 2018 Annual Research Meeting
June 24-26, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
Webinar: Barriers to Paying for Value
June 26, 2018
Click here for details
Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight
June 29, 2018
Click here for details
NPC @ MedCity CONVERGE
July 11-12, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
10. Medical Journal Articles
Patient Similarity for Precision Medicine: A Systematic Review, click here to view.
Multi-Stakeholder Engagement in Health Services Research, click here to view.
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
11. AHRQ Effective Program Updates
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
In a post for The PCORI Blog, Lia Hotchkiss and Ivey Wohlfeld stress the importance of patient engagement in the research process. “At PCORI, we notice when organizations put patients and their caregivers front and center in health care. One such way organizations are doing this is by establishing patient and family advisory councils. But until now, only select councils have partnered with researchers on comparative clinical effectiveness research. PCORI-funded projects are enriching and broadening this important work to ensure that research aligns with what matters most to patients and families. We highlight one of these awards here in the lead-up to a conference this week for patient and family advisors.” Click here to read the blog.
2. Foundation Fighting Blindness and CheckedUp Partner to Educate Retinal-Disease Patients About Research, Resources, and Emerging Therapies During Doctor Visits
Foundation Fighting Blindness and CheckUp have partnered on a new multimedia system will provide targeted disease and research information to retinal-disease patients in waiting and exam rooms at 1,000 ophthalmology practices in US. “The Foundation Fighting Blindness (FFB) and CheckedUp have formed a collaborative partnership to deliver patient-friendly diagnostic and disease-management information to people with retinal diseases such as age-related macular degeneration, retinitis pigmentosa, and Stargardt disease during their visits to eye doctors. FFB, the world's largest private funder of research for inherited retinal diseases, will provide visual and audio content on retinal conditions, helpful resources, and emerging therapies for patients and caregivers through CheckedUp's innovative patient engagement technologies in waiting areas and exam rooms at doctors' offices.” Click here to read the press release.
3. Briefing — Endometriosis: Erasing Stigma, Improving Patient Care
The Society for Women’s Health Research (SWHR) is holding a briefing on Capitol Hill on June 29 to discuss eliminating stigma and improving patient care for Endometriosis patients. “Join the Society for Women's Health Research (SWHR) for an expert panel discussion about the significant social and economic burden of endometriosis on women, families, and society. This chronic, painful disease affects 10% of reproductive-age women, but its cause remains unknown and there is no cure. This briefing will address the current state of endometriosis research, as well as policy considerations affecting a woman’s diagnosis, treatment, and access to care.” Click here to RSVP.
4. Healthcare Dive — Fight for Mandated Nurse-to-Patient Ratios Heats Up
In an article for Healthcare Dive, Toby Abraham writes about nurses' decades-long battle for better staffing ratios and why the healthcare industry has remained resistant. “Short-staffed and overworked nurses pose real risks to patient safety, health outcomes and workforce retention in hospitals. Kronos Incorporated polling shows 90% of nurses are considering leaving their hospital for another job, with burnout-related turnover rates among nurses already costing U.S. hospitals an estimated $9 billion per year. Recent research shows patient-heavy nurse staffing ratios are also costing patients their lives, especially in intensive care units. The hospital industry has pushed back, arguing that there simply isn't enough research to support a front-loaded investment in nursing staff. They also contend there are not enough nurses to hire in the first place and say staffing mandates would force facilities to close.” Click here to read the article.
5. Clinical Leader: What's Next In Patient Engagement?
Barbara Lopez Kunz discusses initatives that promote patient engagement in an article for Clinical Leader. “...Across the entire ecosystem, from industry and academia to regulators and health technology assessments, the goal to include patients is now on everyone's agenda. And patient partnerships have flourished as a direct result of the confidence and sense of autonomy patients have gained. Patients, who are experiencing the illness first-hand, have become an invaluable resource, capable of clarifying their priorities and needs long before we embark on discovery and R&D. But how can we derive the most value from this development?” Click here to read the article.
6. Patient EngagementHIT: FDA Recommits to Patient-Centered Care, Patient Access to Care
In an article for Patient EngagementHIT, Sara Health reports on to statements from FDA Commissioner Scott Gottlieb that reaffirmed the agency’s commitment to patient-centered care. “The FDA is continuing its efforts for patient-centered care, releasing two separate statements focused on incorporating patient voice into medical product development and improving patient access to affordable drugs. The first statement outlined FDA’s commitment to consulting patients about drug and medical device development. As much as FDA is able to learn about medical advances through scientific trials and experiments, it can glean equally valuable insights when communicating with patients about their needs and values. ‘Our work demands that we must continue to reflect on how we can make the science of drug development and review more modern and more patient-centered, so that approved products impact the metrics that real-world patients and families value most,’ FDA Commissioner Scott Gottlieb wrote in a statement.” Click here to read the article.
7. Request for Comment: AHRQ Library of Patient-Centered Outcomes Research Resources
AHRQ is seeking feedback from researchers, clinicians, policymakers, consumers, and others on its comprehensive Web-based Library of Patient-Centered Outcomes Research (PCOR) resources. “Feedback will be used to assess and potentially revise the layout, design, and content of the library of resources. The library, developed through investments by public, private, nonprofit, and academic organizations, includes PCOR findings and evidence-based tools that have appeared in the published literature, as well as studies and projects in progress. As outlined in a recent Federal Register notice, AHRQ seeks input on how well the library of PCOR resources and its materials meet the needs of users.” Click here for details. Deadline: June 29, 2018.
8. 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.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting: June 19, 2018
June 19, 2018
Click here for details
NPC @ AcademyHealth 2018 Annual Research Meeting
June 24-26, 2018
Click here for details.
DIA 2018 Global Annual Meeting
June 24-28, 2018
Click here for details.
Webinar: Barriers to Paying for Value
June 26, 2018
Click here for details
Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight
June 29, 2018
Click here for details
NPC @ MedCity CONVERGE
July 11-12, 2018
Click here for details.
Examining the Impact of Real-World Evidence on Medical Development: Application
July 17, 2018
Click here for details.
10. Medical Journal Articles
Patient Similarity for Precision Medicine: A Systematic Review, click here to view.
Multi-Stakeholder Engagement in Health Services Research, click here to view.
Care Transitions From Patient and Caregiver Perspectives, click here to view.
Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind? Click here to view.
A Framework for Identifying Treatment-Covariate Interactions in Individual Participant Data Network Meta-Analysis, click here to view.
Nursing Research, CER, PICO and PCORI, click here to view.
Comment & Response: Measures of the Burden of Medical Expenses, click here to view.
A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies, click here to view.
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research, click here to view.
Missing Data in Trial-Based Cost-Effectiveness Analysis: An Incomplete Journey, click here to view.
Effectiveness and Safety of Direct Oral Anticoagulants and Warfarin, Stratified by Stroke Risk in Patients with Atrial Fibrillation, click here to view.
Patient-Centered Recruitment and Retention for a Randomized Controlled Study, click here to view.
Pharmaceutical Benefit Managers, Brand-Name Drug Prices, and Patient Cost Sharing, click here to view.
Frequency and Magnitude of Co-Payments Exceeding Prescription Drug Costs, click here to view.
Factors Contributing to Higher Health Care Spending in the United States Compared With Other High-Income Countries, click here to view.
PCORnet's Collaborative Research Groups, click here to view.
Increasing Uptake of Comparative Effectiveness and Patient-Centered Outcomes Research Among Stakeholders: Insights from Conference Discussion, click here to view.
11. AHRQ Effective Program Updates
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Registries for Evaluating Patient Outcomes: A User’s Guide Call for Case Examples, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.
Mobile Health Applications for Self-Management of Diabetes, click here to view.
Role of Immunotherapy in the Treatment of Asthma, click here to view.
Library of Common Data Definitions: Atrial Fibrillation, click here to view.
Library of Common Data Definitions: Asthma, click here to view.
Patient or Participant Generated Registries, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Prioritization and Selection of Harms for Inclusion in Systematic Reviews, click here to view.
Attention Deficit Hyperactivity Disorder: Diagnosis and Treatment in Children and Adolescents, click here to view.
A Framework for Conceptualizing Evidence Needs of Health Systems, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
